#816 (Not So) Blue Christmas
Scott Benner
Blue has type 1 diabetes and a lifetime of stories.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 806 of the Juicebox Podcast.
Today, I'll be speaking with blue, and she has had type one diabetes for a very long time. Despite the title of this episode, there's nothing sad about it. I just couldn't resist using Blue's name along with Christmas this close to Christmas. Today we'll hear blue story talk about how her life with diabetes is going now. And we'll get into a few things from a number of years ago. Just the first couple of minutes the audio is wonky, but I left it in because it it anyway, we get it fixed and I wanted you to have context for what gets said afterwards. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. Or becoming bold with insulin. If you are feeling festive and charitable. Take out that feeling AT T one D exchange.org. Forward slash juicebox. By joining the registry and filling out the survey you need to be a type one who has I'm sorry, you need to be a US resident who has type one or is the caregiver of type one. Boy, I'm a hot mess here. Listen, just go take the frequent survey T one D exchange.org. Forward slash juicebox there's plenty of good reasons why you shouldn't apparently I can't say any of them right now. This episode of The Juicebox Podcast is sponsored by Dexcom and Dexcom makes the Dexcom G six and Dexcom G seven. You want to go learn more about it. You certainly can and you can do that@dexcom.com forward slash juice box a G six is available everywhere. G seven was just a couple of weeks ago okie dokie by the FDA in the United States, but you can already get it Europe anyway use my link to find out about it. The podcast is also sponsored today by the insulin pump that my daughter has been wearing since she was four years old the Omni pod head to Omni pod.com forward slash juice box to learn more about the Omni pod five, the Omni pod dash or, or the possibility of getting yourself a free 30 day trial of the Omni pod dash all that can be learned about at my lake Omni pod.com forward slash juice box on last one. US med that's where Arden gets her diabetes supplies from and you can as well you can get on the pod five Dexcom libre three all kinds of stuff. They are even starting to carry some insolence. So check them out us med.com forward slash juice box or call 888-721-1514 To get your free benefits check.
Blue 3:04
Okay, hi, my name is blue. I am 56 years old, and I've had played one for 40 years.
Scott Benner 3:14
40 years 56 years old. My goodness. That's a heck of a long time. 40 years 1982 Yep. Okay. I had I might have been in middle school, then blue, what's going on?
Blue 3:33
I don't know what you're not that much younger than I am
Scott Benner 3:35
not. But I'm trying to do the math. I mean, well, you
Blue 3:39
know, I'm okay. I was only in 10th grade. So I'll give you that.
Scott Benner 3:44
10th grade and the ad is getting diabetes, huh? Yeah. How did that go? Exactly?
Blue 3:50
It was well, I was actually while I was symptomatic for months, like before Christmas, I was diagnosed more 16. So I would say I remember we went Christmas shopping for like jeans and stuff. Probably August, September. And by Christmas, they didn't fit. So then my birthday is March 14, which is when I got pregnant, but didn't know. And then two days later was diagnosed with type one. So funny stuff.
Scott Benner 4:30
Alright, so hold on a second. So you're saying that in the 10th grade, you found out that you had diabetes and found out how reproduction work?
Blue 4:43
I probably knew before that before.
Scott Benner 4:48
Oh my gosh. So how old is your daughter? Your daughter right?
Blue 4:52
Yes, I have two girls.
Scott Benner 4:53
Okay. How old is the oldest?
Blue 4:56
You tell me? Well, no, no,
Scott Benner 4:58
I think two Let me get. So she was you were 16 I
Blue 5:03
was still pregnant at the time. So I don't know. But tell me how old are you? 39
Scott Benner 5:08
Okay, cool. 39 And how's the youngest? 17? Okay. You just trying to hit all the decades with a baby if you can.
Blue 5:19
Yeah. And the second one was plan. The first one wasn't? Yeah. Do
Scott Benner 5:27
do any. Do either of your kids have autoimmune stuff?
Blue 5:31
No, no. They are very healthy.
Scott Benner 5:35
Oh, that's so cool. How about in your extended family like your mom, your dad, uncles and aunts.
Blue 5:42
My mother was a type two. She I don't know what else she had. My family is very small. But I you know, because we have like, family that we don't talk to anymore. But my aunt, I named my aunt and her daughter. So my husband, they have thyroid issues. And I just found out my oldest, my oldest sister who I haven't spoken to him, like 37 years. She has MS and some kind of blood cancer. I can't really get I mean, I wanted that inflammation for, you know, health purposes.
Scott Benner 6:26
Well, I have to tell you, before we continue, I'm very worried that the way your voice is recording, people aren't gonna be able to hear you. Right. Okay, so let's try taking those headphones out and putting them into the case so they don't connect to your computer to do with the microphone on the computer. I think if you're okay with this, I think this is how we should do it. That's fine. All right. So I'm gonna recap very quickly. 10th grade diagnosed with type one, pregnant the same year 1982 You are 56 Now you had diabetes for 40 years. You have two girls 39 and 17. Neither of them have autoimmune stuff. And we were just talking about your mom has type two. You have a pretty small family that you haven't been that connected to. You've reconnected a little bit with a sister who's 37 You learned that she had go
Unknown Speaker 7:22
now my sisters are older. My sister I haven't spoken to her in 37 years. But um, I got this information from a cousin who speaks with her. So yeah, she has MS and a some kind of blood cancer but I I can't find out what kind.
Scott Benner 7:41
This is a sister, like from your parents like not a half sister or step sisters.
Unknown Speaker 7:46
She's a half sister. We have the same mom. Yeah. Okay. Um,
Scott Benner 7:52
I wonder if Ms is autoimmune. It's gotta be something with is multiple sclerosis and autoimmune disease. Let's see what the is commonly held view that multiple sclerosis may be an autoimmune disease. Most neurologic neurologically MS is an autoimmune disease and most texts on autoimmunity point to ms as a prime example of an autoimmune disease. This view has influenced research into the pathogens of Ms. Okay, so I don't think they're ready to say for sure, but it seems like they're pretty, pretty comfortable saying it might be. Okay. Alright, so there's that.
Unknown Speaker 8:37
You your mom, my dad, my dad has one half sister. And she has tight to now.
Scott Benner 8:44
Okay, but no, like celiac? Thyroid.
Unknown Speaker 8:47
My sister has, I think Crohn's. They don't make this stuff noon. i It's weird.
Scott Benner 8:54
How everybody stays quiet. I understand. It's only it's only type one to talk about their stuff to be honest. I mean, Crohn's is autoimmune, right. It's an autoimmune disorder. Yeah, Crohn's is autoimmune. Okay. Okay. See, now we're, we're, we're picking through like, 23andme for your family. We don't even need them here. Yeah. Alright, so going back to being diagnosed in high school. I do want to hear a little bit about that. So you have diabetes for how long before you know you're pregnant?
Unknown Speaker 9:30
Um, a few months. And then my mother actually asked me in the summer went well, actually. So I was diagnosed March 16. We didn't know I was pregnant yet. And that whole thing. I didn't really go to school. Again, excuse me like after that. So in the summer after a few months, I knew but I was scared to death to tell my mom. Okay, so when I was like five months, she sat me down and asked me if I was pregnant. And I said, I don't know. And she said, What do you mean? You know, now, when's the last time you had your period? And I said, five months ago. And she's like, you haven't had your period and five months, and you don't know if you're pregnant. So you should
Scott Benner 10:27
have said no way you did a poor job of explaining to me how all this work.
Unknown Speaker 10:31
Which is crazy. I'm one out of four girls, even I don't have contact with any of them. And my mom was always like, about the birth control because she was very young. You know, she was back in the day where you didn't talk about it. Right. So she was strapped with three kids by the time she was 19. Wow, really? Yeah. It's sad.
Scott Benner 10:51
No kidding. That's really something three kids by when she was 19. How old was her oldest?
Blue 10:58
Um, three. Wow.
Unknown Speaker 11:01
I think she was 14 or 15. When she had the first one. Yeah,
Scott Benner 11:06
but you didn't miss by much either. Right? Were you like 16? I was 1616. Okay. Are you by any any chance with that man? No, no. You left your voice you're like, that didn't work out.
Unknown Speaker 11:20
I will chuckle out loud. Yes. Actually, he was 22 when she was born. And he denied her. So that was fun.
Scott Benner 11:30
So he's in prison here saying?
Unknown Speaker 11:33
Actually, she after all these years, she has a great relationship with him. And I'm very, I'm glad because our family is so small. Yeah. And yeah.
Scott Benner 11:47
That's really something what was management? Like an 82? I mean, did you have a regular an MPH or not even?
Unknown Speaker 11:54
Yes. Well, this is the thing, like I hear people, I'm not going to touch anything. You're going to touch things, right? So I, I hear people say, Oh, I was misdiagnosed and everything. And I'm gonna go yeah, whatever. Um, but thinking about it now. My I was diagnosed by my physician, my family physician who actually delivered me. So he knew me, you know, my whole life. And I think he was kind of in denial. So my mom's like, you're losing a lot of weight. I was down to like losing a pound a day towards the end. And my mom's like, what are you doing diet pills? What's going on? And I said, No. And she said, You have to go to the doctor. I mean, you know what it
Scott Benner 12:50
is? I say, all the time. If if people's diabetes devices can make noise on this podcast, I don't know where they can make. That's fine.
Unknown Speaker 12:57
I had a horrible night. But anyway. So first, he, Okay, it's time to go low, which was something I want to ask you about, but I'll get back to that. So, at first he said, my mom thought, Oh, it must be diabetes or cancer. So of course, she's glad it's diabetes. And they just took like a urine test. And my sugar was in the six hundreds. And he said, Try diet and exercise. Excuse me. So I did that for a few weeks at 600. And that didn't work. So then he said, Oh, no, you must be a type two, because you're 16. And that's a weird age to be diagnosed that you know, in those dates. So you put me on diabetes, which I think was like the only diabetic pill. My grandmother took it. And that I say my grandmother was tied to said your mom was my mom. Yeah, I don't think that my grandmother was also but yeah, that was, she's been dead forever. So
Scott Benner 14:12
that made me laugh for some reason.
Unknown Speaker 14:14
Sorry. No, I wasn't close to my grandma. Just
Scott Benner 14:18
dead forever. For some reason. I was like, I don't know. It just made me chuckle I it's inappropriate.
Unknown Speaker 14:24
That's okay. You know, some people can't say things like that. But so yeah, so I was on that and that wasn't working. And then so I never had the whole go in the hospital, get this training, go home and all this pamphlets. I never had any of that.
Scott Benner 14:43
Because they thought you had type two if you don't exercise. Right. Did you think exercise is that what happened there where you're like,
Unknown Speaker 14:50
oh yeah. So then finally when he said type one, and he sent me home, you know, with the MP Ah, and the regular and said, and the syringes and you know, we practice on the oranges. And that's what we did. And that's it. So that was that was by May. So I was diagnosed in March. And I started insulin in May, March.
Scott Benner 15:16
That's a long time. It's a couple of months. And so you were just doing like a shot in the morning and a shot at dinner.
Unknown Speaker 15:23
I can't remember what I remember the MPH was like, two units, something ridiculous. Um, and then
Scott Benner 15:36
how did you measure success? Was Was their meter you just did the thing they told you to do. And that was that.
Unknown Speaker 15:43
I didn't have a meter at first. Yeah, I didn't have a meter for a while. So what what we did was we went to his office and got blood drawn every four months. And he made adjustments according to that blood test. Okay, because I don't even think they had the a one CS back then. Or they weren't talked about because I remember when they talked about them. They were like, Oh, they're going to be able to tell and I was like, oh, no, I'm not going to be able to, like, be good before that blood test. So it looks like I'm doing well.
Scott Benner 16:14
Is that how it felt? Like, I'll I'll eat like a bird for a couple of weeks before my blood test. Yeah.
Unknown Speaker 16:19
Yeah, that's what we did. That's how judged
Scott Benner 16:22
Yeah, and then. So how did your pregnancy go? With I mean, newly diagnosed diabetes and 82.
Unknown Speaker 16:30
Um, I have preeclampsia. I don't know if that's do. I mean, that if diabetes contributes that too, because I know, people have it that aren't diabetics. But, um, because of her size from my diabetes. She had to be induced three weeks early. And she's still weighed 911. Wow, three weeks early. Yeah. natural births. So coming out, She almost killed me. I guess both of us.
Scott Benner 16:59
I bet you three more weeks, she might have been 10 pounds or 12 to 15. And they were saying My goodness. That's
Unknown Speaker 17:07
crazy. Yeah, they're like, We got to get this baby out. Wow. Okay.
Scott Benner 17:11
And did she have any issues coming out? Or was she okay?
Unknown Speaker 17:14
Because of being huge, which this makes me angry. She has, she got a pinched nerve. It is called. I have that brain fog all the time. I don't know if it's age, or what it is. Let me turn this phone off. Because that's why I didn't get your text earlier because I hadn't silenced. She has a name. The layman's term is Erbs Palsy.
Scott Benner 17:46
Okay. And that was from from birth. She's had it.
Unknown Speaker 17:49
Yeah, she had she got she was too big coming out. So she got stuck. So I had a nurse on either side of me, like with their fist pushing her out of me, my gosh. And she has a pinched nerve on her. I believe her l five.
Scott Benner 18:07
The bronchial Plexus stem from the word she has Plexus. Yes. brachial plexus that so she has that from the birth because she was too big to come out. Yes,
Unknown Speaker 18:18
they should have done a C section. And they didn't. Yeah. Interesting. makes me angry. So I tried to you know, anybody I find out any of my type one friends, I find out they're pregnant. I'm like, Oh my God, you need to talk to your doctor. And they're always like, brushing me off. And I'm like, You're crazy, because my daughter is 39. And he still suffers.
Scott Benner 18:39
Yeah. You have an interesting path through diabetes. Really? I'm going to fast forward a little bit. So you and I probably meet just quickly, I would imagine in that church, is that right?
Unknown Speaker 18:56
That's when we met right? Carson? Yes. But
Scott Benner 19:00
online before that. Yes. Yeah. So you've been listening to this podcast for a long time, haven't you?
Unknown Speaker 19:06
A long time. episodes in the hundreds? Well, you remember Amy?
Scott Benner 19:14
Your friend? Amy? Yes.
Unknown Speaker 19:16
We met in the diner, the blonde from the diner, right? Yeah. And she was so excited. She was saying, oh my god, do you listen to the podcast? And it's helped me so much about you know, she was going on and I'm like, I don't know what you're talking about. But I'll listen to it. And I went home and listen to it. And we're good friends. That was four years ago. Yeah. So that's how long it's been a long time. Yeah, it was four years ago.
Scott Benner 19:43
How? How do you find so you seem to meet a lot of people with type one in your personal life. Is that fair to say?
Unknown Speaker 19:53
Um, I did it through camp because I met Amy. I went to diabetes adult weekend. And I can't Magetta and we met 70 type ones. And we were very fortunate that a lot live in our area.
Scott Benner 20:12
So you made friends? Yes. Yeah.
Unknown Speaker 20:15
So that's how we have like, we made a personal Meetup group for people in the Philadelphia area. And oh, yeah, I have, I have two friends that live once a mile away once two miles away, okay.
Scott Benner 20:28
I, most of the most of the messages I get from you are about you meet people with diabetes, and you want to help them, and they're resistant to it. And it makes it seems to hit you on a personal level. Like, I wonder if you could tell me, I've always wanted to hear you talk about this more long, like long form. So how does that make you feel when you meet them, and you're trying to impart something on them, you know, would be valuable to them, and they don't want to hear it.
Unknown Speaker 21:00
It's, it's very frustrating. And it's sad, because I know, I know, the complications they're going to have in the long run. And I mean, when you see your friends, and they go up to 400, and then they go to 40. And then they go to, you know, up, down, up down constantly. And I'm like, it doesn't have to be that way. And people are always like, I don't listen to podcasts. I never listened to a podcast before. Before juicebox. I never listened. But she told me to listen. I'm like, hey, this sounds like it can help me. So I'm gonna listen. And
Scott Benner 21:36
well, what what was going on in your life that you were like, Okay, I'll just do a podcast. Like, I'll give it a try. Like, where was your? Where was your diabetes at at that point?
Unknown Speaker 21:45
Um, I, it was, it was, I was doing the best I could not I was doing everything I'm supposed to do and counting my carbs and everything. And so I would say my A onesies, although I don't put a lot of weight into those because I've seen graphs. And I've seen my friends say with their 81. CSR, and I'm like, oh, that's scary. Especially when others when they post it online, and then others say, Oh, my God, what are you doing? You're a one sees great. And I'm like, Ooh, yeah, I see that I see what's going on in the background. So I don't put a lot of weight into the a one C's. But um, it's definitely helped me that, like, when I first got Medtronic years ago, the trainer, and this makes you angry. She's like, Oh, this thing has a lot of bells and whistles. It has things you don't need to know about.
Scott Benner 22:52
This. What? Like, extended boluses the life? Yeah,
Unknown Speaker 22:56
exactly. So I wasn't even taught about it. Right? That makes me mad.
Scott Benner 23:00
No, I understand. You mentioned brain fog a minute ago. You think that's from diabetes?
Unknown Speaker 23:05
I have no idea.
Scott Benner 23:08
How does it strike? You just are you in a loss for words? Or
Unknown Speaker 23:12
I cannot remember the words of things. Okay. Like, I'll, I'll just describe it. And my husband and my daughter, like, um, like, you know, like that green thing. And it's shaped like this. And they're like, and they'll name it. And I'm like, I'm sorry. I'm just at a loss. Yeah.
Scott Benner 23:34
You mean the mixer? Mom? Like, like that kind of a thing? Like almost a simple word.
Unknown Speaker 23:38
Or? Yeah, yeah, absolutely. Absolutely.
Scott Benner 23:42
That's something how long has that been going on?
Unknown Speaker 23:45
Oh, I would say at least the last couple of years. Okay.
Scott Benner 23:48
So we knew we've had diabetes a very long time. Obviously, you've been through a number of different iterations of how people have told you to manage I imagine you move to you know what they call fast acting insulin back then and basil they probably put you on what human Lantis and Yes, right. And then you probably did that for a very long time. When's the first time you to CGM? Oh,
Unknown Speaker 24:13
it was the ducks calm.
Scott Benner 24:21
Let me give this to you. Quick and sweet. Usually short and sweet as the saying, but I wanted to say quick and Squeak, quick and Squeak, quick and sweet. Now of course, none of this is it's not sweet or it's quick, nor quick right now it's late at night. dexcom.com forward slash juice box. Make knowledge your superpower with the Dexcom CGM system, zero finger sticks, glucose readings right on your smart device. And customizable alerts and alarms are but some of the reasons why you should get started with the Dexcom Here's some of the other reasons how about you can see blood sugars in real time on your Dexcom receiver or on your smartphone. And not just you the person with diabetes or the child with diabetes. But if you prefer, people can follow you. For instance, I'm following my daughter right now, she had some french fries with dinner tonight, had a high blood sugar got a little stuck, she's been making some nice Bolus is to get it down, using her Dexcom to see where she's been all night. And I'm seeing a nice decline, she's starting to drift down. And not just the drift. It's a purposeful move that we made. Actually, I don't what am I saying I haven't helped her with it at all. Tonight, she made she's looking at her Dexcom graph, thinking about what she ate, seeing what's happening, which is probably a fat and protein rise from the French fries. And she's bolusing to make meaningful change to her blood sugar. I'm looking at it right now, I'm actually it's gonna change while we're here, she's 188 Diagonal down, which means she's falling between like, you know, one in three points per minute, maybe. Anyway, that's what you get from the arrows speed and direction and the number all with your Dexcom dexcom.com forward slash juice box get started right now. It's, it's the device to have if you're using insulin. Another great device to have if you're using insulin is the Omni pod. Now that's going to be on the pod.com forward slash juice box as well. When you go there, I'm sorry to tell you there'll be a photo of me try just what I do when it comes up as I hold my hand up, just out in front of me so I can't say and then you just scroll past the photo. And it starts talking to you about a lot of different things. One of them is if you'd like to take the Omni pod dash out for a test drive, you may be eligible for a free 30 day trial. Where are you going to learn about that omnipod.com forward slash juice box. At that same link. You can also talk to a specialist read about the Omni pod five, fill in some information to get the whole thing going. It's a one stop shop for your Omni pod needs. Now, do you want an omni pod five? Do you want an algorithm based pump? I think you should think about it. It's a viable option. And it's unlike anything else you're gonna find. Omni pod five is the first tubeless automated insulin delivery system. It's not bad. It's making adjustments to your insulin. Automatically. I thought I thought you got that by the name but it's amazing. And it might just be for you. And if it's not, if you don't want automation, I get that you can still get the Omnipod dash wonderful, wonderful device tubeless insulin pumps, both of them Omni pod five Omni pod dash Omni pod.com forward slash juicebox head over right now and take a look. Now, you want that on the pod and that Dexcom you can get them the way you're getting them right now. No harm no foul like that. Or you could get them the way my daughter does. From us med That's us med.com forward slash juicebox you go there and get yourself a free benefits check. Don't like the internet, call the phone number 888721151 for us med carries everything. Everything from insulin pumps to diabetes testing supplies, the latest CGM Dexcom G six libre three I'm hearing whispers Dexcom G seven producing. And I mean goodness take Medicare nationwide. Over 800 private and end over 800 private insurers. They offer you better service and better care at US Med and they always provide 90 days worth of supplies and fast and free shipping. US med has served over 1 million diabetes customers since 1996. My daughter is one of them. You could be to get white glove treatment at US med us med.com Ford slash juice box or call 887211514 please use my links because when you do Dexcom on the pod us Matt and all the rest know you're coming through the podcast. And that really does help the show. If you can't remember these links, they're in the podcast player you're listening in now in the shownotes or you can find them at juicebox podcast.com. For a free for full safety risk information and free trial Terms and Conditions about the Omni pod. Go to omnipod.com forward slash juice box. I'm sorry I was supposed to say that a minute ago but I didn't so say it now back to blue. When's the first time you the CGM
Unknown Speaker 29:54
Oh, it was the dex calm I,
Scott Benner 30:01
Okay, couple generations ago,
Unknown Speaker 30:03
that was the five. Yeah. So that was about why I've been listening to you while I've been listening to you for, I guess it was before I was listening to you was shortly, like, maybe five, five years. Because I had Medtronic first. And I had even before the InLight came out that other CGM that they had. It was horrible. The numbers were horrible, so I didn't even bother wearing it. Yeah. I'm like, This is not good information.
Scott Benner 30:36
Right? When? So when you start listening to the show, like maybe about four years ago, did it? Where did the value come from? First for you? Was it hearing people's stories? Or was it hearing about, like management ideas? Or what did you care about at that point?
Unknown Speaker 30:53
Um, management ideas? Were very helpful. Okay. Yeah, like, um, because I told you before, but I have guests or creases, I was diagnosed about five years ago. Now, it's not bad to where I throw up like, people. I've heard stories people get really bad, right? I actually have a friend who has a pacemaker in her stomach. For her GP. Really? Yes.
Scott Benner 31:19
What does that do?
Unknown Speaker 31:22
It makes her stomach move.
Scott Benner 31:26
It stimulates her stomach. Yes. Oh, I say
Unknown Speaker 31:29
he loves it. She's like, it's the best thing she ever did.
Scott Benner 31:33
Okay, that's very cool. Yeah, it's amazing. So with my
Unknown Speaker 31:37
GP, that makes it more difficult. So when I found out about like, the basil lowering or hiring the Basal, like, that's very helpful.
Scott Benner 31:53
So just little stuff about manipulating the insulin has been helpful for you. Yeah. So. So let's go through it for a second. So you have brain fog. You're not sure what it's from gastroparesis. I mean, that's, that's the neuropathy, right? So do you have and you have trigger finger, right. Did you just get surgery?
Unknown Speaker 32:11
I did. Yeah.
Scott Benner 32:12
How's that go?
Unknown Speaker 32:14
Wonderful. It looks great. You can see it, but yeah. Well, um, I've been seeing that surgeon for 17 years. Yeah. So I've had five trigger finger surgeries. Both these ones, carpal tunnel, carpal tunnels, right. I had I had frozen shoulder very bad. It was frozen, to where I could barely move it for five years. Before I got the surgery. And that was nine years ago. Surgery helped. It did help. I'm still in pain. I still have to stretch a lot. I don't have full range of motion. I have maybe 70 80% range. Yeah, so that's like an ongoing thing.
Scott Benner 32:59
Battle, right. Anything else?
Unknown Speaker 33:03
Um, and I had my old honor. So I'm not sure if that's related to diabetes where it gets numb. It goes down these two fingers. Baby fingers. Just goes all the way down from your
Scott Benner 33:16
elbow all the way into your finger. Yes. Surgery is there. Yeah. How often does that happen? What do you mean?
Sorry. That should not that should not the only nerve is that pain constant or does it come and go?
Unknown Speaker 33:39
It's not a pain. It's a numbness, numbness. And it is. Now it doesn't bother me too much. But I can't lean on my elbow. Like if I'm driving. I can't have it on the headrest. I have to have it back.
Scott Benner 33:54
Interesting. Okay, but you're not sure if that's diabetes or not?
Unknown Speaker 33:57
No, but I have another diabetic friend who had the same surgery.
Scott Benner 34:01
Oh, no kidding. Okay. Oh, my goodness. Okay. So at this point, now, we started to talk about and you kind of stopped? What, what's your control? Like, at this point? Are you? You know, is it way better than it was a year ago than five years ago, then? I mean, are you happy with it? Are there days you think I wish I could do something different here? Or like I guess I'm asking you if you're still sort of like if you feel like you're battling with diabetes, or if you have some sort of a stability for yourself
Unknown Speaker 34:34
lately. The stability is better. Lately, I've been finding at night, I'll run high. And then I can take insulin. Like five times like it'll wake me up and I'll take insulin to bring it down and it doesn't do anything. Until I start. I just want to turn my and so on
Unknown Speaker 35:08
so I just saw my endo last week. And she's a wonderful woman. Oh my goodness, I've had diabetes longer than she's been alive. But um, and I said, Listen, you can see it's high. And as soon as I wake up, it's like, the insulin starts working. So I don't know if that's, um hydration problem do you think
Scott Benner 35:31
over so overnight, your blood sugar's going up? When does it start going up?
Unknown Speaker 35:36
Um, sometimes it's not all the time. But if it does it I can't get it down. It will not get down until I get up and move around.
Unknown Speaker 35:48
How high does it go up?
Unknown Speaker 35:51
It can go to 50.
Scott Benner 35:55
So randomly, not always, not always the same time even. You can jump up overnight to 250. And until you wake up and move around, you're having trouble moving it with insulin, there's no amount of insulin little break it like having been used. So you've made like big hard swings at it and try to move it.
Unknown Speaker 36:14
Yes, I'll take like up to 10 units. Okay, like not at one time, I'll get like, it'll wake me up. And I'll take like, two, three units. And then it'll wake me up again. And I'll look like if it's been an hour or whatever, then I'll take two more. I'll take two more, and it won't come down. And the minute I get up and start moving around. I have a slight down arrow, and it finally starts going down. Have you and he she said to me? We'll get up and move in the middle of the night.
Scott Benner 36:46
I said why sleeping?
Unknown Speaker 36:49
I'm supposed to. It's bad enough. I don't get sleep, you know, because I'm up peeing all night. I'm like, I'm supposed to get up and walk around at night. But she kind of chuckled and said yes.
Scott Benner 36:58
Well, I have. So my question. First is how much insulin would move you from 250 to 100 during the day normally? Um 233 minutes. Okay. Yeah, you're doing too. And that's not touching it. So something's driving your blood sugar up. And it's not I mean, at that late at night, it's unlikely to be food. Like you're not eating a cheeseburger and fries before you go to bed. Right? Yeah, I'm a night person. Oh, maybe maybe it's a fat rise from Lady eating?
Unknown Speaker 37:27
Um, sometimes. Okay. But still, if I take the insulin shot and bring it down, if you take
Scott Benner 37:33
it off. But yeah, but I mean, if you ate, I mean, using it as an example. I mean,
Unknown Speaker 37:41
you're like a grilled cheese. Yeah, eating grilled cheese.
Scott Benner 37:45
So then you've got butter, right? There's butter in there. There's bread, and there's fat from the cheese. So if you see a rise for grilled cheese, 90 minutes or so afterwards, then that could just be the fat from the cheese in the butter. I mean, have you ever looked at that? It's not.
Unknown Speaker 38:03
It's like with the GP, the GP comes into play. Right. All right. So then, like, it'll be a couple hours later, and I checked my sugar before I go to bed. And it's great. Right? 120? And I'm like, Okay, I'll, I'll go to bed.
Scott Benner 38:20
So you think that's yeah, I'm sorry. I mean, to speak over you. But that so that's possible, then that there are times when you're able to Bolus for well, because the foods digesting the way you expect it to, then there's times where the gastroparesis kind of clicks in. And maybe that foods just sitting in your stomach and not digesting then all of a sudden hours and hours later you start getting the impact from this stuff. Yes. And when you make a small Bolus, or a Bolus that you would expect to work during the day, it doesn't work at all. Right? Interesting. Have you ever just taken a like, a larger Bolus inside yourself? Let me make a big swing here. And I'll eat something if I have to if it goes down, like if you ever tried four units instead of two?
Unknown Speaker 39:03
Um, I don't think so. I mean, I think three was the most.
Scott Benner 39:08
I mean, that's the only thing I can think is that be ready with like, some fast acting carbs. And take a take a big swing at it and see if you can move it. Because it doesn't make I mean, listen, should you be hydrated you should be but it sounds up all night too. So it sounds like you are hydrated. Right? Right. So I mean, my first initial thought understanding that I'm not a doctor would be that there's got to be an amount of insulin, it's gonna move that number. Right, you know, and there could be a mean, are you 5056 Are you are you you're not done with your period yet, right?
Unknown Speaker 39:49
I've had the Mirena for since I had my youngest. Is that the ring? It's the IUD, okay, so I don't get period And I have no idea like, I shouldn't. I'm 56. They said, Actually, I should have it taken out. And he's like, oh, you know, you shouldn't get your period after now.
Scott Benner 40:12
Like, do you think you've been through menopause and don't know it?
Unknown Speaker 40:17
I have no idea. I wanted them to test me. Because I'm like, Yeah, I'm not dealing with periods, because they were always very, very bad. For me. That was the reason I had the IUD. And I got enough prep.
Scott Benner 40:36
Well, I mean, I wonder, is the plan like you pop it out, and then see if it's over? Because if it is, then you're done with those hormones from the IUD to, which would be nice,
Unknown Speaker 40:46
right? But if it's not insurance, it's like, yeah, you're 56 We're not paying for another Oh,
Scott Benner 40:51
you feel like if you stop it, you might not get it back if you need it.
Unknown Speaker 40:54
Right. So right now it's in an extra year. And the hormones just get less, he's like, it's not going to hurt you staying in longer. Okay. They're just less effective.
Scott Benner 41:08
I switch me so that it does have a shelf life, which doesn't work, but but that the the IUD does have a lifetime, and then and then it needs to be replaced. Like if you put it in when you were 20. There'd be an amount of time until you had to replace it. Is that right?
Unknown Speaker 41:25
Every five years. Right. So this is my third one I got when my daughter was born.
Scott Benner 41:32
Gotcha. All right. Well, I mean, so could be hormones. Could be gastro precess could be fat and protein from mostly fat from the cheese and stuff like that. And that example. I mean, I don't know why. There's not a Bolus that wouldn't work if ever tried doing like a Temp Basal on top of the Bolus. Yes. That that doesn't touch it either.
Unknown Speaker 41:56
No. But I'll try. I'll try a bigger Bolus.
Scott Benner 42:00
If it's not moving at all, and you're ended up like kind of nickel and diamond it to you. And it's too nice to just doing that anyway. I mean, I might try for to see what happens. That's all even if you can get it to move, but not go all the way down. At least then you'd have the indication. Wow, it did move it in, in a scenario where it normally wouldn't. I don't know. I mean, good luck. That's, uh,
Blue 42:22
I'll let you know. Yeah,
Scott Benner 42:25
I just that's like, why did you want to come on the podcast?
Unknown Speaker 42:30
Because I, you haven't had people talk a lot about teen pregnancy with type one. That was like, the main thing. And I think the guest I'm just looking at my notes. Yeah, I guess so. precice? Um, I actually try to I try to get my actual diagnosis notes. But he's dead also, because he was super old. So I can't I mean, and I hear, there's like Iron Mountain. And this is where the old records go. Well, no. Temple says, oh, no, we we've just we could render those after 10 years. They just
Scott Benner 43:14
try the records after 10 years. Yeah, they're destroyed. Well, so what did you want to talk about about about the teen pregnancy? Like what was the what sticks with you that
Unknown Speaker 43:23
that was the thing like how she had the nerve damage. Damage he had to be, I had to be induced three weeks, which was a big deal back then. Now they're like, oh, 37 weaker. That's full term. That's okay. I don't know. It's my, my second girl was a 12 week preemie. So she was a 28 weaker.
Scott Benner 43:45
Do you know what your like, what was your control, like during that pregnancy? Because that wasn't as long ago. So you were probably using fast acting insulin at that point, at the very least.
Unknown Speaker 43:53
Yeah, I wasn't pumping. Although, my doctor at Temple. I didn't, I didn't have her temple. But I like that doctor. She walked in. She didn't really talk to me. And she said to the Assistant, oh, yeah, we'll order her pump and whatever. And left and I said, I don't want to pump like that's another thing we're pumping. I was like a beach funny. Because like I told you before, I was always down AC we grew up going down AC as a family. And it's only like an hour half hour away from my old house. Right. And so I misunderstood about pumps. I thought it was surgically implanted.
Scott Benner 44:38
I'm not kidding. Yeah, they were gonna cut you open and put it in.
Unknown Speaker 44:42
Not like the actual pump but like the port. I thought the port was in plant like implanted. Okay, so I was terribly ignorant about that. Got it. Got me a pump and it sat in mind Yeah, in my room for months until they were like, Yeah, we're paying for this pump, you need to either use it or send it back. And so I sent it back.
Scott Benner 45:07
You said you didn't even even did you send it back thinking you were sending it back because you didn't want to have it implanted? Or did you realize you never realized that that
Unknown Speaker 45:17
there I never really checked it out. I was like, No, I'm not doing this. And the reason I got the Medtronic, this is crazy. I visited a friend who had the Medtronic, and this is all talk. He showed it to me. And he said, Oh, this is what I do. And I put my carbs in and I put my sugar in. And then it gives me you know, here it is. And then I moved this around. And I was like, what? So I went home and ordered it online myself.
Scott Benner 45:49
Where did you where's it surgically implanted? Is that the moment that you recognize that wasn't? Yes, yeah. How long was it between when you sent that first one back? And when you recognize that that wasn't the case?
Unknown Speaker 46:01
Oh, goodness, um, years? Why had? Yeah, I just had my daughter, my daughter, when they sent it. They sent it when I was pregnant with her. And I got my Medtronic when she was in fifth grade. I mean, not fifth grade, I'm sorry, kindergarten, for probably like, five, five years. Wow. But that's, that's all it took. I mean, it was ignorance. You know,
Scott Benner 46:23
it's not even ignorance. It's just that it's just, I mean, somebody, you were too young to probably say out loud. But you are wondering, like I said, as an adult, you would if you had that moment, as an adult, you would say, Hey, I mean, I appreciate this. But I don't want to have something surgically implanted. And the person would say, well, it's not surgically implanted. And then that would have been the end of it. But when you're a kid, you don't speak up. You don't I mean, right. And your life was probably pretty tumultuous by then. Anyway, I mean, your mom. I mean, you're basically I mean, you're reliving your mom's life at that point, as far as kids are going. So how did she handle that with you? Was she disappointed? Or was she supportive?
Unknown Speaker 47:02
About the baby? Yeah, she was sad for me.
Scott Benner 47:06
Okay. Does that make you sad then, to realize that? Because I mean, honestly, right, what your mom is saying is in any not your mom, but anybody in that situation? If I have a baby when I'm 16, and then my baby has a baby when it's 16. Like turn to and go, Oh, gosh, I'm so sad for you. What I'm saying is, I don't enjoy having kids. And you're not either. And I'm saying that about you and to you at the same time. Does that make sense?
Unknown Speaker 47:34
Yeah, yeah, it was actually didn't get to live her life.
Scott Benner 47:39
But do you think that was? Do you think she thought that was your fault?
Unknown Speaker 47:44
Oh, no, no, yeah, me later. I was the one that was planning
Scott Benner 47:47
the other ones then.
Unknown Speaker 47:49
But I was like, 26 or 27. By the time she had me.
Scott Benner 47:54
Do you think she thought that of the older ones though? Like these kids ruin my life? Um,
Unknown Speaker 48:02
yeah, I think she was more angry with her mother for finding out that there was birth control out there. But her mother did not tell her about it. Didn't want to give
Scott Benner 48:11
it to her. Nope. How? How is your mom alive?
Unknown Speaker 48:17
No, no, my mom died in August. I did tell you that. So So I remember with the Dexcom thing going down and all that crap. Yeah,
Scott Benner 48:24
I do. I'm so sorry. But how old was she when she passed? 82 for cancer, right?
Unknown Speaker 48:31
She beat the cancer, right? She died from everything else she had. She basically couldn't breathe because of her heart.
Scott Benner 48:38
Okay, should she have like congestive heart failure?
Unknown Speaker 48:42
Yes. And her heart only function that 20% And she also had stage four kidney disease that she was she was staying off of dialysis. So she was like on the cusp. Right? What she had said to me, I won't do dialysis.
Scott Benner 49:00
Okay, well, did she was she a smoker?
Unknown Speaker 49:05
Until she got sick? Yeah, yeah, six, five years. Yes. She got sick. April 1 2017 is when I start taking care of her.
Scott Benner 49:15
So my initially my question was going to be She's mad at her mother for not telling her about birth control. How old was your mom when your mom was 16? Like, what year was that? Do you think?
Unknown Speaker 49:25
Oh goodness. She was born in 1939. She had her daughter. She had my sister when she was 15 she was 15 Yeah.
Scott Benner 49:33
That's a Yeah, that's like 50 for like 1950 for
Unknown Speaker 49:36
my sister. Yeah, my sister was born 55
Scott Benner 49:39
Okay. Oh, yeah, I bet you nobody talked about anything at that point. No. Right. Interesting where they were you was your mama Philly girl to where they did
Unknown Speaker 49:50
young family? Yeah, yes. I finally got out to the burbs. But
Scott Benner 49:58
well, I do know what you mean about the yum. I mean, my mom just finished her chemo. recently. She got six rounds of chemo. She's still getting an infusion of something. I actually know what it's called. I can find it here. But it's not the chemotherapy anymore. It is. Where it is that Avastin Oh, she told me what I thought is she just texted me last night. Is that an infusion? Yeah, it gets infused. A drug used to treat what age related macular degeneration. To treat diabetic itis he's over how it's used for this. She also could be wrong. My mom's something my mom says the wrong drug names. Sometimes her nurse tells me all the time. She's like she said she has this but she doesn't. It's this and then they laugh and I'm like, my mom laughed. She's like, I can never remember. But she don't because she's not that oh, she's 79. Right. She had I would say that back in October. Before we understood what was happening. I thought she was dead. Like I looked at her. I was like something she's this is it. And then she ended up having a full hysterectomy to remove, among other things, an ovary that had a tumor on at the size of like a softball. And then they found it had metastasized and go on to her uterus as well. And it jumped out to her omentum I believe I'm saying that right. It's kind of lining inside your body. They cleaned all that out. They fixed the hernia while they were in there. And then the next day, I'm talking to her on the phone and she's like, I'm doing good. And I was like how's the pain? Because no pain really? And I said oh they got you on the good pain meds mom. She goes no, I'm taking Tylenol and ibuprofen I was like no swear to God she didn't take anything but Tylenol ibuprofen after the surgery. But different error my mom and so yeah, and then you know she convalesce two days in the hospital, they sent her to the place where she's living now. She did physical therapy for a little bit kind of recruit like just rebounded from the from the surgery for maybe three, four weeks started on chemotherapy. She did six rounds of that. And that's you know, she started though, she's hoping her hair is gonna come back soon. She's not the same person she was six months ago. And it's, um, I mean, it feels like it aged or a decade and like a half a year. But she's okay. And you know, living our life. And it's, it's kind of crazy, honestly. So
Unknown Speaker 52:40
it's sad when they're not the same people like I took care of my mom. She lives with me the last three years of her life. And you know, yes, it's different.
Scott Benner 52:51
No, it definitely is. I mean, it's, I mean, being alive is better than not being alive. I'm certain, but I will, I will have to say you don't know. I guess.
Unknown Speaker 53:01
Towards the end, my mom was like, I'm ready to go. I mean, and like I said to my friend recently, I was like, I look at my mom, because even though she was in the next room, I would be watching TV in the living room. She had to she basically lived in her room. She had a hard time making it out to the kitchen. She forced herself to get into that pool one time. Two years ago, thank goodness. Because that was the only time she made it. Yeah. But her texts, like, you know, our texts back and forth would be fine. But the last text for the last couple months. Not good. It
Scott Benner 53:41
makes sense. I know my son's graduating from college this this weekend. And my mom can't make it to that. And, you know, and I know it is it sucks because I do. I do wish everybody wishes she could come and it's just not. It's a few hours away, and it's just too much. You know, even the traveling and then being outside and moving around. It's just not gonna it's not gonna work. So it's I, you know, you're not wrong, like it's different. Two years ago, my mom could have just come to my son's graduation, it wouldn't have been a big deal.
Unknown Speaker 54:15
Right? Yeah, it needs to be where even the car rides are too. Too much for them.
Scott Benner 54:19
Yeah, she's thinking of moving. And just the and she's thinking of moving pretty far. And, and to live near my other brother. And even just the idea of how to transport her that far. Is it's a bit of a problem. Like, we're not 100% sure how to handle it. You know, I joked with her and I said I will put you in a trailer with some hay. We'll just tell you there. She said I'm not doing that. I was like, Alright guys, it's viable. It would work. You know?
Unknown Speaker 54:50
It was Yeah, Minnesota.
Scott Benner 54:52
Like Wisconsin. It's gonna be like, it's gonna be like 13 hours. So it's gonna be a long ride and I don't think putting on a plane is gonna work.
Unknown Speaker 55:00
So, you know, we're probably gonna get an ambulance but not for 13
Scott Benner 55:03
We're probably just gonna take, you know, probably drive and drive and stop and drive and it's gonna take longer than it should as well. So, but anyway, what else? Let's see, what do you use? Now? You have Omnipod? Yes. Dexcom? Yes. Excellent. Are you gonna get an algorithm? Do you use loop? What do you do?
Unknown Speaker 55:23
I don't use. Listen, I got brain fog. I can't even, you know, thinking the name of a toaster, let alone, you know, looping? I can't. I'm not doing that. Yeah. My older girls in IT tech. But yeah, I wouldn't put her through that, would you? I'm waiting. So I'm a little bit jealous that I see you have the five and I'm like, send it to the people that aren't looping first. That's not right. I mean, first, I thought they would have sent it to you first.
Scott Benner 55:50
Well, they didn't send it to me. I, I got it the way everybody else gets it.
Unknown Speaker 55:54
So I know. Yeah, you should assign it to your first.
Scott Benner 55:57
Well, they should have sent it to me first. There shouldn't be a special page in the book where I get it. I hear what you're saying. But that's not what happened. Now we just I went right through my insurance and got it through us Med and did it the same way everybody else does it. It's just I just got lucky and my insurance covers it. But I can so I'll tell you the story. But you have to you have to agree not to tell anybody in the whole world. It's just between you and I because your recording is not going to come out for months. Okay. So I need this to work in the timeline of what's happening. If we agree, I will continue.
Unknown Speaker 56:31
i What do I do this? Yeah, you just cross your heart.
Scott Benner 56:36
I swear to tell the truth. So artists promise this weekend. And she has this little clutch. She's already upset that her phone won't fit in very well. And so thing comes yesterday, on the pod fives here, we get all set. Like you know, I go online, I do the the training. We're all ready to go. And she's like, let me get a shower, then we'll put that on. I was like, Okay, great. And she just she comes downstairs like, you know, just the herself sits down next to me. I pull it out of the box. I put the PDM down next to it. And she goes, No. I would watch she goes, nope. I was like, wait, what she was, I gotta carry that with me. And I said, Yeah, she was No, no, I'm I'm out. Just like that. She's like, I'm not doing this. And so I'm like, wait, wait, what's wrong? Because I don't want to carry something else. And. And I said, Well, Arden listen, here's the situation we're in right now. Right now you loop with arrows, pods, you have the orange link that connects the phone to the CGM to the out, you know, to the pump and all this stuff. And I said, too frequently. You can wander away from the the Orange Line, which happens to people all the time. It's,
Unknown Speaker 57:48
it doesn't you have to carry that also. Yeah.
Scott Benner 57:51
And I said, so I said, not going to be good. You going off to college. But the thing that if you wander away from it, it's just not going to work. I said on top of that, you know, Omni pod five is it's a retail system, right? Like, it's just gonna come out the box that's going to work. You don't need to own a computer to build an app and all this stuff. And I said in a perfect scenario we want on the pod five to work for you so that you can go to college with it. I said, so we are going to do this. And hopefully they'll come out with the iOS the Apple app for the soon because it came out with an app for Android. It just isn't for Apple yet. And Arden has an iPhone. I said if it's that big of a deal, I can get you an Android phone tomorrow. And she was Oh no, she's like, I want one. I was like I noticed that I teased her about it. She wasn't switching phones. I said, so what I need is two months with this on the pod five. So I can completely understand it. And we can make a decision about whether or not this is right for you. And I said and you're leaving for school in September, it's may now it's the middle of May, I got the middle of June, middle of July, then you're leaving a month and a half later as this is when we're doing this. You know, I said I don't know that two months from now we might not say okay, well, we're not going to do that. I said if that's the case, then we'll probably go back to looping but with the dash pods, which is something that's under development in the do it yourself world and should be ready to go in a few months. I said but we'll have options at that point. And we need options and we need to understand our options. We can't just a week before you're going to school say oh throw the on the pod five on now. Like that's not what we're doing. So my wife said I will talk to her and I was like okay you know, it's gonna be fine. It just let it was I think it was the prom and the in the space and her clutch, threw her off and then I'm being fair. She doesn't want to carry something. Something else. I can't blame her. I wish it would have come out with an iOS app at the same time as well. But you know, summers coming. She won't care about carrying it. I don't think once we get past the prom, so I'm still very hopeful. I'm being a 100% Honest, I want Omnipod. Five to be the answer for her. I think it would be great for you, honestly.
Unknown Speaker 1:00:05
Oh, yeah, my mind is working on it. Yeah. And actually said, she's like, You should get it. I don't know what she's done. I don't know why she thinks I would get it soon. She said, If you don't hear from me by the end of may call me the first week of June, because I want you to be on it for a few months before we get your new data.
Scott Benner 1:00:27
Yeah. My next appointment, Jenny and I have been talking privately for like a blast day and a half, like just texting about it back and forth. And it's going to be it's very settings oriented. So as Luke by the way, if your settings are wrong, a loop loop doesn't work. It just doesn't. And same thing with this. And same thing with all these algorithms, you're gonna have to have your settings right, or these things aren't going to work. And, you know, we were just jamming I were talking an hour and a half ago, and I said, such an exciting time, like we're learning about this new system, we're going to be able to help people with it in the future. I'm really excited by I don't know if Omnipod five is going to replace loop for people who are like big time managers of their diabetes. You know what I mean? who are who are like rolling along with a five, three, a one C like it's nothing like I don't, I don't know that any out of the box algorithm is going to be good for those people. But for the masses, for most people, it's going to be, I think, an outstanding improvement changer. Yeah. Just super excited for everybody.
Unknown Speaker 1:01:29
My endo didn't even want me to go on the pod a few years ago, because she wanted me to go, that's when that I'm casual like you. Yes, yeah. I made it to she, she was adamant. And I said, Listen, I'm about to hang myself with this tubing. I am not doing tubing anymore. So she, you know, she's I'm not going to let her dictate what I'm going to use. Right. And I feel bad for the people that get pushed around.
Scott Benner 1:01:55
I happens a lot. I think honestly, I think doctors have preferences on pumps. And they push them on on their patients. I think that happens a lot. And most people don't have the the nerve to say no, or push back
Unknown Speaker 1:02:09
because they don't know. I want to tell you about my girlfriend. This is another thing. I have a girl that she's my age. I've known her since second grade. And she had skin cancer. And the immunotherapy attacked our beta cells. Now she's moved one.
Scott Benner 1:02:30
Now she's insulin dependent now. Yes. Wow.
Unknown Speaker 1:02:33
So this has been for three years. So I'm like, well, you're lucky that you know me, you know, so I've been trying to leader, you know, and teacher. And I went to the I went to this one appointment with her when we were talking about the pod. And I'm talking to the, you know, the nurse practitioner, which I'm sorry, I don't deal with nurse practitioners. I have an endo, I'm just whatever. I'm fussy that way. And she says, you know, she's trying to tell her some BS. And I'm telling her right back, this is how it is. And she goes, like, I have my pod here. I know it's here right now. Yeah, I always wear them where they're visible, because that's how you find others. And I looked, and she looked at me and she looked at my pod, and she knew she wasn't getting overall me. And I'm like Now this, this and this and like what you're saying is wrong. And she's gonna get the pod and that's just the way it is. And yeah, she didn't like that.
Scott Benner 1:03:38
How many people do you think you've helped with their diabetes?
Unknown Speaker 1:03:42
Um, I, I try. I mean, I use I used to actually take care of my mom's take two, she was insulin dependent. And I got her the Dexcom which made my life a lot easier. Yeah. So a few I hope I, you know, I tell everyone, whether they listen or not, you know, like, come on, you gotta listen to the juicebox. Like, it's going to it's going to help you What do you got? I'm sorry. My one friend was here one day. I'm gonna call them out. Jim and drew not that the Listen, but they tease they're the ones that tease me and Amy and cost the, you know, juice box posse. They're like, we swear you're getting paid for, you know, all this app talking about them all the time. But it was it was funny. Drew was here one day, and I said something about the Juice Bar. I'm like, Listen, you should listen to this episode. He's like, listen, does he have type one? Because he's very high strong. He says, does he have type one? And I said, No. He manages his daughter's type one. I listen and anybody that doesn't have type one, and my daughter my 17 year old who she thinks very quickly, and she turned around she says, Oh, so your endo is a type one. And that does show Add him right down.
Scott Benner 1:05:01
It's Do
Unknown Speaker 1:05:03
you don't want to help?
Scott Benner 1:05:04
Yeah, yeah, I was gonna say Do you think it's just an excuse?
Unknown Speaker 1:05:08
Yes. Right.
Scott Benner 1:05:09
I mean, this person you're talking about. I'm not trying to ask somebody but like, I mean, are they walking around with a five, eight a onesie? And don't go over one ad after a meal and stuff like that?
Unknown Speaker 1:05:17
No, no, I used to I used to follow him. I used to follow each other. And then he's like, Yeah, you're getting your peripherals taken away? Because I would be like, dude, that you know that you got to stop the arrows. No, you don't want to hear it?
Scott Benner 1:05:32
Yeah. Well, that's what I was gonna say is that I think it's not everybody's interested in, in helping themselves, honestly. I mean, because What's it matter? If it's first of all, if it's me, or for somebody else? Now? What's it matter? If they have type one, or they don't? If they know what they're talking about, then great. You need help. Maybe you don't know what to do? That person doesn't know what to do. So who, you know, that's, I don't know what that is, you know, if it's ego, or if it's pride, maybe or something. But I think you're gonna think you're gonna find that a lot. And I do. I do also believe that that's part of the reason why you have to reach people earlier. So that they don't get so set into this. There's no, because I guarantee you what he really thinks is, this can't be better than this. I am working very hard. If it was, if it was possible for this to be better, it would be better. And so I know, this is the best I can expect, which isn't true. And it's a shame, but I understand why people think that way. Yeah. So I mean, you can't help everybody, which is, is a it's a terrible thought, but it is true. So it's just it's nice to try to do your best and you reach the people you can reach and the ones you can't. I mean, it's they're still adults, right? They can decide for themselves. Yes. And he's right. I don't have diabetes. I don't know what that means. But he's 100%. Right? Yeah, yeah. Lucky me. Yeah, I should knock on something right. It would make,
Unknown Speaker 1:06:54
it just amazes me, the people in the group that, oh, that find the juice box, like, while they're at the hospital, you know, and their kids in intensive care. I'm like, Oh, my God, these kids have such a wonderful chance with their diabetes. I mean, it's amazing to me. So that's, you figure. This is another thing. I had my daughter in November. So I had diabetes for whatever, since March. And I moved out a week after I turned 17 with type one with a baby. Well, it was my mom, my mom was petrified. So I'm basically, you know, taking care of myself the whole time.
Scott Benner 1:07:41
Well, what you just said about like, people now finding the like finding the podcast in the hospital, I hear stories all the time, like my kid was diagnosed on Tuesday and Tuesday night while they were sleeping. I was listening to a podcast. Yeah. But that I what you said in there, I thought it was really thoughtful. It was about the, it was about hope and possibility. Like you said, like, these people have a chance like it. It's not, everybody's not going to come out of this, okay? You know what I mean? And for some people, it's going to go, okay, for some people, it's gonna go great. For some people, it's going to be up and down. For some people, it's gonna go terribly. Some people are going to have horrible, you know, complications. and anywhere in between those things. It, there's no guarantee of which person you get to be in that situation. So the sooner you understand, and the sooner you work towards putting things into play, that are going to help you with your health, the better to me, it's the sooner the better. You know, because you lose too many people to that feeling of like, well, I'm trying very hard. And this is as good as it is. So this must be what it is. And just oftentimes isn't the case. So yeah, I like the idea that at least people have a chance and the better the chance they have that the happier it makes me.
Unknown Speaker 1:09:01
So yeah, I feel bad for the parents sometimes, though, that they're like, I feel like they're constantly like watching these numbers and feeling like they're not doing well.
Scott Benner 1:09:12
Yeah, some people can get overwhelmed by it. That's for certain, but the truth is, I mean, I'd rather if I'm being honest, I'd rather than be overwhelmed by trying, then overwhelmed by it just happening to them and failure, Capcom, because you're gonna get overwhelmed one way or the other, you might as well be overwhelmed going forward. You don't I mean, but they do have to, I mean, if any of them are listening, at some point, you've got to find a balance. You got to find a way to try hard to care and not make yourself mental because there's no win in that at all.
Unknown Speaker 1:09:47
So here's one thing you said to me that that helped, because I do people think I'm nuts. I do. Watch my number constantly. Does it help you know, I mean helps me with my sugar. Mentally it does not help me. I hate diabetes. I hate everything about it. People that say, oh, diabetes is fine and diabetes made me who I am today and I'm a healthier person and and I just I don't feel that like I was always I was always a sickly actually I didn't start out with the first three years of my life. I throw up every single thing that went into my mouth. I was very sickly child. I was sickly strep throats my whole I missed so much school. So I've been sick my whole life and I'm tired. Yeah.
Scott Benner 1:10:37
Now well, then why do you not? So listen, you didn't answer me earlier. So if you don't want to, you don't have to, but what's your what's your a one say?
Unknown Speaker 1:10:45
Am I a one C 6.56 by five, okay? And I keep it in a six mid sixes
Scott Benner 1:10:51
slot is really good. But why are you having to stare?
Unknown Speaker 1:10:56
I one thing you said to me which it made sense. You were like, Listen, you have your alert set. You don't need to look at it. Alert and tell you. So I'm like, Okay, let me do that. Let me not have my phone on with my numbers showing while I'm driving. This is how bad I was. So I'm like, Okay, let's but then it aggravates me. Okay, the alert, I have it set 80 to 130 the ad is because of my gastroparesis because I need to have time to catch it. Yeah. Okay, say, okay, it goes off, and it's 130 Diagonal up. And I'm like, I could have stopped that arrow. If I had seen that sooner. Now. That's what was pissing me off. So I'm like, okay, Scott says don't look at it. So that's helped. That has helped
Scott Benner 1:11:52
good, but I think you're just torturing yourself. I am torturing myself. You're no matter what happens. You're gonna find a reason why that shouldn't have been what you did. Yeah, yeah. That's not something I can help you with. That you get a therapist for maybe?
Unknown Speaker 1:12:10
I haven't got with my therapist. I haven't gotten into my type one to modulate. Yeah.
Scott Benner 1:12:14
But you know, well forget type one. Just how come you want to punish yourself? Is the is the is a good question, right? Because, because 130 is not a bad blood sugar. And it's all mindset, like you're looking at it and you're thinking, Oh, see if I would have seen this an hour ago, this wouldn't have happened. When you could just be saying, I'm so glad I set my alarm at 130. So I can address this and put it right back to where I need it. So it's all just how you proceed after you see the number.
Unknown Speaker 1:12:42
Yeah, yeah. And that's one thing. I also like you have a very healthy mind. I hear a lot of people on the podcast, some have very healthy mind. You can tell the difference between the people. You definitely can I know. I? I do not. And I know I do mental health problems. Right in my family and the bipolar. I forgot to bring up the bipolar. Yes.
Blue 1:13:06
And depression for you. Yes. Bipolar
Scott Benner 1:13:09
depression for you as well,
Unknown Speaker 1:13:11
since I was 17. Yes. So it's been it's been a rough
Scott Benner 1:13:16
road. Is that where the sex came in Young? Isn't that isn't that a side effect of like, Bipolar depression to like, act like I don't want to call it acting out sexually. But isn't that one of them like sexual? Like early sexual? I think I think
Unknown Speaker 1:13:31
that was more trying to because my dad was wasn't around that long. I mean, he lived with us. But the dynamic at home, my parents weren't really together. I think like the, I don't know, like girls that don't have good relationships with their fathers, then they seek it with guys and they have sex. That's why yes, I became sexually active at 14 So even before, even before,
Scott Benner 1:14:05
so it's not like because it says here in a person with bipolar disorder. They may also lead to hypo sexuality, which is a low or nearly non existent sex drive. hypersexuality may experience symptoms such as What about HyperX out here you go hypersexuality or an increased sex drive can be a sign of manic episodes.
Unknown Speaker 1:14:26
Yeah, I've been through that. Yeah. Talk about when I ran the escort service, okay.
Scott Benner 1:14:38
I don't think you should say something like that out loud. No. Okay, well, because I mean, that could and I wonder now that I'm asking, Does your mom have bipolar or? No, no, she did.
Unknown Speaker 1:14:53
Um, mental health issues right. And my family like my uncle is schizophrenic. hmm. Um, to the point where he was, he was really, really bad. And he's managing now he's, he's, you know, elderly now he's the only one left out of the siblings. He's in his 70s.
Blue 1:15:15
But um,
Unknown Speaker 1:15:17
was it? Oh, my sister. See, I have three sisters. And we don't none of us speak. But the one is paranoid. paranoia, very bad and bad mental health. Real like, yeah. Yeah. Bad.
Scott Benner 1:15:34
I understand. I think that's all in some way related to inflammation. I don't know anything but always
Unknown Speaker 1:15:42
formation. So that's what they were talking about this type three. Did I hear that? On the juice box? You probably did. The Alzheimer's type three. Yeah. I'm like, no, no type threes are the people that our family of type two type one. We always called type threes now that like, oh, type three is Alzheimer's.
Scott Benner 1:16:04
That's a colloquialism. Not a scientific distinction. But I understand what you're saying. And I hear you. Alright, well, blue. We've done a lot here today. Do you think we've gone over everything? Are you looking at your list? Have we covered what you want?
Unknown Speaker 1:16:18
Oh, yeah. So I feel that before I was on a pump list, mainly before the CGM for 28 years, I was MDI. And I'm kind of glad I had that time to enjoy where diabetes wasn't right in my face. Because I feel like now it's like, right, in my face.
Scott Benner 1:16:39
Do you think that you would have preferred that over being diagnosed today and going right on technology that probably would have stabilized things better? Um, whereas this just based on the reality of what your life was, and where you're trying to find some kind of happiness and good news?
Unknown Speaker 1:16:57
Yeah, I think it's the second part. Yeah. I'm also very jealous of the people who are diagnosed later in life.
Scott Benner 1:17:02
Because they got to live without it for a while. Yes.
Unknown Speaker 1:17:05
And they got to do things. They got to have the kids they got to go to college, they got to go drinking. Without what you know, like, I have a lot of anxiety over getting anything go into carnivals going to concerts, like any any kind of outing, I immediately panic just thinking, how am I going to do this? Yeah, yeah, I'm sorry. One thing I wanted to bring up. I was trying to find the medical, I can't get any medical notes. But this is like strange. Back in 1988, I'd say 8089. I think it was 88. So you figure out how to take one for six years by then I take a ride down the shore with my dad for the day. And I end up stopping by my friend's summer house down Wildwood. And they're like, Oh, you could spend a night when I go okay, Dad, can I spend the night you know, I'll get right back with them tomorrow. And I had nothing with me.
Scott Benner 1:18:14
But if anything at all. Yeah,
Unknown Speaker 1:18:16
we're tester. No insulin, nothing. I don't know what I was, I guess I wasn't think like, I don't know what I that far removed from it. But we I mean, I was so bad. And I had to be a dk. I had I'm sorry. I had to be in DKA. Because we were out on the boat. And I was actually putting my hands in the water and like trying to wet my mouse. Okay, with the saltwater. So what what they did was they took me to the hospital. I said, I have to go to the hospital. And they they gave me insulin. And I said, Well, I got I got what I came for, I needed the insulin to bring my sugar down. So now I want to leave. And I left. And they said we really like, I don't remember hearing this was a long time ago hearing like DKA or stuff like that. But I left I said I got what I get I need an insulin, you gave me insulin. And now I'm leaving. I'm psyching myself out. And that's what I did. And I really tried to get those notes because I was very curious to see what they said how
Scott Benner 1:19:31
they talked about you like in the notes.
Unknown Speaker 1:19:33
Yeah. What about Yeah, or to see what my sugar was? Or any, you know? Yeah, no, I've never been in DKA. Aside from maybe that time that I know, like, I've never been in DKA. Yeah.
Scott Benner 1:19:44
It's interesting. Well, it's a whole different world. I mean, just being diagnosed. I mean, 40 years ago, it's just, it's completely different. I mean, you describe a thing that people who are diagnosed today don't even recognize honestly, besides from the word insulin and diet biddies, there's nothing similar to, to how you had diabetes and how somebody who's 16 today and gets it will have it? Absolutely, it's really kind of a, it's kind of amazing to be alive and a time to see something, progress so drastically and you know, inside of a lifetime, you know, and I think it's possible that in the next 10 years, you're going to see a leap bigger than that, just for these algorithms. I mean, if they could get some of these insulins to work a little more quickly. You know, we've tried fast was terrific, but whatever that is that they put in it, that makes it burns are in a little bit, so she can't use it. But such a big deal. Just the insulin working and work, what doesn't work, that one's faster. It just helps with not having to Pre-Bolus as long as Pre-Bolus. You don't? You're in a different situation.
Unknown Speaker 1:20:52
Yeah, I just do normally 5050. Right, over like a half hour.
Scott Benner 1:20:58
That's another reason why the algorithm is going to work well for you. Because you're not worried about Pre-Bolus. Yeah, because that's going to be still I mean, my guess is I haven't used it yet, obviously. But based on what I know about looping what I'm hearing about on the pod five from people who've just gotten it just a week before I have it. For Arden, I think Pre-Bolus is still going to be a big deal. You know, so even if your insulin work more quickly, again, that's another big leap for people, like you know, that suddenly meal spikes, not going as high as they used to. I mean, that that's a big piece of it. Yeah.
Unknown Speaker 1:21:34
It makes me angry that they still tell people, there's going to be a diagnosis in five years, people that are just being diagnosed. I mean, I think that's mean, do you
Scott Benner 1:21:44
think they're still telling people there's gonna be a cure in five years? Yes. Really? Yes, that would be stupid. But it's also an indication of turnover in its turnover in marketplace, right, like doctors and nurses and health care providers, new people come in new people come in, they hear the same stories, and they just recant. They just, they just regurgitate them, you know, like, Oh, I heard and five years is gonna be so or maybe they even heard, Oh, I heard in five years, that there'll be an algorithm that will, you know, you won't even have to tell it that you that you ate. And that you know what I mean, like, and then they just misrepresent what they've heard. And, you know, it mean people talking about, forget one of the algorithms right now I let or something like that, like, you know, I'm seeing I'm seeing a push in, you know, when you see the other side of diabetes, you kind of see, like, I'm seeing a push in them wanting to be on, like, they're getting the word out again, which must mean they're getting ready to do something or say something or whatever. But I go back, like, I've been hearing about this for 10 years. You know what I mean? Like, fair, spare takes however long it takes, and I'm grateful someone's doing it. But someone here hears about it 10 years ago, and they talk about the same exact way as they'll talk about it when they hear about it today. And nobody knows what they're talking about. And I don't know if people are running around promising cures, or if they're just saying half baked stuff that they heard somewhere, you know, so
Unknown Speaker 1:23:08
that's another thing. Like the thing that makes me angry about type one is that are people saying stuff? Like, and I said this to my girlfriend the other day? I don't know about my Allume myeloma, is that myeloma, myeloma? Um, so I'm not going to say things that I think I know about it. People do that. That's what they do without the IB,
Scott Benner 1:23:34
you wouldn't. You wouldn't roll into the food court and you would like, want to hear my loose understanding of your cancer. Yeah.
Unknown Speaker 1:23:41
Right. You know, people would just like, like, the episode that you have with the nurse was, you know, sure opened her eyes, didn't it?
Scott Benner 1:23:52
Everybody gets everybody learns. It's always there still learning? I mean, not everyone's going to understand everything from day one. It's just one of those, right? Where where it becomes dangerous is when people are people and they hear enough of something that they think they understand it and then they start talking. And you know, and you got to keep your mouth shut. You're talking about and you're talking about people's lives. It your points well taken, no one would run around talking about, oh, you know what I heard about your cancer. Somebody heard that if they heard you had multiple myeloma, and I heard the words multiple myeloma in a radio ad, I certainly wouldn't start regurgitating what I what I had heard out loud, but nobody has any trouble for the most part. Yeah, talking about diabetes when they when they don't know what they're talking about. That's for certain. All right, blue. This has been delightful. Thank you very much for doing this with me. I really appreciate I have the strong feeling we could just keep chatting. And I have. I'm looking at my calendar and I gotta make it to my next thing. So I have to say goodbye. But I really do appreciate you doing this with me. Thank you so much.
Unknown Speaker 1:24:59
Thank you for having me, of course.
Scott Benner 1:25:05
First, I'd like to thank Blue for coming on the show and sharing her story. She's just one of my favorites. And want to thank Dexcom as well dexcom.com forward slash juice box, get your Dexcom G six right now find out about the G seven. Let's get going on the pod. How about the Omni pod five on the pod.com forward slash choose box or the Omni pod dash? Both of my link and of course us med get your diabetes supplies the way my daughter does from us med us med.com forward slash juice box or call 888-721-1514 Thank you so much for listening. I'll be back very soon with another year of the Juicebox Podcast. Just a few more episodes left in 2022. And then the ninth year, the ninth season of the Juicebox Podcast begins on January 2 2023. And we're going to come out of the gate Swain. Understand. I've got Kate on the show. Kate is a quadriplegic who has type one diabetes, listening to her story of how she handles her life is just astonishing. Steven is going to be on the show Stephens had type one diabetes for a very long time very smart guy. I really love talking with him about type one. We're also going to do a beautiful young lady 13 years old, who's managing your diabetes so so astonishingly, well, she just came on the show and recorded with me recently, I had such a great time with her. I told her I was going to start the season out with her. Jenny and I are going to do a three series, a three episode series about the math of diabetes, how to set up your insulin to carb ratio, your insulin sensitivity factor and your and your Basal sorry, it's really late at night here. It's just after Christmas. And I don't have it all. You know what I mean? I'm tired. Anyway, I've got big things planned for the podcast for 2023. I really appreciate all the support you guys have given me so far. You know, when I tell you there's another season of the podcast? I mean, it's a lot. I do. Think we delivered Spotify sent the little notification, I can find it here for you. You don't care. Are you still listening? Doesn't matter. I got this from Spotify. It says you created 12,182 minutes of new content in 2022. And this was I got this a couple of weeks ago from them. Anyway, it goes on to say that is more than 99% of other creators in the health and fitness category. It's pretty awesome. They also told me that let's say you're in the top 15% of most followed podcast. So let me thank you for that. It also says here your podcast was in the top 15% most shared globally. Astonishing. That's you guys too. Thank you very much. What else they tell me. Hold on, I have to look at a different screen. Sorry. I'm probably looking away from the microphone. Like this is it really? You know, just that amazing stuff about you guys in the podcast? We're not going to quite make it. But it's okay. I know mind. record setting year for the podcast last year. Let me just tell you, I don't usually tell you guys this stuff, but you caught me late at night. And I'm uh I'm a little giddy. Let me go back here to January 2021 On the first and then I'll go to the end, which would be December 31 of 2001. I will tell it I want to know how many downloads there were in that timeframe. It's telling me right now. The number is populating in 2022. The podcast got 2,157,162 downloads or streams combined. That's astonishing. Makes the podcast very very popular. And me very very grateful. I can't I have to be honest with you at the end of 2021 I was like I cannot believe this many people listen to the podcast this year. Going back to my little like isn't this machine here 2022 January 1 Two today, which is the 27th of December I can't give you the entire there's still four days left but 2022 up to this 187 $4,886,470 are streams and I say this once in a while throughout the year but it just begs repeating podcast don't grow because of marketing because on social media, from me, the it grows when people shared it grows when you share it on your social media, or were you tell somebody about the podcast or share it with your doctor or a friend or someone you bumped into at Costco. That's how the podcast grows. And so this amazing growth, it's you guys. And it's, it's not something I can properly say thank you for, I'm trying. But I haven't found a way yet to say that. I can't believe for instance, that your podcast was in the top 15% most shared globally, like that's straight from Spotify. And you guys don't even really listen through Spotify. Most of the listeners are listening in Apple podcasts. So anyway, if you're not subscribed right now, please subscribe on your favorite podcast app, your favorite audio app like Amazon Music, Spotify, Apple podcasts, so many others. Continue to tell people about podcast, it helps it grow. Thank you so much for supporting the sponsors. That's amazing. I've had longtime, terrific sponsors, who buy ads on this show, and it keeps the show free for you guys. And it keeps me in a situation where I'm able to make episodes, you know, multiples a week because of the podcast, getting that support and because of you then going out and supporting the advertisers. They don't just buy ads because nobody clicks on them. They you know, much like the listens. You guys are the engine that drives it. I think I'm gonna put out one more episode this year. Maybe to have to look at my to look at what I've got. And then we're going to start right up. Like I said, January 2, ninth here. Really? I can't I can't even tell you how stunned I am to be able to say that. It um gosh, I guess about halfway through 2014 I decided I was definitely going to make a podcast. And me God, we just finished 2022. Seven years, like seven straight years. But eight seasons. 2015 was the first 2016 1718 1920 21 this year 22. Eight full years of the podcast. Today's episode, my goodness episode, I'm trying to find out I grabbed the wrong mouse. Today's episode was 816. We're gonna get 1000 episodes, we're gonna hit 1000 episodes and 2023 we're gonna hit. I mean, in just a week or so 10 million total downloads since 2015. That's crazy time. And we just missed 5 million just in 2022. Can you imagine that right now the podcast just about has 10 million downloads, and 5 million of them came in the last 12 months. It's there are days that I feel like I've been doing this forever. And there are days I feel like I'm just getting started. And I think the podcast maybe is just getting started. So I don't know if we're gonna do 5 million in 2023 or 10 million or this is the last year. I have no idea. But I'm having a great time making the show. I can't tell you how grateful I am that you enjoy it that you're supporting the podcast in so many different ways. Please go check out the private Facebook group which is astonishingly supportive and amazing. Juicebox Podcast type one diabetes, absolutely free. 33,000 members between 80 and 110 new posts a day. So many people in there some supporting so many people with so many different topics all about diabetes. I've been talking too long. I'm gonna go. I really appreciate everything. I hope that's obvious. Again, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
Please support the sponsors
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!