#1764 Tandem Kids: Leah
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Scott interviews 8-year-old Leah at the Friends for Life conference. Leah was diagnosed with Type 1 diabetes in August 2024 and shares her perspective on transitioning to life with a pump and CGM.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner (0:00) I attended my first ever Friends for Life conference in July 2025. (0:05) And while I was there, I interviewed eight children of various ages, all who wear a Tandem pump. (0:10) I wanna thank Tandem Diabetes for sponsoring this short episode of the Juice Box podcast. (0:16) Check them out at tandemdiabetes.com/juicebox. (0:22) Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise.
Scott Benner (0:28) Always consult a physician before making any changes to your health care plan. (0:35) The episode you're about to listen to is sponsored by Tandem Moby, the impressively small insulin pump. (0:41) Tandem Mobi features Tandem's newest algorithm, Control IQ Plus technology. (0:46) It's designed for greater discretion, more freedom, and improved time and range. (0:50) Learn more and get started today at tandemdiabetes.com/juicebox.
Scott Benner (1:06) Are you nervous?
Leah (1:07) A little bit.
Scott Benner (1:08) Yeah. (1:08) I'm a little nervous, though. (1:09) Don't worry about it. (1:10) It's okay. (1:10) You ready?
Scott Benner (1:11) Okay. (1:12) Hi. (1:13) Hello. (1:14) What's your name?
Leah (1:15) My name is Leah.
Scott Benner (1:16) Leah. (1:17) I'm Scott. (1:18) It's nice to meet you.
Leah (1:20) Nice to meet you too.
Scott Benner (1:21) Thank you. (1:22) How old are you?
Leah (1:23) I'm eight years old.
Scott Benner (1:24) Eight. (1:25) And you have type one diabetes?
Leah (1:27) Yes.
Scott Benner (1:28) For how long?
Leah (1:30) I've had it since 08/26/2024.
Scott Benner (1:35) Oh, wait. (1:36) Not even a whole year yet? (1:37) No. (1:38) Wow. (1:38) That's pretty new then.
Leah (1:40) How are you doing? (1:41) Good.
Scott Benner (1:42) Yeah? (1:43) You you're just okay? (1:44) It's no big deal? (1:45) Do you check your blood sugar or do
Leah (1:47) you Yeah. (1:47) I check my blood sugar by myself. (1:51) Sometimes I dose by myself Yeah. (1:53) When I'm home alone with my sister.
Scott Benner (1:56) Oh, wow. (1:56) That's awesome. (1:57) So do you remember anything about getting type one? (1:59) Do you remember about being diagnosed or what it was like?
Leah (2:02) I remember laying I remember waiting what felt like forever in in the emergency room waiting place. (2:13) And then
Scott Benner (2:15) I just get called in, and we just go into the small room and take some tests. (2:20) And then I have to go into this big room with this large bed, and they tell
Leah (2:25) me to just pop on the bed.
Scott Benner (2:26) Right.
Leah (2:27) And then they take a finger prick, and it hurt it and it hurt so much.
Scott Benner (2:33) Yeah.
Leah (2:34) And then it it was already past lunchtime, so I was pretty hungry. (2:40) And so I was just waiting there Yeah. (2:43) While watching TV on a big hospital bed. (2:49) And eventually they put an IV in.
Scott Benner (2:51) Yep.
Leah (2:53) But before they did that, they put on numbing cream and told me to wait there for thirty minutes.
Scott Benner (3:00) And then they They
Leah (3:00) kept me there for an hour.
Scott Benner (3:02) Did they how how many days did you spend at the hospital?
Leah (3:04) I didn't spend any days. (3:06) I spent hours.
Scott Benner (3:07) Wait. (3:07) So you went into the hospital, got diagnosed, and then you left the same day?
Leah (3:11) I left the same day except I was there for so long.
Scott Benner (3:15) Wow. (3:16) I know it is.
Leah (3:17) I was there for maybe four hours.
Scott Benner (3:18) Gotcha. (3:19) Wow. (3:19) That's pretty short for most people. (3:21) I know some people were in the hospital for five days after they were diagnosed. (3:23) Wow.
Scott Benner (3:24) Right? (3:24) They had to be they had to live there. (3:26) So when you left, what was your understanding of what your new situation was?
Leah (3:30) I had no clue what was happening. (3:33) My mom and my dad didn't tell me I had type one diabetes. (3:37) They just they just took me to my Gigi and Papa's house, and so and it's helpful because my papa's a doctor Mhmm. (3:48) And my DD used to be a nurse.
Scott Benner (3:50) Okay.
Leah (3:51) So
Scott Benner (3:51) Did they help explain it?
Leah (3:54) I didn't really get explained to it
Scott Benner (3:57) Yeah.
Leah (3:57) By the next day.
Scott Benner (3:59) Okay.
Leah (3:59) And so I just ate mostly just, like, carb free foods for dinner and breakfast. (4:08) And then we just drove to UVM. (4:12) Mhmm. (4:13) And they just kept me there for most of the day.
Scott Benner (4:19) And This is your biggest problem with diabetes, the time it takes,
Leah (4:22) Yep.
Scott Benner (4:23) Yeah. (4:23) I see this.
Leah (4:24) It just takes time.
Scott Benner (4:25) It takes time. (4:26) It does take time. (4:27) So what do they give you to manage with it first? (4:29) Is it like pens? (4:31) Do you get needles and vials?
Scott Benner (4:32) Do you remember how you got insulin in the beginning?
Leah (4:36) They didn't give me insulin at the hospital
Scott Benner (4:38) No.
Leah (4:38) The day when I got diagnosed, which why didn't they give me insulin
Scott Benner (4:43) I don't know.
Leah (4:44) If I needed it?
Scott Benner (4:44) I think they probably wanted you to get training before they gave you insulin maybe. (4:48) You think?
Leah (4:49) Yeah. (4:50) I think so. (4:52) But the but at the day of Nuvian, I learned I had to take shots. (4:58) I had to take my blood sugar, and they even gave me this little eel meal for breakfast to eat.
Scott Benner (5:03) Yeah. (5:03) So that you could bolus for it?
Leah (5:05) No. (5:06) I didn't have the pump.
Scott Benner (5:07) Oh, but did you
Leah (5:08) So I had been I
Scott Benner (5:10) I said bolus. (5:11) I should have said inject. (5:12) You had to inject for it. (5:13) Right?
Leah (5:14) Yes.
Scott Benner (5:14) Yeah. (5:14) Okay. (5:15) And that was your first time?
Leah (5:16) Mom and dad how to do it. (5:18) And, eventually, I got to go down there. (5:22) And and then I got I got to go down there with mom and dad, like, to the Bottom Floor. (5:29) And we went to we went to this little, like, shop, and I got this little Barbie diary. (5:37) I still have it in my room.
Scott Benner (5:39) Yeah.
Leah (5:40) And on one end on some of the first pages, I wrote down stuff, but I couldn't really understand it when I read it the next time.
Scott Benner (5:49) Come because you couldn't read your writing?
Leah (5:51) No. (5:51) I could read it. (5:52) Oh. (5:53) It was just like a lot of, like, nutrition words.
Scott Benner (5:55) New words.
Leah (5:55) One of the words I really understood when I read it again one time was carbs.
Scott Benner (6:01) Carbs. (6:02) Because you count your carbs all the time now. (6:04) Right?
Leah (6:04) Yep.
Scott Benner (6:04) Yeah. (6:05) And you take you said sometimes you bolus for yourself now? (6:07) Yeah. (6:08) But how did you get from injecting to bolusing? (6:10) What did you do?
Leah (6:11) Okay. (6:11) So first, I had so I spent a couple maybe a month or a couple weeks with injecting and finger pricking.
Scott Benner (6:23) Right.
Leah (6:24) And then I got told I didn't have to do the finger pricking anymore. (6:28) I could just get a Dexcom.
Scott Benner (6:30) So you have a Dexcom now, but you're still doing injections? (6:33) No. (6:34) No. (6:34) You moved to a pump?
Leah (6:36) I moved to the Tandem pump. (6:39) I go onto my phone, open up, and then I type in my passcode, open up the Mobi thing, and then there's this little, like, thing of, like, words down at the bottom. (6:51) And so the words are dashboard, which I'm usually at to see my blood sugar Mhmm. (6:58) And and and some stuff. (7:00) And there's then there's bolus, which I just press, put, and then there's two and these three boxes.
Leah (7:08) The top shows you the insulin. (7:11) The bottom right one shows you your blood sugar.
Scott Benner (7:16) K.
Leah (7:16) And then the bottom left one, you can just type it. (7:24) You just push it and then type in the carbs. (7:28) So say I'm eating Pringles and I want 15 chips.
Scott Benner (7:32) Real quick. (7:33) What kind of Pringles? (7:34) The sour cream? (7:34) Original. (7:35) Original?
Scott Benner (7:36) Red ones? (7:36) Okay.
Leah (7:37) Because I did this just yesterday. (7:39) Mhmm. (7:39) I I took the Pringles, looked at the nutrition facts. (7:42) It said 15 crisps, and then it said 16 carbs. (7:48) So I just went into my phone, put in 16 carbs, and it took showed me the amount of insulin I needed to get.
Leah (7:58) And then I just press next, confirm, and then you drop this little, like, droplet. (8:05) You push that little droplet, and then it uses face ID, and it just
Scott Benner (8:10) Makes your bolus. (8:11) Yeah. (8:11) It's awesome. (8:12) Is it easy?
Leah (8:14) Pretty easy.
Scott Benner (8:15) Do you like it differently or better or worse than injections?
Leah (8:18) I like it a lot better than injections.
Scott Benner (8:20) How come?
Leah (8:22) I can't really feel it.
Scott Benner (8:23) You don't feel it? (8:24) No. (8:25) That's awesome. (8:25) That's right. (8:26) I think you're gonna grow up to be a technical writer, by the way, because when you explain something, it is very thorough and I understand everything while you're talking.
Scott Benner (8:33) So thank you very much. (8:34) I appreciate that. (8:35) Do people find that they understand you when you're talking, do you think?
Leah (8:40) Pretty sure.
Scott Benner (8:41) Pretty sure?
Leah (8:41) But I know some I know a lot of non diabetics.
Scott Benner (8:46) Okay.
Leah (8:46) And they are all like, so how's your diabetes going? (8:50) Like, it's my pet. (8:52) And I'm like
Scott Benner (8:53) Wait. (8:53) They treat your diabetes like it's a pet?
Leah (8:55) Like, how's
Scott Benner (8:56) how's Fido?
Leah (8:57) They're like, how's your diabetes going? (8:59) And I'm like, it's going good.
Scott Benner (9:01) It's going good.
Leah (9:02) I'm just trying to hold back my anger.
Scott Benner (9:05) Why? (9:05) You don't like do
Leah (9:06) you not? (9:06) Doesn't understand at all.
Scott Benner (9:08) So you would like it if she understood it better? (9:09) Yeah. (9:10) Do you
Leah (9:10) I want people to understand it better.
Scott Benner (9:12) Yeah. (9:12) Do you explain it to them or do you find that they're not interested?
Leah (9:15) I just I just know that, people are, like, trying their best, so I don't say, hey. (9:24) You're wrong. (9:25) It's actually, how have you been since you've been die how have you been with your diabetes?
Scott Benner (9:34) Mhmm.
Leah (9:34) And I could just say, I've been pretty good handling my diabetes.
Scott Benner (9:42) Yeah. (9:42) You're doing well? (9:43) Do you know what your a one c is?
Leah (9:45) No. (9:45) I can't remember.
Scott Benner (9:46) No. (9:47) That's okay.
Leah (9:47) I don't pay attention to all that stuff.
Scott Benner (9:49) All the numbers.
Leah (9:50) Mom and dad do.
Scott Benner (9:51) They do that stuff? (9:52) Yeah.
Leah (9:52) What do you what
Scott Benner (9:53) do you do at the doctor's office when you have an appointment though? (9:55) Do just sit there and hang out?
Leah (9:57) I just sit there, and a lot of times I bring my sister. (10:00) She's the only entertainment I've got when I go there.
Scott Benner (10:03) How many brothers and sisters do you have?
Leah (10:05) I have one brother, Joey, who is six years old, and then I have an older sister, Juliana, who's 11 years old.
Scott Benner (10:15) Does anybody else have type one diabetes in your family?
Leah (10:19) Not type one.
Scott Benner (10:21) Okay.
Leah (10:21) There is someone in my family with type two, though.
Scott Benner (10:24) Okay. (10:25) And how about you you have friends at school, but do any of them have diabetes?
Leah (10:31) My principal and school nurse have diabetes. (10:35) Oh, wow. (10:36) Type two, though.
Scott Benner (10:36) Type two, not type one. (10:38) Gotcha. (10:38) So you are you the only have you ever met another person with type one? (10:42) I mean, you're gonna meet a lot of them here, but where where did you meet that person?
Leah (10:47) At dance class. (10:48) Dance class. (10:49) Yeah.
Scott Benner (10:49) So is that something you like doing, dancing?
Leah (10:51) I like dancing. (10:53) Dancing and theater are my hobbies.
Scott Benner (10:55) They're your hobbies. (10:55) You don't play sports. (10:56) You do dancing in theater?
Leah (10:57) I do do sports. (10:59) I play, like, soccer
Scott Benner (11:01) Mhmm.
Leah (11:02) And dance and theater. (11:06) Those are my three main hobbies.
Scott Benner (11:08) How do you manage your diabetes with soccer and dance? (11:13) Is there stuff you have to do that's special or
Leah (11:16) anything? (11:16) Parents are always there every time I go to soccer.
Scott Benner (11:23) Yeah.
Leah (11:23) But with dance, they just drop me off and say goodbye.
Scott Benner (11:26) Story out of car.
Leah (11:27) We'll call
Scott Benner (11:28) Did they
Leah (11:29) Heather we'll call either you or miss Heather if we need it.
Scott Benner (11:32) Yeah.
Leah (11:33) But I usually have my watch on me. (11:35) Mhmm. (11:35) So I can just be like like this.
Scott Benner (11:38) That's where you see your blood pressure.
Leah (11:39) Open up my watch, just go down, and then I go into sweet dreams. (11:46) Fetching my readings or things for And then looking 64 right now.
Scott Benner (11:50) That's a nice steady line you have there.
Leah (11:51) Yeah. (11:52) That's awesome.
Scott Benner (11:53) So you don't have to do any special settings to go dancing
Leah (11:55) or to I do. (11:57) They, the pump has exercise mode, which actually lowers my insulin that I get while I'm doing that.
Scott Benner (12:07) Yep.
Leah (12:07) And they and the people at UVM actually decided to make me a profile for exercise.
Scott Benner (12:14) Okay.
Leah (12:15) And we call it dance profile because whenever I'm exercising, it's usually dance.
Scott Benner (12:22) Yeah. (12:23) And your buncher tries to go down so they put in a different profile and it doesn't happen like that.
Leah (12:27) Well, it goes down, but
Scott Benner (12:30) Not the same way.
Leah (12:31) Not the same way. (12:32) What if I didn't have that stuff?
Scott Benner (12:33) If you get low, what's your favorite, food to make your blood sugar go back?
Leah (12:37) Sour Skittles.
Scott Benner (12:38) Sour Skittles?
Leah (12:40) Yeah. (12:40) Sour Skittles are delicious.
Scott Benner (12:42) How often do you have sour Skittles? (12:44) Is it a daily thing? (12:46) No. (12:46) No. (12:46) Not every day.
Leah (12:47) It's not daily. (12:47) Oh. (12:48) Don't get many loads.
Scott Benner (12:50) Mhmm.
Leah (12:51) But if I do, I usually have gummy clusters.
Scott Benner (12:55) Okay. (12:55) Nerds gummy clusters. (12:57) That's the squishy in the middle and then the Nerds stuck to the outside. (13:00) Yeah. (13:01) They're not bad.
Scott Benner (13:02) They're not bad at all, but sour Skittles. (13:05) What do you do when you're sleeping and you're low? (13:07) Like in the middle of the night when your mom or dad comes up?
Leah (13:09) My mom my mom probably either put some Nerds gummy clusters in my mouth Mhmm. (13:17) And doesn't wake me up.
Scott Benner (13:18) You chew them up in your sink?
Leah (13:19) Or she just wakes me up, and she's like, hey. (13:23) Can you take some she and she's like, hey. (13:26) And then she just keeps, like, giving me nerds, going to question, and I'm like, what's my blood sugar?
Scott Benner (13:32) You ask? (13:32) Do you ask? (13:32) You wanna know
Leah (13:33) what's I ask what's my blood sugar.
Scott Benner (13:35) Right.
Leah (13:36) And then they just tell me a a number that it's either not low, but drops, like, a lot of points Mhmm. (13:44) Or it's just low.
Scott Benner (13:47) Just low, and you have to take care of it.
Leah (13:48) Yeah.
Scott Benner (13:49) Yeah. (13:49) How does it how does it feel to know that your parents are helping you all the time? (13:55) Do you like
Leah (13:55) Feels great because then I don't then I don't have to do all the work.
Scott Benner (13:59) Yeah. (14:00) What's the part of the diabetes that you don't like the most?
Leah (14:02) Sometimes I I just I'm like, hey, mom. (14:06) Here's my phone. (14:07) Can you polish me, please?
Scott Benner (14:09) Oh, my daughter does that sometimes, but
Leah (14:10) Even even if my dad told me the carbs, not my mom, I'm like, can you bully me, please?
Scott Benner (14:17) Do you like it when somebody takes care of it?
Leah (14:19) Yeah. (14:19) I don't wanna I don't wanna bully myself.
Scott Benner (14:21) What do you think the biggest change in your life has been since you got diabetes? (14:25) Has anything changed?
Leah (14:27) A lot of things have changed. (14:29) Sometimes I have to sit out because I'm low. (14:32) Yeah. (14:34) And then sometimes eventually my dad's like, hey. (14:40) You have to sit down because you're low, and then he just gives me stuff.
Leah (14:46) And, also, kids say that they're, like, jealous of me because they're like, I wanna have diabetes.
Scott Benner (14:54) To get the Skittles?
Leah (14:56) Just for the candy.
Scott Benner (14:57) Just for the candy. (14:58) Yeah.
Leah (14:58) And I'm like, you don't wanna be, like, shoveling candy in your mouth.
Scott Benner (15:05) It's not fun. (15:06) Right?
Leah (15:06) Wait. (15:06) I could just tell him.
Scott Benner (15:07) You yeah.
Leah (15:08) You're not always gonna have to eat it. (15:10) Sometimes you're gonna have to take the stinky stuff, and it's really, really stinky.
Scott Benner (15:16) What is stinky? (15:17) Wait. (15:18) What's that?
Leah (15:18) The the insulin.
Scott Benner (15:20) Oh, really?
Leah (15:20) I think the insulin's stinky.
Scott Benner (15:22) You don't like the way it smells?
Leah (15:23) I don't like the
Scott Benner (15:24) way People say they think it smells like Band Aids. (15:26) Do you think that?
Leah (15:27) No. (15:27) That's not true.
Scott Benner (15:28) That's not what it tastes like smells like to you? (15:30) What's it smell like?
Leah (15:31) It smells like something that'd be in a scientific project.
Scott Benner (15:34) Yeah. (15:35) Like a hospital? (15:36) Does it smell like the hospital? (15:37) Yeah. (15:38) I've heard people say that too.
Leah (15:39) Well, the hospital more smells like alcohol pads.
Scott Benner (15:42) Yeah. (15:43) How did you decide to get a tandem pump? (15:45) Did you see a bunch of pumps and pick? (15:47) Did your mom tell I
Leah (15:48) didn't get to pick. (15:50) My mom and dad were just like, my no one told me I'd get a tandem. (15:55) I just found out the name and I'm like, okay. (15:57) I have this pump now.
Scott Benner (15:58) Yeah. (15:59) And you like it? (16:00) Yeah. (16:00) I like it. (16:01) Awesome.
Scott Benner (16:01) That's a good review.
Leah (16:03) I like it.
Scott Benner (16:04) Yeah. (16:04) You like it? (16:04) You like not giving yourself shots. (16:06) Right?
Leah (16:07) Oh, I hate giving myself shots.
Scott Benner (16:09) You didn't like that?
Leah (16:10) But sometimes even when my brother or sister are like, I don't wanna get my shots. (16:15) I don't wanna get my shots. (16:16) I'm like, I'll I'll get your shots for you.
Scott Benner (16:18) Yeah.
Leah (16:19) So that way they don't have to take the shots.
Scott Benner (16:21) What do
Leah (16:22) you I like
Scott Benner (16:23) Can you tell me one thing you really love about the pump?
Leah (16:27) I got a choice. (16:29) Push in or pop in.
Scott Benner (16:30) Pushing or pop in. (16:31) So you like the choice of how it goes in? (16:33) Yes. (16:34) Awesome. (16:34) That's right.
Leah (16:35) I like knowing that I get to decide what I want.
Scott Benner (16:39) Yeah. (16:39) I like that too. (16:40) I've been married a long time, so I haven't made a decision in a while, but I remember it and it is fun. (16:44) Do you have any heroes that have diabetes? (16:46) Anybody?
Leah (16:47) Who? (16:48) Stacy McGill.
Scott Benner (16:49) Stacy McGill? (16:50) Who is she?
Leah (16:50) From the babysitter's club.
Scott Benner (16:52) Oh, from the babysitter's club. (16:54) That's your that's your hero? (16:55) That's awesome. (16:55) How many times do think you've read that book?
Leah (16:58) A lot.
Scott Benner (16:59) Yeah. (17:00) Do you read it yourself? (17:01) Does your dad read it to you?
Leah (17:02) I don't like my dad reading to me. (17:04) Oh, tell me what super tired, I'm like, I'm about to fall asleep. (17:09) I like my dad reading to me if that happens.
Scott Benner (17:12) Do you ever do sleepovers or go to your friend's house? (17:14) And how do you handle your diabetes with that?
Leah (17:17) My mom usually calls me when I'm at a friend's house.
Scott Benner (17:20) Mhmm.
Leah (17:21) Except I haven't had my first sleepover.
Scott Benner (17:24) No? (17:25) No. (17:26) Are you so is that a thing you used to do that you don't do anymore or just just haven't had a chance?
Leah (17:30) I just haven't ever had a chance.
Scott Benner (17:33) Okay. (17:33) Would you like to do that?
Leah (17:36) Yeah.
Scott Benner (17:36) Who are you more like when it comes to
Leah (17:39) I feel like daddy.
Scott Benner (17:41) Really? (17:41) Interesting.
Leah (17:42) Yeah. (17:43) Because daddy's always in control.
Scott Benner (17:44) He's in control?
Leah (17:45) He's always telling you, like, what to do.
Scott Benner (17:51) Well
Leah (17:52) He's always like, you have to make your bed.
Scott Benner (17:54) Oh my gosh. (17:55) Make your bed? (17:57) Yeah. (17:57) Does he make you pick up your dirty clothes too? (18:00) Yeah.
Scott Benner (18:01) This is ridiculous. (18:02) You don't have time for that. (18:03) What what do you wanna be doing?
Leah (18:05) Watching TV.
Scott Benner (18:05) Leah, this was really nice of you to do with me. (18:07) Thank you very much. (18:08) I appreciate this. (18:09) Thank you. (18:10) Did you have a good time?
Leah (18:10) Yeah.
Scott Benner (18:11) Me too. (18:11) Awesome. (18:12) Good job. (18:13) Thank you. (18:14) The podcast you just enjoyed was sponsored by Tandem Diabetes Care.
Scott Benner (18:18) Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. (18:28) There are links in the show notes and links at juiceboxpodcast.com. (18:33) If you'd like to hear about diabetes management in easy to take in bits, check out the small sips. (18:39) That's the series on the juice box podcast that listeners are talking about like it's a cheat code. (18:44) These are perfect little bursts of clarity, one person said.
Scott Benner (18:47) I finally understood things I've heard a 100 times. (18:50) Short, simple, and somehow exactly what I needed. (18:53) People say small sips feels like someone pulling up a chair, sliding a cup across the table, and giving you one clean idea at a time. (19:02) Nothing overwhelming. (19:03) No fire hose of information.
Scott Benner (19:04) Just steady helpful nudges that actually stick. (19:07) People listen in their car, on walks, or rather actually bolus ing anytime that they need a quick shot of perspective. (19:14) And the reviews, they all say the same thing. (19:17) Small sips makes diabetes make sense. (19:20) Search for the Juice Box podcast, small sips, wherever you get audio.
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#1763 Defining Diabetes: Sliding Scale
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.
Scott and Jenny define "Sliding Scale" in this Defining Diabetes episode.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner (0:00) Friends, we're all back together for the next episode of the Juice Box podcast. (0:03) Welcome. (0:14) Managing diabetes is difficult, but trying to do it when you don't understand the lingo, that's almost impossible. (0:21) The defining diabetes series began in 2019, and today we're adding to it. (0:25) Go to juiceboxpodcast.com up in the menu, click on defining diabetes, and you'll see a complete list of all the terms that we've defined so far.
Scott Benner (0:35) Check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod five, Loop, Medtronic seven eighty g, Twist, Tandem Control IQ, and much more. (0:48) Each episode will dive into the setup, features, and real world usage tips that can transform your daily type one diabetes management. (0:55) We cut through the jargon, share personal experiences, and show you how these algorithms can simplify and streamline your care. (1:01) If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juice Box podcast. (1:07) Easiest way, juiceboxpodcast.com, and go up into the menu.
Scott Benner (1:11) Click on series, and it'll be right there. (1:14) While you're listening, please remember that nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. (1:22) Always consult a physician before making any changes to your health care plan or becoming bold with insulin. (1:29) Jenny, we're gonna define sliding scale, and I'm probably gonna ask you to go back into your way back machine back till you were how old? (1:37) When do you think is the last time you did that?
Jenny Smith (1:39) Oh my god. (1:43) Sliding scale use was trying to think. (1:48) I was in college when I stopped using sliding scale because rapid acting insulin Humalog
Scott Benner (1:57) Mhmm.
Jenny Smith (1:57) Came out. (1:59) So it would probably have to be trying to think I was working. (2:04) Funny of the memories that come in. (2:05) I was working at a plasma donation center when I read an article on my break about Humalog. (2:11) Really?
Jenny Smith (2:11) It's really interesting. (2:12) Yes. (2:13) And then I had a doctor's visit coming up very soon, and I went to him with the article. (2:18) You know, like, Internet and stuff was very Yeah. (2:21) Microscopic at that time.
Jenny Smith (2:22) So I brought him the article so I wasn't, like, the crazy person. (2:25) Mhmm. (2:25) You know? (2:26) And I was like, this
Scott Benner (2:27) Yeah.
Jenny Smith (2:27) This is what Jenny needs right now because RNL is not working very well for Jenny.
Scott Benner (2:33) So And please ignore that I stole this magazine from the plasma center. (2:37) Right.
Jenny Smith (2:38) You know, it's all okay. (2:41) Sliding scale probably until I was a sophomore in sophomore junior in college, I think
Scott Benner (2:51) Okay.
Jenny Smith (2:51) Is where I was using that. (2:53) And it's really it's the best that you could have had outside of using a pump eventually that was programmable in a way that could manage better. (3:04) Really, it's just you get a set amount of insulin for a meal. (3:08) Mhmm. (3:09) Breakfast is three units.
Jenny Smith (3:10) Lunch is five units. (3:11) Dinner is six units. (3:13) That's your dose for the food, and it's given to you with the expectation that your education included, your meal will consist of this much food. (3:22) Don't veer from this because your insulin is dosed according to what we told you you needed to eat. (3:28) Right.
Jenny Smith (3:29) And then if your blood sugar sliding scale corrective was also another math part to add to that. (3:36) If your blood sugar is here to here, add one unit. (3:39) If blood sugar is here to here, add two units or three units. (3:43) And so it was really it was management that was very wide.
Scott Benner (3:47) Yeah.
Jenny Smith (3:48) It was not the precise that we can have today.
Scott Benner (3:51) Do you remember back I know you're you're a particular eater. (3:55) I don't mean that, like, in a in a finicky way. (3:57) Just mean you're you do a good job with your with your intake. (4:00) So I imagine your sliding scale for your food worked pretty well. (4:03) Am I right?
Jenny Smith (4:03) It did. (4:04) Yeah. (4:04) And because my parents, especially my mom, was kind of the controller of the food until I went to college
Scott Benner (4:10) Yeah.
Jenny Smith (4:11) Everything was weighed and measured. (4:13) And, like, we had a bouncy scale that sat in the kitchen table Mhmm. (4:17) And it everything got measured. (4:18) Everything got weighed. (4:19) And it was thankful that I had really good educators too that made it it made it workable in my brain at that age too.
Jenny Smith (4:27) Like, this is just the way that it works. (4:29) And look. (4:30) With all the activity, I mean, I danced. (4:32) I was in volleyball. (4:34) I was a cheerleader.
Jenny Smith (4:35) I did a I biked with my dad. (4:37) I did a lot of things. (4:38) And so with those variables, I saw that if I just stuck with the schedule that I was given Mhmm. (4:45) It worked out pretty well. (4:46) Now what happened in between finger sticks?
Jenny Smith (4:48) I don't know. (4:49) Like, there was no CGM to say, gosh. (4:51) This dose really is the right one for you. (4:54) But
Scott Benner (4:55) Is it fair to say that most see, I don't think this is true because I talked to so many people who are on a sliding scale right now. (5:02) Like, it happens it happens to Canadians a lot depending on what province they live in. (5:07) And I am surprised more and more about Americans that I hear who are like, oh, no. (5:12) I'm on a sliding scale. (5:13) I'm like, how's that possible?
Scott Benner (5:14) It's like hearing somebody uses a fax machine. (5:16) You're like, what? (5:17) Right? (5:18) But but is that still pretty common?
Jenny Smith (5:20) It can be. (5:21) You know, we especially what I do with the clients that I am able to work with
Scott Benner (5:26) Yeah.
Jenny Smith (5:27) I see a lot of people who have access, really, I think is what this speaks to. (5:31) It's access to technology. (5:33) It's access to a clinical service that has encouraged you to to be able to be better because they're providing you the ability to have technology. (5:44) And many people don't have that. (5:47) So sliding scale is what it is.
Jenny Smith (5:49) It's you're told to have, you know, a dose of insulin. (5:53) And I what I've come to see too with some sliding scale people that I've worked with is they're not even given as much detail as I was given when I was using sliding scale. (6:04) Right? (6:04) It's eat breakfast, take three units of insulin. (6:08) There's not as much detailed your meal has to consist of this much food because we're expecting three units to cover your food.
Jenny Smith (6:17) Okay. (6:18) But if Right?
Scott Benner (6:19) If if you met somebody today who had access to insurance and they could get what they needed and they were on a sliding scale, would you tell them, I think you shouldn't be doing that? (6:29) Or would you say I I mean, is it different now that there are CGMs? (6:33) Like, are there people out there on sliding scale who are in a CGM? (6:36) Probably. (6:37) Right?
Jenny Smith (6:37) I would say that it defines sliding scale in a little bit of a different way Okay. (6:42) So those people are MDI still. (6:44) Right? (6:45) They may have a CGM, which gives them more access to information about what their doses that are set doses provide in control.
Scott Benner (6:57) Right.
Jenny Smith (6:58) I would even say that there are some people that might be using their pump as sliding scale instead of carb counting. (7:05) They may actually just be dialing in a manual dose of insulin, and then potentially, they might have a correction factor put into their pump so the pump then automatically gives correction. (7:18) That could be another way of navigating sliding scale with a little more precision.
Scott Benner (7:23) Mhmm.
Jenny Smith (7:23) But in general, sliding scale is usually multiple daily injections with a set amount of insulin and then a corrective factor that's a set dose based on blood sugar value.
Scott Benner (7:34) You think there's a lot of yo yoing that goes on for people who are managing like this?
Jenny Smith (7:38) Very likely, unless they're willing to get you know, I have a couple of friends who use MDI and do very well with it. (7:44) Mhmm. (7:45) But theirs is a precision they've learned how to look at their CGMs. (7:51) They've learned how their insulin works for them.
Scott Benner (7:54) Mhmm.
Jenny Smith (7:54) They've learned the timing of their dosing. (7:57) Even though they are using kind of a sliding scale, most of them have also found that their most common foods, they've just figured out the dose for it. (8:07) They don't necessarily have an insulin to carb ratio. (8:09) They've just been able to say, well, gosh, you know, my bowl of cottage cheese with pineapple always takes four units.
Scott Benner (8:16) Mhmm.
Jenny Smith (8:16) I'll take four units and my blood sugar's high. (8:18) I add a little bit more to this. (8:20) Right?
Scott Benner (8:21) Okay. (8:22) I've never had cottage cheese in my life.
Jenny Smith (8:23) You've never had cottage cheese?
Scott Benner (8:25) And as you're talking about it, it makes me feel I just wanna say that.
Jenny Smith (8:27) Well, that's okay. (8:28) It's not I yeah. (8:29) It's all good. (8:30) I don't know why it even came to mind. (8:32) I was just trying to think of, like
Scott Benner (8:33) It was nice. (8:34) I just was like, oh, I've never had that.
Jenny Smith (8:36) There you go. (8:36) I did make you eat a tomato, though.
Scott Benner (8:38) I did. (8:39) I did have a tomato. (8:40) Where was
Jenny Smith (8:40) I? (8:40) Tomato.
Scott Benner (8:41) I was a that was we were on vacation, and the tomato came out. (8:44) Was like, alright. (8:44) I'll eat it. (8:44) And I did, and I sent Jenny a picture of it. (8:46) I said, look.
Jenny Smith (8:46) I ate the tomato.
Scott Benner (8:48) I don't know if that episode's out yet or if people have context for that yet or not. (8:52) So sliding scale is like like, put it, like, real black and white for me. (8:56) Take all the the the nuts and bolts out of it. (8:59) Like, I'm at the doctor, they're just gonna say, hey. (9:01) Put in this much insulin at this time.
Scott Benner (9:04) Eat at this time. (9:05) Eat this much food. (9:06) If your blood sugar is one fifty to one ninety nine, I want you to do this much. (9:09) If it's 200 to two fifty, I want you to do a little this much. (9:12) That's it.
Scott Benner (9:13) That's a sliding scale.
Jenny Smith (9:14) There's basal insulin behind it. (9:15) So usually the basal insulin is also once a day Yeah. (9:19) At this point. (9:20) Right? (9:20) And then mealtimes are covered with a sliding scale, which tends to work a little bit better at this point because many people, not everybody, but most people are using rapid.
Jenny Smith (9:31) They're not using the older r insulin, which took longer
Scott Benner (9:34) I was gonna say, are there I don't wanna muddy the two, so let's just say we're done talking about that now. (9:39) But, like, are there places in the world where people are still using, like, regular and NPH?
Jenny Smith (9:43) Oh, absolutely.
Scott Benner (9:44) Really? (9:44) Yeah.
Jenny Smith (9:45) Absolutely. (9:46) Yes.
Scott Benner (9:47) Well and then they're on a, like, an old school sliding scale at
Jenny Smith (9:50) that point. (9:50) And then they're on very old school sliding scale, kind of similar to mine. (9:54) It was just very structured. (9:56) There was not there was not deviation from time frames or where snacks were gonna happen or anything unless there was exercise in the picture that you
Scott Benner (10:04) I remember Mike always he kinda paused for a minute when he was drawing up his insulin, and I did ask him one day, what are you thinking about? (10:10) He's like, I'm trying to figure out how active we're gonna be today. (10:13) Mhmm. (10:13) And that was kind of the end of it. (10:14) Like, it was in the morning, and he was just it was weird to watch him.
Scott Benner (10:17) He'd, like, pull on that, and he'd like, and, you know, meanwhile, it wasn't obviously, his outcome was terrible, so it wasn't working for him. (10:25) But that was, I think, the extent of his training. (10:28) I'm making air I'm making air quotes.
Jenny Smith (10:30) I mean, you know, the old school stuff again with even the the intermediate acting cloudy insulin, the n and r Mhmm. (10:37) Whatever. (10:38) Like, I had a very different snack in the afternoon depending on whether I was headed to a sport right after school or not. (10:48) So snack for sport was this type of intake so that I wouldn't drop because I was on the tail end of my intermediate acting insulin. (10:58) Mhmm.
Jenny Smith (10:59) And it would encourage me to have a low. (11:03) And I so
Scott Benner (11:04) And I did.
Jenny Smith (11:05) All those things that you kinda figure out.
Scott Benner (11:07) As you go. (11:08) Okay. (11:08) Thank you. (11:08) I appreciate it.
Jenny Smith (11:09) Sure.
Scott Benner (11:17) If this is your first time listening to the Juice Box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all, look for the Juice Box podcast, and follow or subscribe. (11:30) We put out new content every day that you'll enjoy. (11:33) Wanna learn more about your diabetes management? (11:36) Go to juiceboxpodcast.com up in the menu and look for bold beginnings, the diabetes pro tip series, and much more. (11:43) This podcast is full of collections and series of information that will help you to live better with insulin.
Scott Benner (11:50) Hey. (11:51) Thanks for listening all the way to the end. (11:52) I really appreciate your loyalty and listenership. (11:55) Thank you so much for listening. (11:57) I'll be back very soon with another episode of the Juice Box podcast.
Scott Benner (12:02) If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. (12:08) Listen. (12:09) Truth be told, I'm, like, 20% smarter when Rob edits me. (12:13) He takes out all the, like, gaps of time and when I go, and stuff like that. (12:18) And it just I don't know, man.
Scott Benner (12:19) Like, I listen back, and I'm like, why do I sound smarter? (12:22) And then I remember because I did one smart thing. (12:25) I hired Rob at wrongwayrecording.com.
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!
#1762 Lovely Rita
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.
Rita, a 41-year-old mother from Lisbon, Portugal, shares her journey of living with Type 1 diabetes for over 22 years and managing her six-year-old daughter’s diagnosis.
+ 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 (0:0) Here we are back together again, friends, for another episode of the Juice Box podcast.
Rita (0:14) Hi. (0:15) I'm Rita. (0:16) I've been a type one for twenty two years, and I have a type one daughter too.
Scott Benner (0:22) If this is your first time listening to the Juice Box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. (0:31) Look for the Juice Box podcast and follow or subscribe. (0:34) We put out new content every day that you'll enjoy. (0:38) Wanna learn more about your diabetes management? (0:40) Go to juiceboxpodcast.com up in the menu and look for bold beginnings, the diabetes pro tip series, and much more.
Scott Benner (0:47) This podcast is full of collections and series of information that will help you to live better with insulin. (0:55) If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. (1:01) Juice Box Podcast, type one diabetes. (1:04) But everybody is welcome. (1:05) Type one, type two, gestational, loved ones, it doesn't matter to me.
Scott Benner (1:10) If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. (1:19) Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. (1:24) Always consult a physician before making any changes to your health care plan. (1:31) A huge thanks to my longest sponsor, Omnipod. (1:34) Check out the Omnipod five now with my link, omnipod.com/juicebox.
Scott Benner (1:40) You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. (1:47) Go check it out. (1:48) Omnipod.com/juicebox. (1:51) Terms and conditions apply. (1:52) Full terms and conditions can be found at omnipod.com/juicebox.
Scott Benner (1:57) Today's episode is also sponsored by US Med. (2:01) Usmed.com/juicebox or call (888) 721-1514. (2:08) You can get your diabetes testing supplies the same way we do from US Med.
Rita (2:13) Hi. (2:14) I'm Rita. (2:15) I've been a type one for twenty two years, and I have a type one daughter too.
Scott Benner (2:20) Rita, how many children do you have in total? (2:23) One. (2:24) One child. (2:25) How old?
Rita (2:26) She's now six years old.
Scott Benner (2:28) Oh my gosh. (2:29) How old are you?
Rita (2:30) I am 41. (2:33) Yeah. (2:33) 41.
Scott Benner (2:34) So I'm sure. (2:35) Oh, is
Rita (2:35) it Yeah.
Scott Benner (2:36) Is it almost your birthday?
Rita (2:37) Be 42 kind of, well, soon ish, but, I'm I'm still 41. (2:42) Yes.
Scott Benner (2:42) It's very telling when a person reaches an age where they're like, you know, I think I'm almost in I don't remember a birthday, but it feels like it's coming close. (2:52) 40 oh, really? (2:54) Did you have a oh, I have a lot to ask you about. (2:57) Let's start slow. (2:58) How old were you when you were diagnosed?
Rita (3:00) I was 18 a few months before I was I turned 19, but I was still 18.
Scott Benner (3:05) And I hear your accent. (3:06) You're from Long Island, New York. (3:07) Is that correct?
Rita (3:08) No. (3:10) I'm from Portugal in Europe on the other side.
Scott Benner (3:13) Very nice. (3:13) Yeah.
Rita (3:14) I had an English a Canadian English teacher for many years, so maybe that's why.
Scott Benner (3:19) I was teasing you. (3:20) You know? (3:20) I I yeah. (3:21) I knew you. (3:21) I won't I
Rita (3:23) You know, I'm not native speaker. (3:24) Yes.
Scott Benner (3:25) Long Island's in my head because someone from a a pretty big hospital out there reached out the other day and asked me if I'd come out and give a talk. (3:32) And I thought, oh, I don't wanna drive over that bridge, but okay. (3:36) So I think I might nevertheless, you're 18 when you were diagnosed. (3:40) Are you from a big family or no?
Rita (3:44) No. (3:45) Like, I would say a small family. (3:47) I was also an only child.
Scott Benner (3:49) Mhmm.
Rita (3:49) Couple of a few cousins, but not a big family.
Scott Benner (3:53) Okay. (3:53) Okay. (3:54) Anybody else in the family have type one diabetes or other autoimmune issues?
Rita (3:59) No. (4:00) No type one and no no other, autoimmune.
Scott Benner (4:04) How about you?
Rita (4:04) Father had type two
Scott Benner (4:06) Mhmm.
Rita (4:06) But that he was diagnosed later, like, in his fifties, but no other so no no autoimmune and no type one at all.
Scott Benner (4:14) Wonder if I made this podcast twenty years from now and I said to somebody, you know, that same question when they got to their father. (4:20) Instead of saying my father had type two, they'll say, my father was on a GLP.
Rita (4:25) Yeah. (4:26) Yeah. (4:26) Interesting. (4:27) But then you'll you'll also get some probably type ones on GLPs too, and maybe the difference won't be, I don't know, so relevant anymore of type one or type two. (4:36) I don't know.
Scott Benner (4:37) Yeah. (4:37) Maybe. (4:38) Yeah. (4:38) Actually, that that reminds me, in case she ever hears this episode, Arden, I'm really proud of you. (4:43) I saw that you gave yourself your shot last night by yourself.
Scott Benner (4:46) That was really cool. (4:47) There was something in my garbage can this morning, and I was like, oh, look at Arden fighting through her her needle phobia. (4:53) Really cool. (4:54) Let's see, Rita. (4:56) How about you?
Scott Benner (4:56) Do you have any other autoimmune stuff?
Rita (4:59) No. (4:59) No. (5:00) Just the type one. (5:01) No. (5:02) Well, not yet at least, but, no.
Rita (5:04) I don't.
Scott Benner (5:05) Never say never. (5:06) That boy that you made a baby with, does he have any on his side of the family? (5:09) Any autoimmune at all?
Rita (5:11) No. (5:11) No. (5:11) Not that we know of, at least. (5:13) No autoimmune and, no type one specifically also.
Scott Benner (5:17) Rita, you have a a super a super ability to make babies with type one diabetes. (5:21) You made one baby. (5:21) You got diabetes.
Rita (5:22) Yeah. (5:22) Look at you. (5:23) I guess she got it from me. (5:24) Right? (5:25) So
Scott Benner (5:25) Oh, do you think of it that way?
Rita (5:27) No. (5:27) I don't. (5:28) No. (5:28) No. (5:28) No.
Rita (5:28) I don't. (5:29) But, yeah, I mean, she had a higher likelihood to to get it because one of the parents is type one, but I didn't consider it actually before like, when thinking about having a baby or so. (5:39) So that that was not part of the decision making process, let's say, whether the the kid would get type one or not. (5:45) I always, I guess, assume the likelihood was very, very low.
Scott Benner (5:49) Right.
Rita (5:50) And I just got, I guess, the, you know, the short straw.
Scott Benner (5:54) You drew the straw. (5:55) Yeah. (5:55) You, born and raised in Portugal?
Rita (5:58) Yes.
Scott Benner (5:58) Okay. (5:59) What was it like growing up with diabetes? (6:01) Was it different, like, being an adult a young adult with type one, there than you hear people on the podcast talking about it in other places?
Rita (6:09) So I was diagnosed, you know, like, twenty two years ago. (6:11) So that was things were so different from today. (6:14) I was at university.
Scott Benner (6:15) Mhmm.
Rita (6:16) I had started maybe four, five months before. (6:20) I was not admitted to the hospital, so I was I remember when I got the blood so I felt really tired. (6:27) And at some point, I understood that this is not normal. (6:31) Like, I couldn't go up a flight of stairs without, you know, feeling like I had run a marathon or something. (6:36) Mhmm.
Rita (6:37) So at first, it was kind of progressive. (6:39) You don't feel it coming. (6:41) But then, yeah, then it goes really quickly, the symptoms. (6:44) I lost, like well, a lot of weight. (6:46) I lost maybe five kilos in a week or something.
Scott Benner (6:49) Mhmm.
Rita (6:49) Oh, sorry. (6:49) Yeah. (6:50) You don't do kilograms. (6:51) I don't know how much that is in pounds, actually.
Scott Benner (6:53) Well, you're asking the wrong guy because I was asleep during that class, and we only did it here in America for, like, a year and a half then everybody gave up.
Rita (7:00) I don't think here we learn pounds. (7:02) It's 11 pounds. (7:03) I was just hoping that so I I lost kind of 11 pounds in about a week, a week and a half, and and that was right before diagnosis. (7:11) And so I I had, I guess, a very typical diagnosis in the sense of the symptoms I had. (7:17) So very thirsty, very tired.
Rita (7:19) I I was not very hungry like some people are. (7:23) And then my blood sugar fasting, it was in the three hundreds. (7:28) I obviously had ketones, but I was not in DKA, and I was not admitted to the hospital. (7:34) So I at the time so I I was studying in the capital of Portugal, and my hometown is, like, an hour away. (7:42) So I stayed, home for a week, clear out the ketones, and then I went back to university.
Scott Benner (7:48) Is Lisbon the capital?
Rita (7:50) Is Lisbon is the capital.
Scott Benner (7:51) I I didn't mean to interrupt you. (7:53) I just was so happy that I knew. (7:54) I wanted to say do.
Rita (7:56) You do. (7:56) Great. (7:57) And yeah. (7:59) So that was it. (8:00) And then I started on, well, NPH, I guess, at the time for a little bit.
Rita (8:05) I used so I was on two shots a day, you know, like, the exchange kind of thing or slide not even a sliding scale because I so I had to eat at certain determined times, more or less, you know, a certain amount of food. (8:18) Yeah.
Scott Benner (8:19) That's the way Jenny talks about it when she was a kid. (8:21) Right? (8:21) Yeah. (8:22) What what year was this?
Rita (8:24) So this was 2003.
Scott Benner (8:27) It's interesting.
Rita (8:28) 2003.
Scott Benner (8:28) You know why that's interesting is because I was just writing something last night, I had to look at a lot of dates. (8:35) And it's funny because I characterized the late eighties in America as a time where people were just realizing maybe there was a better way than Miles hour and regular. (8:45) But some twenty years later, that was still how they started you off?
Rita (8:50) Yeah. (8:50) But I think they wanted to so what I understood from the doctor at the time so the well, endo, but he was, like, from internal medicine
Scott Benner (8:58) Mhmm.
Rita (8:58) The his specialty. (9:00) Because here, you can have, like, both specialties treating type one. (9:04) So so he they wanted to start me off on insulin slowly so I wouldn't go down very quickly. (9:11) That's what I understood. (9:12) But I so then I was on two shots a day.
Rita (9:15) And then maybe a month after or something, it switched me to something called Mixtar. (9:21) So it was like a mix of slow acting and fast acting Mhmm. (9:26) That you would also take twice a day, I believe. (9:29) So morning and evening, then the honeymoon kicked in, and I was actually off insulin first only in the evening for, like, a month. (9:39) And then a month after, I was totally off insulin for another month or a month and a half.
Scott Benner (9:45) Do you recall that time? (9:46) Can I ask you, did you was that confusing, or was it expected?
Rita (9:50) I wasn't too happy about the honeymoon period. (9:54) I guess not not when I was off in well, maybe. (9:58) Because then I for me, for example, like, giving shots, it was very difficult. (10:02) I, like, I hated needles. (10:04) I still hate needles, but I I kind of learned then how to deal with that, I guess, but with the small needles, I guess, at least.
Rita (10:12) So for me to have to do it, like, you know, for a month and a half or two months and then having to stop completely, which had it's a good part, but then going back to it again. (10:23) So you don't create kind of that routine
Scott Benner (10:26) Mhmm.
Rita (10:26) In in care. (10:28) I didn't mind pricking my fingers, so that was okay because I didn't see the needle. (10:32) So for me, it was like seeing the needle. (10:34) But then on top of that, later when I resumed insulin, so those couple of months later, I would get lows, like, really low, and they would they would take time to to go to come back up, especially then when I started on Humalog, like, later way later. (10:54) And so that wasn't that wasn't good because then I was having, you know, like, sometimes two, three lows a day.
Rita (11:01) And, you know, if I'm sure you've heard this so many times. (11:04) Like, when you're when you're diagnosed, it's like and the doctors explain things to you. (11:08) It's like, oh, hypoglycemia is like this big monster. (11:12) You don't want to go low. (11:13) And then you go low the first time or first couple of times, and I I I told my doctor, I used to speak with him, like, every week, at least on the phone for the first few months.
Rita (11:22) And I said, well, I had a low. (11:24) Like, I felt this. (11:25) I had sugar. (11:25) And he said, yeah. (11:26) Okay.
Rita (11:26) That's normal. (11:27) I was like, really? (11:29) Like, you're really like, you tell people that, you know, it's like, Lowe's, these bad things, avoid them almost at all costs. (11:37) And then it happens, and they go, yeah. (11:39) Sure.
Rita (11:40) That's normal.
Scott Benner (11:41) Right.
Rita (11:41) That part wasn't so nice, so the very the variation. (11:44) What was nice is that I was like, I remember pricking my finger, say, for example, before lunch. (11:53) I could be, like, 01:60 or one eighty, and then I would eat, break it again two hours after, and I was 80. (12:00) So kind of that kind of stability, that easiness with the management
Scott Benner (12:06) Mhmm.
Rita (12:07) Meaning having good numbers, even off insulin, that part is good. (12:11) Yeah. (12:12) But then the resuming insulin parts, I was not very happy with that.
Scott Benner (12:17) Right.
Rita (12:17) And maybe looking back, I I guess I should have taken more advantage, let's say, of my honeymoon period.
Scott Benner (12:25) What do you think you should have done? (12:26) You gone on a major vacation?
Rita (12:28) No. (12:29) But, like, you know, allowing myself to eat things that I that I didn't. (12:34) So I remember a diagnosis. (12:37) Like, a nurse, she told me, yeah. (12:39) Okay.
Rita (12:40) You can eat sweets, like, when you want, but just be mindful that if you eat something sweet, because I was on these two shots a day, right, your glycemia may be higher for, like, a few days after that. (12:53) Okay. (12:53) And I thought, well, like, you know, a few days of higher glucose and just for something sweet, maybe the trade off is not enough for me. (13:05) You see? (13:05) So I guess during that time, I kinda stopped myself from, you know, being more flexible with eating some things, And maybe I didn't need to have done that, in hindsight.
Scott Benner (13:18) How was the transition of care to your next step? (13:22) Like, was the next step after the the mix? (13:25) Was it
Rita (13:26) Mhmm.
Scott Benner (13:26) You know, Humalog, that kind of thing? (13:29) Were you counting carbs then? (13:30) Was that an easy transition? (13:34) I have always disliked ordering diabetes supplies. (13:37) I'm guessing you have as well.
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Rita (15:42) So, yeah, so, actually, then after those, you know, two shots a day after being off of insulin, then, Lantus was being introduced here. (15:53) At the time, this doctor, he told me, look. (15:56) I have Lantus at the hospital. (15:59) So it was being introduced, but the the way they do things here is that they were still so the the pharmaceutical company and the government, they were still deciding on the price of insulin because we well, we don't pay for insulin here. (16:13) It's the the government that pays.
Rita (16:15) Mhmm. (16:16) And so they were trying to negotiate a price for the the pharmaceutical company to sell the insulin to the government. (16:23) And while they were doing this, and this still, I think, took many months, they were giving Lantus to doctors at some centers and hospitals. (16:33) This doctor, he told me, look. (16:35) I have here this new insulin.
Rita (16:37) I think it would be really good for you. (16:39) Do you wanna give it a try? (16:40) And I said yes. (16:41) And then I ended up being on Lantus only for one year, which is, I guess, also not the most typical case. (16:50) So transition to, let's say, a regular regimen of insulin, it it happened way later.
Rita (16:57) So maybe after a year, a year and a half. (17:00) And it wasn't all sudden. (17:02) So then I started on Humalog, but just for some meals and not others, you see. (17:07) And then once it started going up, my numbers, then I I gradually introduced Humalog for those until I was on the kind of the normal Yeah.
Scott Benner (17:17) Setting. (17:18) So hindsight, you had Lana probably. (17:20) Right?
Rita (17:21) Probably.
Scott Benner (17:22) Yeah. (17:22) Yeah. (17:22) I mean, it took it took a couple of years for you to need your your well, not a couple of years, but over a year, I guess.
Rita (17:28) Over a year. (17:29) Yeah. (17:29) For a full yes. (17:31) So I they did the the antibody labs, and I was, I guess, positive for if not all of them, for most of them.
Scott Benner (17:37) Right. (17:37) Right.
Rita (17:38) But you didn't hear about Flada when I was diagnosed.
Scott Benner (17:41) How long did you I mean, were you doing injections?
Rita (17:45) Yes.
Scott Benner (17:45) For how long did you do that?
Rita (17:48) For most for most of my, let's say, diabetic life, I've been on a pump now for maybe eight years or almost eight years. (17:57) But for all the rest, I I was on shots.
Scott Benner (18:00) What what kind of pumps are available for you?
Rita (18:02) So here we have Medtronic. (18:04) We have Tandem for last year, year and a half. (18:09) And my first pump was a combo, Aquachec combo
Scott Benner (18:13) Mhmm.
Rita (18:13) Which I think it was discontinued in The US way earlier than here.
Scott Benner (18:18) Oh.
Rita (18:18) But I was on a combo until a year ago. (18:21) And then a year ago, I was switched to tandem.
Scott Benner (18:25) Were they still making it all that time, or were they just making the supplies for it?
Rita (18:29) I don't know. (18:30) They were. (18:30) So I don't know. (18:32) I so I put the combo, or I was on the combo for almost seven years. (18:40) Yeah.
Rita (18:40) At that time so when I started, it was, like, just, you know, like, a normal pump here. (18:46) So you and at that time, you had EcoCheck, that EcoCheck pump, and Medtronic. (18:51) So Medtronic had always been here, I think. (18:53) And then Tandem only came maybe two years ago, but it's only now that it's being, like, really rolled out in higher Yeah.
Scott Benner (19:03) It takes them a while for to get the business on on its footing and and get stuff working.
Rita (19:08) Yeah. (19:08) And because of the way it it works here to get a pump also.
Scott Benner (19:12) How does it work?
Rita (19:14) It is through the government, let's say. (19:17) So you have to so the system actually changed a year ago, and now it's much easier. (19:22) So now a doctor can prescribe you a pump of your choosing. (19:28) Let's say that depends on the centers. (19:31) But then you need to wait for the training, and then you're put on a pump, let's say, to simplify.
Rita (19:37) But before that, it was kind of a centralized tender procedure. (19:41) Mhmm. (19:42) So every year, there would be a tender, then the different companies would apply. (19:47) But in practice, there were only two companies applying, so Medtronic and before Accu Chek. (19:53) And and then one of them would get the would win that tender, and then the tender would be for I don't know how many pumps, x pumps for the whole country.
Rita (20:05) And then they distribute it to the different centers. (20:08) Now the issue is you had way more people in on the waiting list to get pumps than pumps available. (20:14) Yeah. (20:15) So you've had you you have people actually that have been waiting for a pump for many, many years. (20:23) Things are now different for the last year and getting better.
Rita (20:28) So but but that that's it. (20:29) So you can, of course, buy a pump Mhmm. (20:33) Privately, but the costs are are huge. (20:37) So, basically, only a very, very reduced number of people are able to do that.
Scott Benner (20:41) Do you know what
Rita (20:42) the cash get it sorry?
Scott Benner (20:43) I'm sorry. (20:44) Do you know what the cash price would be for you if you had to buy it yourself?
Rita (20:47) Yes. (20:47) So the pump itself, I think they were about 3,000, €4,000, so maybe around 5,000 US dollars.
Scott Benner (20:56) Okay.
Rita (20:56) But then the issue is the, like, the the consumables. (21:01) Right? (21:01) The the cannulas, etcetera, the cartridges, etcetera. (21:06) And that would be maybe around €200 per month. (21:11) So if you multiply that for, you know, a year or two years or or three years, then it it's a lot of money, especially for, you know, the typical salaries here.
Scott Benner (21:21) Yeah. (21:21) I was gonna say, can you give people a little bit of perspective? (21:24) Like, that amount of money, 5,000 US dollars is Mhmm. (21:27) Is is it a I don't I'm sorry. (21:30) What percentage would it be of, like, an average salary there?
Rita (21:33) Oh, so I can tell you, like, me salary here in Portugal, it's not even $900. (21:41) So it's not even a thousand US dollars.
Scott Benner (21:44) A month or week?
Rita (21:45) A month. (21:46) A month.
Scott Benner (21:46) Sorry. (21:46) A month. (21:47) Okay. (21:47) So you're talking about five or six months worth of salary to buy an insulin pump.
Rita (21:51) Just to buy the pump. (21:53) And then for the for the cannulas, you know, the cartridges, etcetera, that would be, like, €200.
Scott Benner (22:01) I misspoke a second ago too. (22:03) But you said, like, €3,000, 500 5,000 American dollars. (22:06) But still, like, with three or four months of salary to buy the pump and, jeez Yeah. (22:12) A pretty big percentage of your monthly income to just keep the pump running.
Rita (22:16) Exactly. (22:17) So and that's why, you know, I I'm sure there are people that have bought pumps like that, but there it's they're very it's very low low number. (22:27) So, like, 90 probably 99%, I don't know the exact numbers, of people that are in the, well, in the national system for and and there, you don't pay anything. (22:38) So neither for the pump nor for the I don't know the word in English, actually. (22:43) The so the stuff that you have.
Scott Benner (22:45) Sets. (22:46) The
Rita (22:46) Yes. (22:47) Yeah. (22:47) Yeah. (22:48) But do you have, like, a name for all of those things?
Scott Benner (22:50) Pump supplies?
Rita (22:52) Yeah. (22:52) The pump supply. (22:53) Yeah. (22:53) Exactly. (22:53) So for all the pump supplies.
Rita (22:55) Yeah.
Scott Benner (22:55) So I did I I looked here just because I think it might be interesting to people. (22:59) Roche stopped making Rita's pump the combo in 2017 in America, And they made it for five more years overseas in other places. (23:09) It it's pretty interesting. (23:10) Also, I wanna point out to people that I've been trying out Google Gemini as an AI recently, and I hadn't been on ChatGPT in a while. (23:17) I opened up ChatGPT to ask it that question, and it was, like, effusively said good morning to me.
Scott Benner (23:23) I think it knows I'm cheating on it. (23:26) It was like, hi, Scott. (23:27) Welcome back. (23:28) And I was like, uh-oh. (23:29) What does it know?
Rita (23:31) It knows more than you think for sure.
Scott Benner (23:33) I mean, maybe. (23:34) I I is it gonna turn to me one day and go, I know you've been touching your keys with Gemini? (23:38) So then it made it made made me open it up in Gemini. (23:41) They are different. (23:42) Like, Chad GPT is good at inferring what you mean in conversationally, and Gemini is a little more specific, which I don't know one's better or the other.
Scott Benner (23:50) I'm just anyway, just bringing that up. (23:52) Okay.
Rita (23:52) I heard recently that Gemini three or some latest version is very good. (23:57) I haven't used it.
Scott Benner (23:58) I've I've coded. (24:00) I mean, vibe coded. (24:01) So, like, you know, not not really coded, but a couple of things that I'm I'm hoping to use on my website next year for searching. (24:07) I did it in, an hour and a half on Gemini. (24:09) I sat down with it to learn how to use it over the weekend and just kept talking to it about something.
Scott Benner (24:16) And I got it to the point where I had a, an instruction block. (24:21) And if you dropped in the instruction block and then just a link to a recipe, I had fine tuned the instruction block well enough that it would break the recipe down and then tell you how to bolus for it and consider fat and protein.
Rita (24:34) Oh, that's great.
Scott Benner (24:35) Just like that. (24:36) I don't know if I can make that available ever, but maybe I will one day. (24:39) I guess I just say it's for education purposes and let you guys look at it. (24:43) Because it really is just specific instructions to the model about how to handle the information. (24:51) And I didn't want you to have to drop in the even the recipe.
Scott Benner (24:54) I'm like, go to this web page. (24:55) Find the recipe. (24:56) See how it's cooked. (24:57) Like, keep in mind like, I gave it a whole bunch of anyway, it's really it it took me, like, four hours to figure it out. (25:04) It's pretty cool.
Rita (25:05) That's that is sounds pretty amazing.
Scott Benner (25:08) Listen. (25:08) If it doesn't kill us, it's gonna be awesome, Rita.
Rita (25:11) Exact
Scott Benner (25:11) exactly. (25:13) Which is exactly what I should have been thinking the day I got married.
Rita (25:17) Maybe it's gonna be awesome for a while, then it will kill us in the end. (25:20) But
Scott Benner (25:21) Like the marriage. (25:22) I get what you're saying. (25:23) Exactly. (25:23) Hey.
Rita (25:24) Let's see.
Scott Benner (25:25) We're just like, exactly. (25:25) I'm married. (25:26) I know what you're talking about. (25:27) So you live, what you would consider, like I mean, I guess it was tough, right, because you did have the needle phobia. (25:35) But did you get pens at some point?
Rita (25:38) Well, I I started with pens.
Scott Benner (25:40) You started right away with pens. (25:41) Okay. (25:41) Good.
Rita (25:42) Yes. (25:42) Only when I used Lantus from the hospital. (25:45) So there were no pens yet because it was not readily available at the pharmacy. (25:49) Then there were, like, then I used, syringes.
Scott Benner (25:52) Mhmm.
Rita (25:52) Yeah. (25:53) Pens are the standard here.
Scott Benner (25:55) Okay. (25:55) So pens, MDI for a long time. (25:57) You got a pump. (25:58) Did you enjoy a pump over the pens?
Rita (26:01) Oh, yes. (26:01) Yeah. (26:02) Yes. (26:02) Yes. (26:02) Tell me why.
Rita (26:03) I really wanted to get a pump.
Scott Benner (26:05) Tell me what it did for you.
Rita (26:07) Like, oh, like, being able to do more things. (26:10) So and before yeah. (26:12) I think what really changed things, and I guess many of your guests have said that it was the the sensors. (26:17) So I started on the sensor before the pump, and that that was a total game changer. (26:24) Yeah.
Rita (26:25) So there was with I started with Libre. (26:27) That was the sensor that was available here first.
Scott Benner (26:31) Mhmm.
Rita (26:32) And it was, yeah, amazing. (26:34) And then I actually had bad day about kind of dermatitis allergic reaction to to the the adhesive some months after I started, so I really had to stop using it. (26:47) And then a few months after, I I got a Dexcom. (26:51) Right. (26:51) And then I started using Dexcom after that.
Rita (26:54) But the sensor, that was, like, amazing. (26:57) And for the pump, it was just being able to get more more control, but in the sense of not better numbers because I I had good numbers than on with pens. (27:09) But being able to tweak things as you as you want to be more flexible in the in in what you do. (27:17) Yeah. (27:17) So that was, like, the the upside of the pump for me.
Scott Benner (27:22) I think maybe it's possible that people who were diagnosed in a more modern time and have, you know, always had a sensor Mhmm. (27:29) Might not have full context for what it would feel like to see the variability and they'll almost, you know you hear people talk all the time about, you know, the unknown nature of what's happening to them. (27:41) And, you know, when you're just testing a couple of times a day or, you know, even, you know, further back when you weren't even lucky enough to test, you know, at home that much, When when that's the situation, I think the feeling of out of control and unknowable must be overwhelming. (28:00) Right? (28:00) And then, you know, you're just you're fighting constantly.
Scott Benner (28:03) You know something's wrong, but you have no idea how to pinpoint what it is. (28:07) And even if you could pinpoint it, how would you know how to adjust it? (28:09) And now today, you see your CGM, and you see your blood sugar twenty four seven in real time, just about, you know, just about an actual real time. (28:18) And now you can make little little, you know, fine tunes and and tweaks the things. (28:23) I think I'm very sensitive to that today because yesterday, Dexcom announced they're not gonna make the g six anymore.
Scott Benner (28:31) Mhmm. (28:31) And they're know, it's being pulled. (28:33) And most people are like, you know, hey. (28:34) I use a g seven. (28:35) It's fine.
Scott Benner (28:36) Some people use a g seven and have trouble with it. (28:37) But while I'm watching these conversations happen online, I got upset. (28:42) And and I I I think I should try to be clear because listen. (28:46) You might hear this and say, well, yeah, Dexcom buys ads on Scott's podcast. (28:50) So listen to him now.
Scott Benner (28:51) Be positive about it. (28:52) But let me be first of all, they all buy ads on the podcast. (28:55) So, you know, trust me if I lost one or the other, I'd be okay. (28:59) But it's not why. (29:00) I and really, it's my perspective.
Scott Benner (29:02) And my and as I wrote about it last night, I'd like to share with you, Rita, like, the my perspective is this, that in the late eighties, my best friend gets diagnosed with type one diabetes. (29:13) He's got Miles per hour and regular, an old doctor who never changes how he manages his blood sugars. (29:21) I don't think even tries to start counting carbs until he's already in kidney failure. (29:28) You know? (29:28) And he lived his whole life getting up in the morning, you know, saying, I don't know.
Scott Benner (29:34) I guess I'm gonna be this active. (29:35) I'll draw up this much, shoot it in, do it again. (29:39) You know? (29:40) He'd be dizzy before dinner or after dinner. (29:44) His mood would be variable.
Scott Benner (29:46) You know, I spent my whole life thinking Mike was, you know, he's a wonderful person, but sometimes he'd get angry out of nowhere. (29:52) Like, you know what I mean? (29:53) No one really understood that. (29:55) Sometimes you didn't want him driving at night because he might swerve off the road a little bit. (29:59) We all looked at him like, oh, Mike's quirky.
Scott Benner (30:01) Like, Mike wasn't quirky. (30:02) Mike's blood sugar was all over the place, and no one knew anything about it. (30:05) Right? (30:06) Yeah. (30:06) You know, he's talking with his wife one night about what to have for dinner, and he stands up and says, I'll make it, and stands up, falls over, and his heart fails.
Scott Benner (30:14) And he's gone. (30:15) You know? (30:16) He'd be he's just Mike's just not here anymore. (30:18) And I'm watching people online talk about, you know, you're gonna move the g seven to fifteen days. (30:24) Mine doesn't even make it ten days.
Scott Benner (30:25) And all I could think was, boy, it would have been great to give Mike a sensor that didn't always last ten days. (30:31) It's all I could think. (30:32) You know? (30:32) Like and I know that doesn't address their issue, and I'm not saying that companies you know, every one of them shouldn't be striving to do their absolute best. (30:42) And I don't know.
Scott Benner (30:43) I just don't I mean, this is progress, and you don't want it to not happen. (30:48) So that's how I feel about it. (30:50) Now, also, I'd like to say I feel super lucky. (30:52) G seven works great for Arden. (30:55) She frequently wears it ten days plus the twelve hour grace period at the end with no issue.
Scott Benner (31:02) I think she had one failed the other day on, like, day seven. (31:08) And recently, she had that thing where, you know, you insert it and the wire comes popping. (31:12) I I I learned online they call it goosenecking, like the Yeah.
Rita (31:15) Yeah. (31:15) Mhmm.
Scott Benner (31:16) And you know what? (31:16) She put it on and she was like, ugh. (31:18) And she tore it off and she put another one on and boom. (31:21) And now she's okay again. (31:22) And all I'm telling you is you don't wanna go backwards.
Scott Benner (31:26) And you wanna have a tiny bit of perspective for how people used to live because these companies are they're private companies. (31:35) They have capital. (31:36) A Dex Com could wake up tomorrow and go, look. (31:38) We have a system in place. (31:39) We can make anything.
Scott Benner (31:40) We don't have to make these. (31:41) You know? (31:42) The shareholders could say, yeah. (31:43) Screw it. (31:44) That's enough.
Scott Benner (31:44) We got a lot of money. (31:45) Split it up, and let's get the hell out of here. (31:47) Like, I don't know. (31:47) There's a million things that could happen. (31:49) Just be grateful someone's out there doing it.
Rita (31:51) Yeah.
Scott Benner (31:51) If they've had problems, and they obviously have, and so has, you know, so is freestyle, you know, with the Libre, they'll work it out. (32:00) It's a company full of human beings. (32:01) They're trying to sell a sensor that measures your glucose. (32:04) They're gonna keep working on making it better. (32:06) They didn't see a problem and just go, oh, oh, well.
Scott Benner (32:09) But in the meantime, if you're looking for satiation on the issue, this is way, way better than how Rita grew up, how my friend grew up, how people in the past who've been on the podcast have grown up. (32:21) I mean, I know it's fun to get online and make funny videos about, like, oh, this is me panicking because the g six is gone and blah blah blah. (32:28) The g six is, like, the eighth iteration of a of a CGM. (32:32) There'll be more. (32:33) You know?
Rita (32:34) Yeah. (32:34) It's like people that are diagnosed, like, today, they just take a lot of things for granted that were not there, you know, like, ten, twenty years ago. (32:43) So Yeah. (32:44) Yeah. (32:44) Indeed, having perspective is is good.
Scott Benner (32:46) It's just import it's and so I'm telling this story because I wanna try to lend some perspective that I have to people who wouldn't have it. (32:53) Like, I'm not scolding you. (32:54) If you were diagnosed eight months ago and your CGMs aren't working correctly, I get where you're at, and I understand why you're mad. (33:01) But, you know, big picture. (33:04) Yeah.
Scott Benner (33:04) A person born now with type one diabetes has almost the exact same life expectancy as a person born without it.
Rita (33:12) Mhmm.
Scott Benner (33:13) And that was not the case ten years ago, twenty years ago, thirty years ago, forty years ago.
Rita (33:18) Yeah. (33:19) Exactly.
Scott Benner (33:19) And it's because of those damn sensors and these pumps, by the way.
Rita (33:22) Yeah. (33:24) I I I was going to say, I remember reading in the sugar surfing book from doctor Ponder that you've also had in the podcast that when he was, well, diagnosed and for many years after, there was no glucagon. (33:36) And I remember reading this. (33:37) Thought, wow. (33:38) There was no glucagon?
Rita (33:39) So there was a time that there was no glucagon available. (33:42) So if you had if you passed out, your only chance was, like, if you rub some sugar inside your cheek or, you know, you went to the hospital. (33:51) And, yeah, I I was also quite amazed to read that because it it gives you perspective. (33:57) You see? (33:57) So I was, yeah, diagnosed twenty years ago.
Rita (34:00) No sensors and no pumps at the time, at least here, but there was already glucagon. (34:05) So that was never an issue, right, for me. (34:09) And, as now, it's not an issue that for people that are diagnosed now that they have access to, sensors and pumps, at least in in many countries, which is probably not the case everywhere.
Scott Benner (34:21) Rita, liquid and inhaled insulin. (34:23) Multiple options for rescue glucagon. (34:26) GLP medications that are significantly reducing people's needs for insulin. (34:30) I know that some of you are like, that's only for type two. (34:33) Trust me if you think that.
Scott Benner (34:34) Go find some GLP medic, episodes. (34:36) It's it's gonna be happening. (34:38) What else? (34:39) I mean, algorithms that are making automated adjustments every few minutes, a vibrant DIY community that I mean, there's gotta be six different DIY opportunities for you to, like, download an algorithm. (34:51) You know, Dexcom is, I I know, nineteen, I think, years into making these things.
Scott Benner (34:57) Abbott's making the Libre. (34:59) Medtronic just, you know, introduced Mhmm. (35:02) Two new sensors or a new sensor, and they and they've got some interoperability with the Libre. (35:07) Senseonics is making that embeddable sensor, you know, the Eversense three six five that you might have heard about on the podcast. (35:15) You know, they're not the only company to try that.
Scott Benner (35:17) A number of companies tried to make that. (35:19) They couldn't figure it out. (35:20) Senseonics figured out how to embed the thing in your skin without your body rejecting it. (35:25) Like, that's somebody saying, we're gonna sink a bunch of money and man hours into trying to figure out a problem. (35:33) And a lot of them, it didn't work out for.
Scott Benner (35:36) A lot of pump companies have gone out of business over the years. (35:39) Like, I I just you do not wanna wake up one day and decide they you know, and and find out that these companies aren't interested in doing this anymore. (35:47) And I'm not saying don't complain about it because you don't want them to stop doing it. (35:51) I'm just saying that this is a really you have no idea if you're more newly diagnosed how wonderful all of this is and how what a positive impact it's having on your life. (36:00) So if the sensor fails, I mean, the way I handle it is I call it in and I say to myself, I'm glad this stuff exists.
Scott Benner (36:07) Now if I had some horrible experience, I I would maybe feel differently. (36:13) If I had if Arden had terrible allergies to the adhesive, I'd probably be like, well, this thing is no good for us. (36:18) Like and and it's hard to be grateful at that point. (36:21) I get it, but, I don't know. (36:23) Anyway
Rita (36:24) Yeah. (36:24) As you say, it's it's good to have some perspective, but people can complain. (36:29) They will always complain. (36:31) But, I mean, you can complain in a way that you're also acknowledging the, let's say, the greater good debt. (36:36) And these companies are are producing end of the life we have at least in kind of Western societies living with with type one today, which is very different probably from other world regions and from the past.
Scott Benner (36:49) Yeah. (36:49) Sure. (36:50) I think that what got me and I it's it's tough because I don't I'm not trying to it's it's buried in a comment somewhere. (36:56) I don't think anybody's gonna see it. (36:57) And it was the phrasing that the person used because the there was a there's a, you know, a post and people are like, you know, they're some of them are pearl clutching and some of them are trying to be funny and some of them are really worried.
Scott Benner (37:09) Oh my god. (37:09) G six is going away. (37:10) Mhmm. (37:11) And I just typed three little birds because I just you know, I was trying to reference the Bob Marley song And, because I think everything's gonna be alright. (37:20) And this person says, well, I hope the three little birds told you that this isn't true, that they plan to fix what's wrong with the g seven.
Scott Benner (37:27) And then it was this, before they shove it down our throats. (37:31) And I thought that's how you characterize this life saving device as it's being shoved down your throat? (37:38) Threw me off. (37:39) Like, it really did. (37:41) Like, I don't know.
Scott Benner (37:42) Maybe I grew up differently or maybe my experiences lend to a different perspective. (37:46) Thank you. (37:47) Every one of these companies who does this, thank you so much. (37:51) Again, you'll be like, oh, sure. (37:52) They buy an ad.
Scott Benner (37:53) I I could sell the ads to somebody. (37:54) This is a pretty popular podcast. (37:56) I could just sell the ads to somebody else. (37:57) I sell them to diabetes supply companies because I figured you guys might help you. (38:02) You know?
Scott Benner (38:02) You can get sheets. (38:03) You wanna get sheets? (38:04) Cozyearth.com. (38:05) Use the off grid juice box, save 40%. (38:08) There's other ads where I make I make ad income.
Scott Benner (38:11) And maybe they didn't mean it that way, and maybe they're just angry or scared, and it's all fine with me. (38:16) But that that was the the phraseology that came to this person's mind. (38:20) It both made me sad for them because they're obviously scared, and it made me sad in general because I thought, like, this stuff's I don't know. (38:29) Like, I don't see it as being I've had problems with diabetes technology before. (38:34) I've never thought you that somebody was shoving this garbage down my throat.
Scott Benner (38:39) You know?
Rita (38:39) And and people have choices. (38:41) Right? (38:42) So if you think, you know, one sensor is not good for you, you may go to another one if possible in your in your situation. (38:52) And so that's good to have a choice. (38:54) Right?
Rita (38:54) And for example, on Dexcom, I love dexcom, but for example, the I I did not know about the that that they would do they would discontinue the g six. (39:03) I use the g six Mhmm. (39:05) Because the g seven doesn't work for me.
Scott Benner (39:06) Yeah. (39:07) But
Rita (39:07) it works wonderfully for my daughter. (39:10) So my issue with the g seven is that it works well for the first roughly twenty four hours.
Scott Benner (39:16) Mhmm.
Rita (39:16) And then it just starts it just says low or lowish and does not respond to calibrations, and it just goes low, low, low.
Scott Benner (39:26) Okay.
Rita (39:26) And I have used, like, over, I don't know, 20 sensors, 20 g seven in different places on my body, and it's always like, out of those 20, maybe I got two that were reasonable. (39:39) So they did not make it to the end of the ten days, but maybe they lasted eight days with kind of reasonable with reasonable numbers.
Scott Benner (39:47) Mhmm.
Rita (39:47) But for all the others, it says low.
Scott Benner (39:49) So then you're a perfect person to ask about this then. (39:52) Then g six disappears. (39:54) What do you what do you what's your plan? (39:55) What are gonna do?
Rita (39:56) Yeah. (39:57) That's a good question. (39:58) I hope they I hope they do something with the g seven that it makes it work for me. (40:02) So I don't know why it doesn't work for me. (40:04) I haven't seen other people kind of talking about the same type of issue, but maybe there are.
Rita (40:12) And it would be nice to know there are others that this happens to. (40:16) But I, yeah, I I don't know. (40:17) I won't be happy, but I'll I'll live. (40:20) You know? (40:21) So I guess if if it would be for my daughter, I would be more upset to see
Scott Benner (40:25) if And I I don't think you shouldn't be. (40:27) And that's why, also, I'm not just saying don't worry about it. (40:30) Of course, about it. (40:31) My expectation here is is that if it is a thing that is impactable, it's going to be impacted. (40:37) The company's not just gonna look up and go, oh, well, we lost a chunk of people who can't use g seven.
Scott Benner (40:42) So I guess we'll stop innovating. (40:45) I guess we'll stop trying to figure it out. (40:47) Like, it's my expectation. (40:49) I have no idea about this, by the way. (40:50) I'm genuinely just making this up.
Scott Benner (40:52) But, like, I'm putting myself in their perspective, and I don't think that there's just a bunch of people in a room drinking a Diet Coke, watching television going like, oh, well. (41:02) You know, I I I imagine they're working on trying to figure out why it is that the g six works well for you when the g seven's not. (41:08) I listen. (41:09) I could be a million percent wrong. (41:10) We might go back to this one day and go, well, Scott, you were wrong about that.
Scott Benner (41:13) Wrote us off. (41:14) My expectation is is that we wake up sometime from now. (41:18) I find you, Rita, and you say to me, hey. (41:20) I don't know. (41:21) The g seven works now for me.
Scott Benner (41:23) And we'll Yeah. (41:23) You know what I mean?
Rita (41:24) That day comes soon. (41:25) Yeah.
Scott Benner (41:26) Yeah. (41:26) And I certainly do too because I also don't wanna make I I think I've been very clear about how important I think a CGM is for people. (41:32) But this is how progress happens. (41:34) Like, we're not a bunch isn't it funny, Rita, that AI comes out and it and people say, like, you know, I think we're gonna be able to use the AI to, like, fix problems more quickly. (41:44) People go, AI, scary.
Scott Benner (41:45) We don't want it. (41:46) And then you say, well, you know, there seems to be a problem between how this sensor work and that sensor works. (41:51) And somebody says, well, hurry up and fix it. (41:53) Like, which do you want exactly? (41:55) Like, do you wanna hurry up and fix it, or do you want no.
Scott Benner (41:58) No. (41:58) No. (41:58) Like, let's leave it on people, and we'll see. (42:00) Like Yeah. (42:01) You know what I mean?
Scott Benner (42:02) Like, I don't know how Dexcom's gonna work this out. (42:05) I am certainly not an engineer or a smart person. (42:08) But my expectation is is that they look at data, a lot of it. (42:13) They crunch that data, and that is how they figure out how to tune that algorithm so that it works better for you, how they figure out how to make those sensor wires so that they work better for more people. (42:23) It's how they figure out how to, you know, adjust adhesives so it sticks but doesn't make people break out.
Scott Benner (42:30) They're trying to find a balance in there. (42:32) And I don't imagine that they're sitting around not trying right now. (42:34) Like, that's my ex and I don't just I don't mean to single them out either.
Rita (42:38) Yeah. (42:38) Like, for the other companies too.
Scott Benner (42:40) Yeah. (42:40) Listen. (42:41) Tandem just rolled out, an update to their algorithm. (42:45) Right? (42:46) Gave people extended bolus in automation and some other things.
Scott Benner (42:50) Yeah. (42:50) Omnipod is in a trial right now trying to get the Omnipod five to, the next generation. (42:57) You know? (42:57) Libre is having some trouble. (42:59) You think they're all just gonna, like, throw their hands up and go away, or do you think they're all magic?
Scott Benner (43:03) They're just regular people at their jobs. (43:05) You know what I mean? (43:06) Like, they're trying to figure it out. (43:07) It takes time. (43:08) So sucks that it takes time.
Scott Benner (43:10) But
Rita (43:11) I mean, for me, that's it's kind of obvious. (43:13) They also they're a company. (43:15) Like, they well, Taxcom and the others, they're all companies, so they have to make decisions that are not going to please everybody. (43:21) But in the grand scheme of things, surely things would get better for most people that use those products even if that excludes some because for some reason, it doesn't work for them.
Scott Benner (43:34) Yes.
Rita (43:34) The g seven currently doesn't work for me. (43:37) It doesn't make Dexcom, like or some other company a bad company just because of that.
Scott Benner (43:43) You bring up the exact reason why I wouldn't wanna be in politics. (43:47) Like, because everyone singularly feels like the thing is working for them or failing them, and then you've gotta be a person who's looking at greater good, you know, the masses saying, listen. (43:58) I think we're covering as many of these people with this thing, whatever we're trying to help them with, as we possibly can. (44:05) What it must be like to be a listen. (44:07) Politicians are, you know listen.
Scott Benner (44:09) They could go about things differently. (44:11) I wonder what it would be like to be a politician to put something in action that you're trying to help, let's say, 10,000,000 people with. (44:18) And you get done at the end of the day and you say to yourself, oh my god, we figured it out. (44:23) We helped 8,000,000 of these people. (44:25) We're really not helping 1,000,000 on this side of the problem and 1,000,000 on that side of the problem, but we found a way to help 8,000,000 people and then spend the next day getting bitched at by the 2,000,000 that aren't helping.
Scott Benner (44:36) Like, you must be like, ugh. (44:37) Yeah. (44:38) Like, what am I gonna do? (44:39) Right? (44:40) And it's the same thing of and by the way, again, not that those 2,000,000 people in that example don't have a complaint, they obviously do.
Scott Benner (44:47) But but you gotta put yourself in other people's shoes sometimes. (44:50) And and you're an adult. (44:52) You're doing it. (44:52) You're saying, look. (44:53) The g seven doesn't work for me.
Scott Benner (44:54) This is gonna be problematic. (44:56) I'm gonna have to figure something else out. (44:58) This is scary. (45:00) And but I don't know. (45:03) In a I'm talking to you, Rita.
Scott Benner (45:04) I don't think you would ever say to me, well, now they're jamming this down my throat.
Rita (45:09) No. (45:09) No. (45:09) No. (45:10) Well but, I don't know why well, I didn't read, you know, that thread, or I don't know why they would say that. (45:17) I I don't know.
Rita (45:17) Do people feel that companies are pushing these these products onto, you know, type one patients because there is choice. (45:26) Like, maybe if you want to go with pump x and that only works with sensor y, then, okay, there's not much choice there. (45:33) But in the grand scheme of things, there are choices. (45:36) There are different products. (45:37) There's not one pump or one sensor only, right, that it either works for you or it doesn't.
Rita (45:42) And, of course, that, like, people are upset, myself included, if something I would like to work for me doesn't work for me for whatever reason, even worse if I don't understand the reason for that. (45:57) But it doesn't make that product bad just because of that. (46:02) Because at the same time, it's works wonderfully for other people, for a lot of other people. (46:08) Right? (46:08) I
Scott Benner (46:09) That's the part that strikes me as as odd is that that it feels like an assault on you, you know, if it doesn't I mean, it's still technology. (46:17) You know how many techno you know, how many, like, electrical or computerized things that I've sunk my own money into over the years and gotten at home and been like, this doesn't work. (46:26) Right? (46:26) Or it's not doing what I needed to do. (46:28) Or I know it's not around your health, but, like, this stuff is.
Scott Benner (46:32) Like, you're not just I I said this before. (46:34) Like, this is a mechanical device. (46:36) It's plastic and metal and whatever else the hell it is being sunk into a human body. (46:42) And then then they've gotta try to find that space where it helps as many people as possible. (46:47) This is an incredibly complex thing.
Scott Benner (46:50) And that it works this well in just twenty years of production, it's changed generations of outcomes. (46:57) Like, it's amazing.
Rita (46:58) Yeah.
Scott Benner (46:59) And I think that for your own, you know, mental health, like, try seeing it like that a little bit. (47:05) And then I understand there's macro micro, like, you know, I don't know what to tell you if you're a person who it doesn't help or it doesn't work for the adhesive makes you break out. (47:13) That's horrible. (47:14) I can't I can't tell you how much. (47:16) I mean, it just breaks my heart that it that it it broke my heart that this person felt this way.
Scott Benner (47:20) But Yeah. (47:21) You know, once you go out in the public and you start saying things, well, then it goes from, like you know, like, that person came on here and had that conversation with me, I'd be very interested in hearing their perspective on it just like I'm interested in hearing yours. (47:33) But when you're in the public square and now suddenly you're yelling, this sucks. (47:36) They're jamming it down our throats. (47:38) I'm like, I don't know.
Scott Benner (47:39) Like, I'm sorry it's not gonna work for you, but my goodness. (47:42) Like, this is certainly not a thing that's being foisted upon people. (47:45) Also, go get a pen and a meter and I mean Yeah. (47:50) You know, you're still way ahead of where Mike was. (47:55) You know what I mean?
Rita (47:55) Yeah.
Scott Benner (47:56) Yeah. (47:56) Even with a meter in your hand and a and and 50 test strips and a and a and a pump that doesn't have an algorithm on it, you're still gonna live a long, healthy life. (48:07) Like so Yeah. (48:08) I don't know. (48:08) It's tough.
Rita (48:09) Especially with the level of knowledge that you can have access to today, right, which is also very different from, I don't know, twenty or thirty years ago.
Scott Benner (48:18) Sure.
Rita (48:18) Like, with the Internet, with your with your podcast, you know, with so many things, so many resources out there that if you're willing to learn, you can do it with pens and a meter and with a pump. (48:30) Is it the same? (48:31) No. (48:31) Is it equally easy or difficult? (48:34) No.
Rita (48:35) But but it can be done Yeah. (48:37) If you have the the willingness to to do it and and to learn.
Scott Benner (48:41) I agree. (48:42) Let's move on. (48:42) I don't wanna belabor this. (48:43) I don't wanna sound I don't wanna sound callous because I'm not but at the same time, I mean, I don't know. (48:50) I know I grew up in a different generation, but people acting like things are being done to them all the time is a little baffling to me, especially in a world
Rita (48:58) they were having a bad day
Scott Benner (49:00) I hope so. (49:01) I hope it's and I hope it's gotten better. (49:02) I I really do mean that. (49:03) I I I don't want for that person to be upset or for them to have a problem. (49:07) I I just think that I don't know.
Scott Benner (49:10) Anyway, how do you find the Juice Box podcast made by a guy in New Jersey in Portugal? (49:15) Although, I did check when you got here, and it turns out that I do chart in Portugal. (49:20) So thank you to all of you out there. (49:22) But how do you find it?
Rita (49:23) So, actually, I found it because I so when I started using Libre all those years ago, after maybe about eight months, I started having this reactions to the adhesive.
Scott Benner (49:35) Mhmm.
Rita (49:35) And I started looking online for this because at the time, I was probably one of the first people in the diabetes center where I go to that got it because I was also kind of an early user. (49:48) So they didn't have experience with this. (49:50) I also when I had the first reaction, like, I had no idea what that was. (49:55) And so I started looking online, and I found an article in your blog about, I think, a child that had kind of severe reaction
Scott Benner (50:05) You found that post?
Rita (50:06) Confadhesive. (50:07) Yes. (50:08) I found that post. (50:09) And I think that is where I found your podcast because it was, you know, the blog page, and you were already doing the podcast. (50:19) And then I started listening, and I've kept listening kind of on and off, sometimes more frequently or less frequently.
Rita (50:27) But since then, yeah, it's one of the like, for me, it's the main diabetes resource that I use to you know, not just to learn about management, but also to learn the stories that people share, like, that kind of community. (50:43) It is for me, it was your your podcast and the book Sugar Surfing that I also found more or less at the same time I found your podcast.
Scott Benner (50:52) Doctor Ponder.
Rita (50:53) Yeah. (50:54) Yeah. (50:54) So I'm I'm a big fan of the podcast.
Scott Benner (50:56) Rita, thank you. (50:57) I should have Doctor Ponder back on, shouldn't I? (50:59) I should reach out to him, see if he wants to do it again. (51:01) I think he did it in the first season. (51:02) This is, like, ten years ago.
Rita (51:04) Yeah. (51:04) I remember I heard that episode. (51:06) Yeah. (51:08) That was a long time ago in David.
Scott Benner (51:09) Certainly was. (51:10) First of all, that's really that's wonderful that you found it. (51:13) But how long ago did you find it? (51:15) How many years into diabetes?
Rita (51:18) So maybe so I've been using a pump for eight years, so maybe it was two years before that. (51:24) So maybe
Scott Benner (51:25) About six years ago you found this.
Rita (51:27) No. (51:27) No. (51:28) Longer than that. (51:29) Maybe nine
Scott Benner (51:30) years. (51:31) Oh, wow.
Rita (51:32) That. (51:32) So maybe nine.
Scott Benner (51:33) Almost from the beginning.
Rita (51:34) Yeah. (51:34) But I I have the feeling that when I started listening to it, you were already at it for a while. (51:40) So but it could it could be that you were already doing it for a year or more.
Scott Benner (51:44) I think that adhesive episode was, in the first or second season.
Rita (51:48) So I don't think I've heard that episode, actually. (51:50) I read the blog post. (51:51) I I wasn't aware that there was an episode on
Scott Benner (51:53) that, actually. (51:54) I I think if, hold on. (51:56) Severe adhesive, I think is how I remember the title being. (52:02) Talking Severe Adhesive Allergies with Henry's Mom, episode 14. (52:07) It was in May 2015, and then I made yeah.
Scott Benner (52:10) I made a blog post about it too. (52:12) So you the little boy and his face is all red, and he's got the horrible, like, almost, like, chemical burns around him and stuff like that. (52:19) Right? (52:19) And she figured out how to, like, block the the adhesive allergy
Rita (52:23) for Yeah. (52:24) And you listed the products there in the article and explained how they did it.
Scott Benner (52:28) And that helped you?
Rita (52:29) So for delivery, at some point, I stopped using it because I and then I knew I was going on a pump a few months after. (52:36) Mhmm. (52:36) And for some reason, I thought if I kept reacting to it, maybe I would react to the pump adhesive. (52:42) And then to the pump adhesive, actually, I had a reaction but much milder, and that was, let's say, easier to solve. (52:50) Mhmm.
Rita (52:50) And with so I've had problems with reactions to the sensor, even Dexcom, the g six. (53:00) But but I've in the meantime, I found ways to to address those. (53:05) Also, there are, like, some Facebook groups that you know, on on the rashes and the reactions. (53:10) So and there are many suggestions there. (53:13) And, eventually, I found something that works, let's say, most of the time for me.
Rita (53:16) So Good. (53:17) I can use a pump and a sensor relatively okay without any any further issues. (53:23) But that was hard. (53:25) So that when I reacted to the deliberate decision, at some point, I decided to stop using it because it was just, you know, too much. (53:33) Mhmm.
Rita (53:33) That that was hard. (53:34) That was hard. (53:35) Yeah. (53:35) Because at the time, there was no alternative for sensors. (53:38) So I went back to pricking my finger many times a day for some months, maybe half a year or something.
Rita (53:44) Yeah. (53:45) And then I I started with the Dexcom.
Scott Benner (53:48) It is really sad that this, you know, immune issue that people so many people have, you know, some of it you know, sometimes it cause you not to be able to make insulin, then you're suddenly you have to use an adhesive, and then you find out that your immune system doesn't like the adhesive and like it's but I'll tell you, it is some days you just feel like, my gosh, this won't stop, you know. (54:09) Whenever somebody's talking about something that, you know, got down inflammation or turned off an immune response for something, I get excited about. (54:17) Hopefully, that's way things can go in the future.
Rita (54:20) Yeah.
Scott Benner (54:20) So you find the podcast before your pregnancy?
Rita (54:24) Yes. (54:24) Way before.
Scott Benner (54:25) Yes. (54:25) What was your a one c before I I'm this will sound self serving. (54:28) I don't mean for it to be. (54:29) But, like, what was your a one c, your outcomes like before the podcast and after it?
Rita (54:33) So I was, well, almost always in relative good control. (54:38) So I was in the sixes
Scott Benner (54:40) Nice.
Rita (54:41) For many years. (54:42) The highest I've been, I think, was 7.7 once. (54:45) Mhmm. (54:46) And maybe for a year or something, I was in the low sevens. (54:50) But I don't remember, like, before and after the podcast.
Rita (54:54) So what I liked about the podcast is that and and also the book, Sugar Surfing.
Scott Benner (55:00) Yeah.
Rita (55:00) It was that some things that I was doing by trial and error that, you know, that you were also doing with your daughter and others were doing it. (55:10) And, well, in the end, we were not crazy about doing those things contrary to what, you know, sometimes doctors tell you, like, to do things. (55:19) So so in a sense, it was kind of validating for me to see, oh, you know, I'm doing this, and other people are also doing kind of similar things, and it works. (55:30) So, therefore, we're not crazy. (55:32) Mhmm.
Rita (55:33) You know, sometimes it it's your doctor says, oh, you know, do it this way or that way, and and then it doesn't work. (55:40) And sometimes it's hard to understand why it doesn't work, and then you go on trial and error until you find something that works for you. (55:47) And you get to the office, you say, oh, I did this and say, oh, okay. (55:50) Interesting. (55:50) If this works for you, okay.
Rita (55:52) But, like, no one else is doing this. (55:54) Yeah. (55:54) So so it was kind of validating in that sense.
Scott Benner (55:58) You're not the first person I've heard say that recently. (56:01) Somebody said it to me recently too, and it was impactful for me. (56:04) Like, just the knowledge that, like, hey. (56:06) Other people are doing this, and I'm not crazy. (56:10) I'm the thing I think I'm seeing, I'm seeing is really helpful.
Rita (56:14) Yeah.
Scott Benner (56:14) Yeah. (56:14) That's awesome.
Rita (56:15) So before I went on a punt, even with pencil, I think what really did change it for me was the CGM because you could see things and you could way easily Yeah. (56:27) Address them or at least easier than before. (56:31) So before I went on a pump, so those maybe last couple of years with pens, I was in the five, so mid to high fives, and I'm still in that range with the pump. (56:43) So when I switched to the pump, I basically kept more or less the same a one c's.
Scott Benner (56:49) Awesome.
Rita (56:49) So from, I don't know, five five to five nine or six.
Scott Benner (56:53) Oh, that's really lovely.
Rita (56:55) Yep. (56:55) So it's been like that.
Scott Benner (56:57) So you have your baby, and, you know, how old is she when she's diagnosed then?
Rita (57:02) She so I I took so she was, well, I guess diagnosis in the sense that, we know she's type one or she'll need insulin eventually
Scott Benner (57:11) Oh, I see.
Rita (57:11) As she was four. (57:12) But yeah. (57:13) So I I we screened her because I so I I think I had learned actually about screening tests probably from your podcast at the time. (57:23) So when she was born, there were no screening programs here, at least none that I knew of. (57:29) But then when she was four in the diabetes center I go to, they started, like, a screening for kids initially for children of people with type one or for siblings of type ones, and then they extended it to the general population.
Rita (57:48) Mhmm. (57:48) And so when I saw that, I thought, okay. (57:50) Like, I I always thought, well, if I have a kid, I will take her to screening. (57:55) But, of course, I thought she would test negative, and she did not. (57:59) So she she was four in a few months.
Rita (58:03) At the time, she tested positive for two antibodies, and then they ran glucose tolerance test, which she passed. (58:13) But they also tested her a one c, and she was at 5.8. (58:18) And so because she was, you know, already kind of outside the norm, I spoke to the doctor, and we agreed to put a sensor on her. (58:28) And then, you know, a few hours, I saw that things were not well. (58:32) Yeah.
Rita (58:32) A few hours, she put the sensor. (58:34) So so she was four, but she only started on insulin when she was almost five and a half. (58:43) Okay. (58:43) So that was more or less a year since we found out that she was in phase two already beef and before she started on insulin.
Scott Benner (58:51) I see. (58:52) It was it shocking to you? (58:54) Is it hard for you to adjust to the idea, or did you I mean, how did it hit you?
Rita (58:58) Was hard. (58:59) Yeah. (59:00) It was hard to hear that she had tested positive. (59:04) So at the time, of course, I did not know she was in phase two already. (59:08) So when they told me she had tested positive for those two antibodies, but I knew she would get it.
Rita (59:13) Right? (59:13) Because well, at least most likely, she would get it throughout her life. (59:17) And then, you know, I guess, that year so she she always then she started using a sensor, and she used the sensor, I guess, because I wanted to, for that whole year. (59:30) Because I thought that when she started I thought it would be quick, you know, for her to start on insulin.
Scott Benner (59:38) Yeah.
Rita (59:38) But it was not as quick as I expected.
Scott Benner (59:41) That's good, by the way. (59:43) The longer she the longer she has beta cell function, maybe the more, you know, she can kinda maintain. (59:49) It was put to me recently that, you know, Arden was diagnosed so young. (59:54) I didn't realize that, like, beta cells are still kinda multiplying as you're growing, which makes sense. (1:00:00) Right?
Scott Benner (1:00:01) It would have been nice if Arden could have made some a little longer, I guess. (1:00:04) And Yeah. (1:00:05) And so I'm, you know, I'm glad for her that it that it took as long as it did. (1:00:10) How was she I mean, that's pretty young. (1:00:12) Right?
Scott Benner (1:00:13) Like, so but how is she now, like, with having diabetes? (1:00:16) Is it, a connection for the two of you?
Rita (1:00:19) Yeah. (1:00:19) I think it's a yeah. (1:00:21) I think it is because so on the one hand, she's she she she would see me doing things when I knew she would, you know, eventually start on insulin, I was also more kind of vocal and showing her, oh, like me. (1:00:36) See, I'm changing my pump side, taking a shot, or I'm pricking my finger. (1:00:41) So that kind of awareness even before she knew that she would, you know, one day have to to take insulin.
Rita (1:00:48) But it yeah. (1:00:48) It is it is a connection and something that we can connect over.
Scott Benner (1:00:54) Is it easier to take care of yourself or of her for outcomes that you're looking for?
Rita (1:00:58) So I I would say that, so she started on a pump actually in September.
Scott Benner (1:01:03) Mhmm.
Rita (1:01:03) And I would say that, okay. (1:01:05) Since she started on insulin, I've been more focused on her care, but and myself on autopilot. (1:01:13) But even with myself on autopilot, things are going well for me. (1:01:17) So it didn't change, you know, my management Yeah. (1:01:21) Substantially.
Rita (1:01:22) Because, I guess, on the one hand, I kind of know what I'm doing. (1:01:26) Does not mean that I don't, you know, mess up sometimes with me or with her, but I'm I'm more kind of on autopilot. (1:01:36) Maybe I could I would be a little bit more on top of things if wasn't type one, and I didn't have to pay attention to that. (1:01:44) Yeah. (1:01:44) But I don't think things would be dramatically different.
Scott Benner (1:01:47) But her having diabetes has used up a little bit of your compute cycles, and you can't give as much to yourself as you had in the past.
Rita (1:01:53) Sure.
Scott Benner (1:01:54) Yeah. (1:01:54) Yeah. (1:01:54) That may make sense. (1:01:55) Yeah.
Rita (1:01:55) Yeah. (1:01:56) But I don't think overall to the detriment of my quality of care, like a little bit, but not substantially. (1:02:03) So that's what I
Scott Benner (1:02:04) because you're already there too. (1:02:05) You knew how to Yeah. (1:02:06) Yeah. (1:02:07) If the yeah. (1:02:07) If this would have been at a time when you were struggling still, then in that, it could have been a different thing for you.
Rita (1:02:13) Absolutely. (1:02:14) Yeah. (1:02:14) Absolutely. (1:02:15) Yeah.
Scott Benner (1:02:15) Wow. (1:02:16) How involved is your husband with the diabetes? (1:02:19) Is it one of those things where it's like, oh, you know how to do it. (1:02:22) It's yours, but or is he is he helpful?
Rita (1:02:25) No. (1:02:26) He I I think it it will he relies maybe more on me because of my, experience, but he's able to do it, like, more or less independently. (1:02:38) Maybe not the way I would do it, but he will get there, I guess.
Scott Benner (1:02:42) Yeah.
Rita (1:02:42) But but he relies more on me, of course, because of the experience I have.
Scott Benner (1:02:47) Do you think your daughter's diagnosis made him see you differently?
Rita (1:02:51) Myself? (1:02:52) No. (1:02:53) I don't think so.
Scott Benner (1:02:53) Did he have a very deep understanding of your diabetes already, or did her being diagnosed and him seeing it and having to think about it for her, do you think it do you think it made him look and go, oh, I didn't realize that Rita was going through some of this?
Rita (1:03:07) No. (1:03:07) I think he had
Scott Benner (1:03:08) a You know?
Rita (1:03:08) Relatively good idea. (1:03:10) Yeah. (1:03:11) So maybe not the intricacies of management, but, like, the big general ideas, I think he he was aware of it. (1:03:18) Okay. (1:03:18) So I I don't think there was, like, a big change on that.
Rita (1:03:22) But, of course, it's very different to know something and then to have to manage it on your own. (1:03:28) Right? (1:03:28) Or or or manage it for someone else.
Scott Benner (1:03:32) No kidding. (1:03:34) Yeah. (1:03:34) Right. (1:03:35) Knock you over some days. (1:03:37) It's interesting.
Scott Benner (1:03:38) You you have a note here that says the importance of health care professionals at diagnosis and letting go of the supposed official rules of management. (1:03:48) What was your experience with getting rules and and having to get rid of them?
Rita (1:03:52) Yeah. (1:03:52) I think what I meant by that is that, you know, you were told, all of these different things at diagnosis, which apparently are very similar to people, you know, across the world or in many countries. (1:04:04) That's what I hear from, you know, all of your guests. (1:04:06) But then as you well know, that's kind of the crash course. (1:04:10) Right?
Rita (1:04:10) And that's not maybe the best way how to manage things than in practice. (1:04:15) Right? (1:04:16) And I I think letting go in the sense of, okay. (1:04:19) What these people are telling me, they they mean well, but they don't really know what they're saying sometimes. (1:04:25) You know?
Rita (1:04:26) They're not probably providing the best advice because they are advising on management, but they're not managing it themselves. (1:04:34) And sometimes things are very different. (1:04:37) And I I think letting go in the sense of I can, like, learn by myself. (1:04:42) I can do things by trial and error and learn from that and learn what it how it works for me and how and that is important in the sense of not just, you know, following your doctor's orders because maybe that will get you to a point, but not to the best point where you can be.
Scott Benner (1:05:01) Yeah.
Rita (1:05:01) And I've been lucky with in general with the the the endos I've had, but most of what I know, like, most of the valuable things I know how to do, I didn't learn it with them. (1:05:17) I learned them by trial and error. (1:05:19) I learned them through your podcast. (1:05:21) I learned them through, I don't know, sugar surfing or other resources out there, not through, you know, the doctor's advice necessarily.
Scott Benner (1:05:30) Yeah.
Rita (1:05:31) They have their role, and it is important. (1:05:33) But it is important that people, in my view, take ownership, right
Scott Benner (1:05:39) Yep.
Rita (1:05:39) Of their own care if they are if they are at that point, let's say, in their lives because there are many things that can make this further. (1:05:47) But I could give you an example. (1:05:49) Like, the rule of 15. (1:05:50) Well, as many people have found out that that doesn't work as it should be, as it should many times. (1:05:59) Right?
Rita (1:05:59) So that ability to change gears and to see, okay. (1:06:02) This doesn't work for me, so let's try something else. (1:06:05) And what I hear sometimes in my end of appointments is that they will tell me, yeah. (1:06:10) You know, but you you change your settings in your pump. (1:06:12) You do this.
Rita (1:06:13) You do that. (1:06:14) But most people we have here, they don't do that, and that's something I cannot wrap my head around. (1:06:19) How can I not do that? (1:06:21) You see?
Scott Benner (1:06:22) Maybe the most important thing that you can do as a person living with diabetes is understand how insulin works and feel the autonomy necessary to change your settings.
Rita (1:06:31) Yeah. (1:06:31) Exactly.
Scott Benner (1:06:32) That's really going to help you live easier, better, longer, healthier. (1:06:37) It's a hallmark of of people who have success.
Rita (1:06:41) Yeah. (1:06:42) Totally agree. (1:06:42) But it seems that at least for some people, it's very, very hard to do that because, you know, the doctor or maybe they think the doctor knows best because they're the doctor. (1:06:52) Right? (1:06:52) But and and sometimes even people that have been with type one for a long time.
Rita (1:06:58) So that is also always a bit confusing to me.
Scott Benner (1:07:01) I've done my best to interview people so that you all can hear the different personalities that intersect with diabetes and all the different reasons why people might, you know, not take as much, I don't know, control or, you know, be as involved or whatever. (1:07:20) Some people like, some people lay back, some people think the doctor knows better than me, some people are people pleasers, you know, some people are like me and they're like, I don't that doesn't make sense to me. (1:07:30) I'm not doing that. (1:07:31) You you know, like, there's so many different so many different ways that people think. (1:07:35) I just hope that I've done a good job of, you know, shining a light on all of them or as many of them as possible so maybe you can hear yourself in those other people and then say, like, oh, I could see where that would be valuable for me to, you know, x y z do something or do something differently or whatever.
Scott Benner (1:07:49) Rita, I have to ask you. (1:07:52) Portugal, how's the weather? (1:07:53) Do I wanna move there? (1:07:54) I'm looking for a place to go when I retire. (1:07:56) Is this the place?
Rita (1:07:57) Well, apparently, a lot of people move here.
Scott Benner (1:07:59) Are they?
Rita (1:08:00) After they yeah. (1:08:01) Yeah. (1:08:01) And I think there's a big American community now, in Lisbon with digital nomads and etcetera. (1:08:07) So not just people that retire, and come here. (1:08:10) But, yeah, the weather is, weather is nice.
Rita (1:08:13) We are not, I would say, as a Mediterranean country as some other, neighboring countries because we're on the Atlantic, But, but the weather in general, it's it it is nice. (1:08:24) Yes.
Scott Benner (1:08:24) Yeah. (1:08:24) I mean, these every time you see a picture of there, it's just colorful houses and the ocean.
Rita (1:08:30) And Yeah. (1:08:31) But, you know, those are, like, the marketing.
Scott Benner (1:08:33) Those are the marketing pictures. (1:08:35) Right? (1:08:35) Like Yeah. (1:08:35) Yeah. (1:08:35) Exactly.
Scott Benner (1:08:36) Where am I gonna end up living? (1:08:37) I'm not gonna live in one of those giant houses by the you know, with I mean, there's like a castle on the ocean here. (1:08:42) What am I looking at? (1:08:43) I I I'm not gonna be able to rent a house in there.
Rita (1:08:45) Yeah. (1:08:45) Yeah. (1:08:46) Most places here are not castles on the ocean. (1:08:48) Indeed. (1:08:49) Yeah.
Rita (1:08:50) But it's nice to visit. (1:08:51) I mean, you can always come and visit. (1:08:53) Maybe do a juice box podcast or juice box event here. (1:08:57) I think, yeah, that people would appreciate that. (1:09:00) And then you can decide if you want to stay.
Scott Benner (1:09:02) Are there are there a lot of type ones there? (1:09:04) Do you have, like, friends in real life that have type one?
Rita (1:09:06) So from my diagnosis onwards, I didn't from for the longest time, I didn't know any other type ones because I was not diagnosed as kid. (1:09:14) So for kids, you know, you have, like, the summer camps or type one kids, etcetera. (1:09:20) So I was diagnosed as an adult. (1:09:23) And so I didn't let's say, did not have access to that. (1:09:25) And for the longest time, I didn't know anyone else.
Scott Benner (1:09:27) Yeah.
Rita (1:09:29) I know a few people that are type ones themselves, but I'm not in close contact with them. (1:09:37) The people that I'm closer to now are a couple of other parents of type one kids
Scott Benner (1:09:42) k.
Rita (1:09:43) Which they don't they themselves are not type one, but their their kids are.
Scott Benner (1:09:47) Okay. (1:09:48) Is that tough, or do you just do you use the online community for that part?
Rita (1:09:53) Yeah. (1:09:53) I think the online community and I think it was tough in the first years as from my diagnosis that I didn't know anyone else, and I was kind of doing it, you know, alone. (1:10:06) But at some point, then it stopped being important. (1:10:10) I would say I would just you know, it just became part of my life.
Scott Benner (1:10:13) Back to living.
Rita (1:10:14) And it didn't have that prominent, you know, role or prominent place in my day to day life. (1:10:23) Yeah. (1:10:24) But it is good to have, I would say, now a community online community that you can turn to if you need, but also people in real life, in this case, the parents of other type ones because they under they understand things in a a way that others can't. (1:10:43) Right? (1:10:44) Yeah.
Rita (1:10:44) So
Scott Benner (1:10:45) Alright. (1:10:45) Well, I'm gonna, I'm gonna keep looking at Libson. (1:10:49) So, also, do you know, you're you live in Lisbon. (1:10:54) The company that that, that I I used to get my podcast to you is called Libsyn.
Rita (1:11:01) Oh, okay. (1:11:02) I did not
Scott Benner (1:11:03) correct. (1:11:04) You would have no way of knowing that. (1:11:05) I just realized, like, I I I'm running a very real risk of mispronouncing Lisbon while I'm talking because of that. (1:11:12) But, yeah, it does look like a nice vacation spot, though. (1:11:16) Check it out.
Rita (1:11:16) It is. (1:11:16) Yes. (1:11:17) And not just the capital, but, the rest of the country is nice too. (1:11:20) So, yeah.
Scott Benner (1:11:21) People have cars? (1:11:23) Is it a car place, or is it a is
Rita (1:11:25) it a Lisbon is a car place.
Scott Benner (1:11:26) Yes. (1:11:27) Yes. (1:11:27) I don't wanna get rid of my car. (1:11:28) I like having a car. (1:11:29) I would have trouble moving.
Rita (1:11:31) We are definitely a car country and a car city. (1:11:34) Yes.
Scott Benner (1:11:34) Okay. (1:11:35) Okay. (1:11:35) Alright. (1:11:35) I can do it then. (1:11:37) But, I mean, it's gonna be warm.
Scott Benner (1:11:38) Right?
Rita (1:11:40) If you come in summer, yes.
Scott Benner (1:11:41) It's really
Rita (1:11:42) Spring, autumn, better. (1:11:44) Winters are not so cold. (1:11:46) So maybe I don't know. (1:11:48) Well, again, Celsius, so not in Fahrenheit. (1:11:51) Let me check.
Rita (1:11:51) Maybe I would say, I don't know, lowest in Lisbon at least where the weather is milder, 10 degrees would be the coldest, so that's 50 Fahrenheit.
Scott Benner (1:12:01) I can do that. (1:12:02) Okay.
Rita (1:12:02) In the in the capital. (1:12:03) Yeah. (1:12:04) Other places, it gets colder. (1:12:06) Yeah.
Scott Benner (1:12:06) I'll put it on the list. (1:12:07) I'll never leave here. (1:12:08) I'll just I'll just I'll talk and talk and talk about leaving and just die in this house, probably.
Rita (1:12:13) Just come to visit. (1:12:14) That would be nice.
Scott Benner (1:12:15) I would like to see the place. (1:12:16) It is really just lovely. (1:12:17) I can't thank you enough for doing this, Rita. (1:12:19) I wanna make sure that have we talked about everything that you wanted to get get to?
Rita (1:12:23) Yeah. (1:12:23) I'm just happy to, you know, contribute somehow to to your podcast. (1:12:28) I'm a fan, so it was a great pleasure to to talk to you.
Scott Benner (1:12:32) It was lovely to speak with you as well. (1:12:33) I can't thank you enough for your time. (1:12:35) It it it means the world to me that you were I mean, anybody comes on here and and shares their story like this. (1:12:40) So thank you so much. (1:12:42) I really do appreciate this.
Scott Benner (1:12:43) Can you hold on one second for me?
Rita (1:12:44) Sure. (1:12:45) Thanks, Scott.
Scott Benner (1:12:45) Yes. (1:12:46) Thank you. (1:12:54) A huge thanks to my longest sponsor, Omnipod. (1:12:58) Check out the Omnipod five now with my link, omnipod.com/juicebox. (1:13:03) You may be eligible for a free starter kit, a free Omnipod five starter kit at my link.
Scott Benner (1:13:11) Go check it out. (1:13:12) Omnipod.com/juicebox. (1:13:14) Terms and conditions apply. (1:13:16) Full terms and conditions can be found at omnipod.com/juicebox. (1:13:23) US Med sponsored this episode of the Juice Box podcast.
Scott Benner (1:13:27) Check them out at usmed.com/juicebox or by calling (888) 721-1514. (1:13:36) Get your free benefits checked and get started today with US Med. (1:13:42) Thank you so much for listening. (1:13:45) I'll be back very soon with another episode of the Juice Box podcast. (1:13:48) If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple Podcasts, please do that now.
Scott Benner (1:13:56) Seriously, just to hit follow or subscribe will really help the show. (1:14:00) If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. (1:14:07) And if you leave a five star review, oh, I'll probably send you a Christmas card. (1:14:11) Would you like a Christmas card? (1:14:21) My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for.
Scott Benner (1:14:29) There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. (1:14:35) And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. (1:14:42) What do these three things have in common? (1:14:44) They're all available at juiceboxpodcast.com up in the menu. (1:14:48) I know it can be hard to find these things in a podcast app, so we've collected them all for you at juiceboxpodcast.com.
Scott Benner (1:14:56) Have a podcast? (1:14:57) Want it to sound fantastic? (1:14:58) Wrong way recording.com.
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