#706 Bold Beginnings: Adult Diagnosis

OmnipodJuicebox PodcastInterviewType 1 DiabetesBold Beginnings

Jun 24

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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

Scott Benner 0:00
Hello friends, and welcome to episode 706 of the Juicebox Podcast.

Today is going to be the second installment of the bold beginning series. While you're listening to this episode, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juicebox. To take the survey, the T one D exchange survey benefits people living with type one diabetes, it's incredibly easy to do and will take you fewer than 10 minutes, T one D exchange.org forward slash juicebox. Also, today, you're going to hear Jenny Smith, Jenny is a CDE. She has had type one diabetes for over 30 years. And she works at integrated diabetes.com If you're interested in learning more about what she does.

This episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes in pen is an insulin pen that talks to an application on your smartphone and gives you much of the functionality that you will get from an insulin pump in Penn today.com. Today's show is also being sponsored by touched by type one, I need you to go to touched by type one.org. When you get there, go to the program's tab, click on annual conference and get your free tickets for the 2022 touched by type one Annual Conference, which will be held on August 27. in Orlando, Florida. I think last I heard, I'm going to be speaking, I think in three or four different sessions there. So come on out. Let's talk about some diabetes touched by type $1. Work. So Jenny, here are the questions that adults asked in the Facebook group. And that is, here's a statement. This one says that newly diagnosed those are often treated as type twos for a while, then we get tested and learn why nothing ever quite worked. I think a lot of should be more widely known about. So if you're diagnosed as an adult, I mean, Fair's fair, what I hear from most people is and it's, it's wrong, but doctors look at them. And if they look like they're reasonably in shape and fit, they think they have type one. And if they look like they're not they think they have type two, and it's very common to be to be stuck into a category without anybody.

Jennifer Smith, CDE 3:12
Correct. And that's in a I mean, what you just said is also in an environment with doctors who really are thinking type one thin, normal size looks, you know, like they maybe are an athlete or something like that. I'll actually say I mean, I've got a number of people that I've worked with over the years that are athletes, like I've worked with a couple endurance athletes who were initially misdiagnosed in the emergency department, as type two and sent home with completely a lack of information and a prescription for oral meds that were not going to do anything for them.

Scott Benner 3:54
Yeah. Yeah. You'd be surprised how many people I've spoken to who are dismissed at their diagnosis because the very next statement here on in our questions is, when I was first diagnosed as an adult, I couldn't get in to see an endo for a while because I wasn't quote unquote, critical and I wasn't hospitalized for DKA. And one of their first questions was, how do you even know I'm a type one. And you know, nobody does antibody testing right away for you. And this person says I just wish I would have known to ask for a C peptide test. When this was starting. It is not uncommon at all handful of metformin get home, take these come see us in a month, let us know how you're doing except you don't have type two diabetes. You have type one diabetes, and that's not going to help you. So and then you are in a real you're at a risk then a significant risk. Yeah.

Jennifer Smith, CDE 4:48
Yeah, absolutely. And I think that the issue there too, is adults. We're we're very misinformed when it comes to our education system. All right, we just we really are in terms of many health conditions, but diabetes included, there's still a lot of really good misinformation out there about diabetes. And so as adults, if you have all these symptoms, and you have no knowledge of diabetes, no personal history from family member or friend or anything, you may go to the doctors because you don't feel very good eventually. And then you get diagnosed, we are told your type two diabetes, well, maybe you don't even know there's type one diabetes, or you don't even know that you should ask to say, Well, gosh, this doesn't seem to be what I you know, what, what I would fit into for a diagnosis? I think so I think teaching is important. Yeah, it's

Scott Benner 5:48
important to know that you can be thin and lean and healthy and have type one or type two diabetes. Correct, right? I mean, and there's just so many in here, like I was diagnosed a month ago, at age 55, a week after my birthday. How was that possible? No one in my family has this. I was 50. My first question was, what the this person is obviously shocked. And then the next thing I want to get to, which I think is super important is, and I won't read the whole thing, but diagnosed at 47 years old, full time job, fast paced lifestyle. They can't get started, really, they don't know anybody that has diabetes, they're busy, they get up, they go to work, they're counting. They're I mean, people end up being hopeful, right? Like this person probably lived their whole life, you get sick, someone gives you a medication, you take two a day for seven days, you feel better. That's that, right? What you expect when this happens. And then when that's not the case, they say, look, it's almost five years later, I still struggle with my Basal with my Pre-Bolus times, this person doesn't know what they're doing. And so

Jennifer Smith, CDE 6:47
and I think a big thing of it goes a little further than not necessarily knowing what they're doing. One, I've found, definitely, that adults diagnosed with type one and absolutely with type two, are very poorly educated from the beginning, in terms of what to do, but along with that is they've already had a life and a schedule and a structure to that life, adding in something that they haven't been given the right information many times from the get go. And now they have to disrupt a lot to learn how to fit this in, to what their schedule was. Whereas kids are, they're different. I'm not saying that it's not difficult, but it's different, because who's helping the child

Scott Benner 7:43
write it because when you're diagnosed as an adult, it's on you, it's on you. And when your diet when a child is diagnosed, some person I mean, hopefully, right? A caregiver basically stops the rest of their life to figure this thing out, because the diabetes is really a newborn baby, all of a sudden, correct can't help itself. If you don't know what you're doing yet. And it's a it's a very slow process and a scary process and, and a process where you feel like you're about to drop the baby every five seconds. And, you know, you just sit on the sofa. But, you know, it's funny to piggyback on what you just said, and the next question, somebody said that they got a ton of code, they got a ton of information in their education at the hospital, but none of it's happening in their real life. So what they, they felt like they left completely prepared,

Jennifer Smith, CDE 8:29
which is great to hear that yay for whoever educated you.

Scott Benner 8:35
And then there you go, you shop at home. And there's nothing there, the person actually said I had to start listening to the podcasts and reading posts in the Facebook group, but that they still feel out of control. You know, please do a show for older diagnosed people, a different issues like work pressure schedules, exercise, cycles, evening events, etc, etc, all these things, and it's very liquid. It's very true. I mean, Jenny, you know, like, if my daughter runs on a schedule, I can run her blood sugar, like it's nothing but if you start throwing in a bunch of different problems, ya know, and variables like this adult issues, it changes and I never go ahead and say that, you know, Sam, so no, I

Jennifer Smith, CDE 9:16
was gonna say you're AB you're absolutely right, adult issues are your own to manage to begin with, and many, thankfully, there are a good number of people who have a very supportive, significant other spouse, or a really good friend that, you know, gives them some support or help. I think one of the, not everybody has this option, but I've had a couple of people who've actually after diagnosis, they actually decided to do the best they could for themselves to really get an idea. They took one or two weeks off of work. And they said I am I'm just gonna I mean if I'm going to really nail understanding this as much as I can, and then I'm going to add this other variable back into the picture. I'm going to add work back. Now I'm going to add exercise back. It's but there are a lot of adults who don't have that option, you don't have the time you can take off. So you have to do diabetes, along with what was already in your life. And it adds a layer. I mean, I can say, as somebody who had had diabetes, long time before I had kids, adding kids into the picture has added a layer to my management that is very different than I did before.

Scott Benner 10:28
Yeah, I saw a woman walk out of an elevator yesterday with a libre on her arm, and she was lugging a baby, and had a four year old behind her. And I thought, oh, that's different than just walking off the elevator. It really is. You know, it's, there's this this next person said it this is very interesting, because I brought it up in the honeymoon episode for newly diagnosed but this person says, I thought I was doomed. I was in denial. And I spent days researching articles about potential cores, cures, excuse me supplements to prevent disease progression and everything. So they fell down a rabbit hole. Then they said they went into a depression, hopelessness. And on top of all that, blood sugar is all over the place. Yeah, yeah, let me keep reading, I kept calling my doctor when numbers didn't make sense. And they repeatedly told me it's okay, if you're 180 to 200 for a few hours after you eat, you're not damaging yourself unless this occurs for long term.

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Jennifer Smith, CDE 14:06
Right, but how do you stop it now? Like if it's occurring, and it's damaging long term? Well, then tell me what I should do. So I can stop it from happening long term. Yeah, excellent. Right. Like it's

Scott Benner 14:17
like, they feel like they're like, you could do a little math, you'll be alright. But that leads to a meth problem. Right, right. And it really is the same thing. Like I didn't I'm sorry, it's such an odd if anybody has a math problem, I'm so sorry. But like, I mean, it's just like, that's how it seems to me. It's just like, Absolutely, Hey, it's okay. Don't worry about it. But it's okay. Don't worry about we have so many episodes where people say, listen, they told me it was okay if I was up to 180. And then one day it was 190. And I thought well, that's only 10 More than one ad and then 200 was only 20 More and then 250 was only 50 More than 200 and I was okay with 200 Before you know it, blah blah, blah, blah, blah. Right and it's not it doesn't help you in this moment when here you On your house hopeless, alone, feeling depressed, unable to manage diabetes? I think the one of the, you know, I'll tell you a genuine I don't know if I would have said this five years ago, but having that Facebook page really teach me like you have to go find other people. Because for a little while, you need to know that other people live with this, and they do a good job.

Jennifer Smith, CDE 15:23
Because I was gonna do the same thing. Yeah, yeah, hope is incredibly

Scott Benner 15:27
important. And I'm not saying you got to go to some like type one retreat with people or something like that if you want to you can but but just knowing it I, I interviewed a girl this morning. I see if I can tell this really quickly. Last year I ever interviewed a girl from Canada who was allergic to insulin. i Yeah, figured it out. A doctor in Texas heard the podcast, she had a patient who was going through something similar. The doctor called me I put the doctor in touch with the person from Canada. conversations went back and forth. Long story short, the girl in Texas started using a Frezza. And she's doing much better now. During the conversation that I just had with her the girl from Texas, which is in the podcast summer, like go find I think it's called allergic dance on Park.

Jennifer Smith, CDE 16:20
All right. That's my alert that I should have turned off for going to pick my child up from the bus stop, which is not my job this afternoon. That

Scott Benner 16:29
kid can wait, Jenny, we're making a podcast. Wait, tell him to stand there a little longer, he'll be fine. But in the course of interviewing this girl from Texas, the mother spoke about how this is such a rare thing. But that she found a Facebook group with seven people in it who are allergic to insulin. And it was everything to her. Yeah, everything to find those other people, right. And I just think that it's not. For some people, it is not going to be intuitive to go look for other strangers and find comfort in them. But I am telling you, I've been doing this a long time. And not nearly as long as Jenny has been. And it's incredibly important.

Jennifer Smith, CDE 17:12
No I and I wouldn't 100% agree with that I would include for adults specifically too, don't be afraid to reach out for some type of mental health support to there's a lot that you have to navigate and it really helps to have somebody to even maybe help you get some structure or an idea of how to restructure things. I asked an adult as you said from a touch point, I I did not have diabetes friends, really, until I was an adult. I didn't. I had the people that I got to work with on a clinical bases. But I really didn't have anybody I connected with until I went to a diabetes like athletic training camp. Right.

Scott Benner 18:09
And you met people there

Jennifer Smith, CDE 18:10
and I met you it was it was like diabetes disney world to me. Everybody was beeping and buzzing and complaining about blood sugar's and how are you going to adjust before the five mile run? We're going to go on? I mean, it was I smiled the whole time that was there. Because it was exciting to connect.

Scott Benner 18:31
As as crazy as this might sound. I know this is a weird statement. But for you personally, if everyone in the world had type one diabetes, that would be better for you. You'd,

Jennifer Smith, CDE 18:43
right? I mean, the whole the whole world would just, it would just understand it wouldn't be a oh, well, you know, I'm gonna bring that special dessert for you because you have diabetes, kind of like the weird comments that you end up getting, right? No, just you don't understand. So sometimes that is even off putting for you as an adult to try to explain to somebody because there's so much missing that you can't explain in just five minutes of why you could actually eat the regular dessert if you wanted to. You just don't bother and you're by yourself. And then you're by yourself. And

Scott Benner 19:23
listen, I only have the context of a parent but I can tell you that when your child is diagnosed, you have no recourse you're not you know, I'm not I'm not I'm not dropping her in a in a basket or a fire station. She's my kid I'm gonna figure this out right

Jennifer Smith, CDE 19:36
she's not Moses you're not gonna let her go down the street

Scott Benner 19:42
I'm not very religious Jenny So I don't know that whole thing but it did pop into my head about should I say I didn't float it out or stream but I couldn't remember the whole parable. Anyway. The it slowly you understand it? And you don't you don't you give yourself over to it. It's a life change. As much as you won't want it to be at first, and you may do a really good job of giving diabetes, a lower impact in your life, but it's going to have one of the only, like, the only thing I can say is, you know, when you get a bad cold, and for three days, you just the world understands, you're going to lay down, you're going to be sick, and nobody's going to hear from you. And you find a way to make that time you do that when you're the parent of a child, you okay? Well, we're, you know, as an example, we were in the we had just renovated a portion of our home when our son was diagnosed, we'd done it, and we had it broken into two phases. For five years, while I learned about diabetes, my children had to jump out the front door, because I didn't have steps. And that is one, that's great. Yes, that is one of the things I put on the back burner, while we were figuring out diabetes, for Arden. And but when you're going to be an adult, and this is going to happen to you, there's no one there. I mean, maybe you have a spouse if you're lucky, right. But you'll be surprised at how many adults I see who try not to share their diabetes with spouses, which is a personal decision, you know, so you're going to have to say to yourself, I got to look at this 24 hour clock at this seven day, calendar this 30 day month, and find some time in here to just learn about this, and find a way to incorporate it because unlike a bad cold, it's not going away, but it will get you know, if I if I had something hopeful to say I would say that diabetes doesn't get easy. But sometimes you get so good at it that it can feel easy, some days. And those days sometimes grow into weeks, where you just go, oh, this was an All right, you know, you're gonna have to make that time in your life, you can't just put your head down and run through it, because it's not going to work that way. And you

Jennifer Smith, CDE 21:45
can start in from an adult perspective of a major change to your structure or your day schedule. Even if you just start with a basic of kids, then given this medicine called insulin, and I was told to take it, here. And here. If that's where you start, then that's That's it? Yes. Just take what you were told to take. And then moving on, you can kind of build on that. Especially if you've got technology, I would say that's another big one that adults should definitely ask about. I know, parents are definitely the ones to beat down knocked down camp outside the doctor's office until they get the products and the technology that they want. Adults do the same thing. Yeah, I asked for a CGM right away on diagnosis, you know, ask for a pump. And or start the discussion sooner than later, depending on you know, what you think you can handle

Scott Benner 22:46
to, to use a phrase from the podcast or something else, you should dictate the pace? Don't Don't let a doctor say, hey, we'll look at it three months back. No, no, let's do it. Now. You know, I want to get an insulin pump. Let's start that right now. I don't want to talk about it three months from now, you know, the other thing is, too, is you know, I tell people all the time, you might get a clunker of a doctor. Don't, don't don't suffer with it if that happens, right. And it's you know, I have a note here to myself, that children get treated better than adults do in medical situations. And it's because in my mind, it's a business. And if and if I see you treating my kid poorly, I don't want to come back here. So everyone's very nice and accommodating. It's how kids get treated adults, do not get treated that way. And by the way, if you are if your husband's a doctor, or your wife's a doctor, or you're a nurse, even if you're like you know, an OB nurse and know nothing about diabetes, your doctor is going to assume you know all about it. Yeah, and not tell you anything, because you're gonna think other nurse they know. And we know that's not true, too. So,

Jennifer Smith, CDE 23:55
in fact, in hiring my own Endo, or endos, you know, in over the past years as an adult on my own. I think since I've been in the profession of diabetes education. I've had more doctors who seem they seem almost standoffish, kind of scared to suggest and or talk about things. I'm usually the one to bring up the questions or hey, look at this. I'm thinking about this. What do you think about this? And I don't, I don't want that I'm paying you to help me. I don't want you just so you can write my prescriptions for

Scott Benner 24:36
me, I still need help with just a guy with a podcast. And every once in a while I get that I get the like, Well, what do you think I'm like, you saw what I think like that's the best I can do. What do you think? I'd love to hear what you think? Let's collaborate a little bit. It's it's not undoable. And I would I'd want to I'd want to finish this up by saying that I've interviewed you Dozens of people diagnosed in their 30s or 40s, their 50s and their 60s. And they're doing well. It's so possible to do. I would. I mean, listen, I'm biased. I'd find Juicebox Podcast type one diabetes, the private Facebook group and just lurk around and watch people talk. You can learn a lot that way. If you have a question great, if not just sit back and watch. And the Pro Tip series from the podcast that begins at Episode 210, with an episode called newly diagnosed or starting over, I think if you listen to the Pro Tip series that Jenny and I put together, it's absolutely free. I think you could get your a onesie into the sixes pretty comfortably. If you need any help find me and ask and I will absolutely ask. And if you're really, really lost, Jenny works at a place called Integrated diabetes, and it's at integrated diabetes.com. So you could

Jennifer Smith, CDE 25:48
thanks yeah, I was actually going to bring in the the fact that you've got a really wonderful list of endocrinologists. And I think there are even some diabetes educators within the list on the website on your website, right?

Scott Benner 26:01
juicebox, Doc's dot com.com Voc acids a list. It's curated by the people who listen to the podcast, who say that my doctor is cool with how I manage. I manage through, you know what I've heard on the podcast and you know, so other people can find them

Jennifer Smith, CDE 26:19
and you have some pretty good connections in a good majority of the states and bigger cities

Scott Benner 26:24
is getting bigger and bigger. It's not. It's not not worth your time to go check it out. You might find something near you for sure. Yeah. Okay. All right, Eddie, thank you so much. Thank you real quick when you get a dog.

Jennifer Smith, CDE 26:35
Oh, we've had a dog a long time.

Scott Benner 26:36
I know. I thought you have cats. Oh,

Jennifer Smith, CDE 26:39
well, we have a zoo. We have two kids. We've got a chocolate lab who's like 85 pounds. We've got two fish. We got two cats.

Scott Benner 26:48
I'm still recording, by the way, but I did not know your dog.

Jennifer Smith, CDE 26:51
Oh, yes. We've got more hair like floating around.

Scott Benner 26:56
That dog bark and I went, What the hell is Jenny dog sitting? I've never heard a dog barking all the time. I've talked to you.

Jennifer Smith, CDE 27:03
I know. Usually. In fact, I've heard your dog's bark before. And I'm I am surprised that in all the years he has not ever bar

Scott Benner 27:13
I swear to you, I thought you were dog sitting with that happen. I was like, although true.

Jennifer Smith, CDE 27:18
We often we most often do these more in the morning. And usually if we're getting deliveries, which I expect, probably something came and somebody knocked on the door, they usually come in the afternoon. So that could be why today

Scott Benner 27:33
you and I almost never do this in the afternoon, actually, that ever is the big deal. Sorry. Well, it's it's a holiday weekend. So I hope you have a great time. Thank you. New episodes of the bulk beginning series will come out every Friday. Thank you so much to Ian Penn from Medtronic diabetes, for sponsoring this episode of The Juicebox Podcast. Please remember to head over to in pen today.com. If you'd like to learn more about that insulin pen that talks to that app through Bluetooth. I'd like to remind you again about touched by type one, it's touched by type one.org. Of course, Jenny Smith works at integrated diabetes.com and bold beginnings episodes. And all of the episodes of The Juicebox Podcast are available at juicebox podcast.com. And in any one of your favorite audio apps, like Apple podcasts, Amazon, Music, Spotify, and stuff like that. If you need a list of apps that are free to use, by the way, I also have those at juicebox podcast.com, where you can head over to the private Facebook page for the Juicebox Podcast. It's called Juicebox Podcast type one diabetes. There are links there to all the series, tons of questions and answers from people living with diabetes, and links to audio players. If you're enjoying the podcast, please hit subscribe or follow in whatever audio player you're using right now. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.