Scott Benner 3/12/24 Scott Benner 3/12/24

#1150 Noki Pokey

Faygie is 45 and her son Daniel was diagnosed with T1D 2 years ago when he was 10. Celiac, thyroid issues and Crohn’s disease are all medical conditions that run in her family. Faygie herself has MS.

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Scott Benner 0:00
Hello friends, welcome to episode 1150 of the Juicebox Podcast.

vagy is 45 years old and her son Daniel was diagnosed with type one diabetes about two years ago when he was 10. There celiac thyroid issues including Hashimotos and Crohn's disease in their family vagy actually has MS and was diagnosed with it two years ago at the same time as her son began with his type one journey. Please don't forget 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. Do you have type one diabetes or are you the caregiver of someone with type one? If you've answered yes to that and you're a US citizen, please go to T one D exchange.org/juice. Box and complete the survey. This will take you less than 10 minutes and you will be helping people living with type one diabetes, you'll likely help yourself and you're definitely going to be supporting the show. T one D exchange.org/juice box. When you place your first order for ag one with my link you'll get five free travel packs and a free year supply of vitamin D drink ag one.com/juice box

this episode of The Juicebox Podcast is sponsored by cozy earth.com Cozy Earth is where I get my clothing, linens and towels from they are incredibly comfortable and temperate. I love them. I really do love them. And I love that I can give you an offer code that will save you 40% off of your entire order. Just use the offer code juice box at checkout and you will save 40% at cosy earth.com Today's episode of The Juicebox Podcast is sponsored by Dexcom makers of the Dexcom G seven and G six continuous glucose monitoring systems. dexcom.com/juicebox us med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years, you can as well. Us med.com/juice box are called 888-721-1514. Use the link or the number get your free benefits check it get started today with us med. Hi,

Faygie 2:38
my name is Shay ghee and my son Daniel was diagnosed with diabetes about two years ago after coming home from camp.

Scott Benner 2:46
How old is Daniel now? He's 12. It was 12. So it was diagnosed around 10. And Biggie are there other autoimmune issues in your family?

Faygie 2:59
Yes. A lot. And listening to your podcast has made me realize that connections. We have celiac we have thyroid issues including Hashimotos. We have I have MS. Actually. Husband has Crohn's disease. So we have a lot of them.

Scott Benner 3:18
Well, how about going past you and your husband? Down family lines? Do you see more?

Faygie 3:24
With cousins and and my relatives spread out? We see the celiac and the thyroid things. Not really anything else? And there's no other diabetes?

Scott Benner 3:37
No other diabetes. Okay. So Daniel's The first type one? Yeah. How did it present? It

Faygie 3:44
was kind of crazy. So basically, when I got diagnosed with MS, I had like a big, whatever you call it flare up and had a lot of crazy symptoms. And I'm in the hospital. They're trying to figure out what's going on. So Daniel was supposed to go to summer camp for like four weeks, it was his first time going away. And it was like right after COVID Only some camps were open, and I wasn't feeling well. And we were like, Let's just send him away. So he ended up going and having a great time and the camp called me and basically said we know like you're not feeling well let him stay the second month like it's fine. He's having a great time. He wants to stay we'll give you a great deal. Like, and I even though I was really nervous. I said okay. And some point in camp, things started to go south, but like, I wasn't there. So I didn't realize, you know, they called me to say that he had wet the bed and I thought it was so strange. And I'm like, that's weird. And everyone was like, Oh, he's under so much stress because you're sick. Like, it's probably because of that. And then they said he was vomiting. They didn't pick up on it which whatever is really upsetting. Okay,

Scott Benner 4:50
well so let me ask a question your How does your MS diagnosis present? Like what happened to you to put you in that situation?

Faygie 4:57
So like About a year prior to my actual diagnosis, I had like a weird, a headache with weird visual changes in one eye. And that ended up with the doctors saying they did an MRI that they're watching for Ms. Right now it doesn't look like Ms. But they're watching. It may turn into Ms. And then about a year later, I had a full on episode half of my face was numb. My tastes was affected. The hearing on one side was affected. Several vision for like, an hour after I woke up in the morning. No balance, like I couldn't get up walk. So it was pretty intense. Wow.

Scott Benner 5:39
That's crazy. How old were you when that happened?

Faygie 5:41
It was about two years ago. So 43.

Scott Benner 5:46
Okay. Anyone else in the family have that? No. No? Ms is all new immune. Correct? Yes,

Faygie 5:54
it is. Yeah, your body is attacking the nerves. Wow.

Scott Benner 5:59
Okay. I'm gonna ask a question. It's just a shot in the dark. If I'm wrong, I'm wrong. If I'm right, I am but your first name. Your Jewish right.

Faygie 6:07
Yep, yeah.

Scott Benner 6:09
Are you orthodox? Orthodox? Jewish? Yes. Okay, I'm getting this quickly. Don't worry. Yeah, I see what's happening. Have you and I met? No,

Faygie 6:18
I am on the Facebook group. Actually, my nickname Fe Chang. That's whatever. It's a long story. But I'm on your Facebook group. And we've had some, you know, back and forth, but now he's never met. Okay.

Scott Benner 6:30
I just I did a big orthodox event last year. So I wasn't certain If we met at it or not. I

Faygie 6:35
know about that event, actually. And I was I saw on a chat afterwards. They loved you. Oh,

Scott Benner 6:42
good. Oh, I'm glad I actually thought I'm like, I'll never know. And they, they have that? Yeah, like the like a whatsapp chat or something like that. They hate me. They'll just talk about me incessantly in there. And I'll never know.

Faygie 6:56
What happened was was, I had just joined that chat. A lot of it. A lot of them are actually Hasidic, I'm not Hasidic, and I don't speak Yiddish, and they speak English. My family's very American. But I joined that chat. And then I saw you post this cryptic thing on the Facebook group like that said, I'm going to an event where like, people won't be able to something about won't be able to communicate with me after or won't be on the Facebook group. And I want to, I want, please send me like some information. I don't know when I said to my husband, oh, my God, he's gonna go to that event. I want to go.

Unknown Speaker 7:30
Well, then I

Faygie 7:31
found out you were going but it was only for adults with diabetes. It was not for kids. So I couldn't go.

Scott Benner 7:39
That's well, first of all, it was a it was a great time. There were only 400 people there. It was a huge, huge. Yeah. Wow. But yeah, they didn't. The group asked me not to publicize their event. But I had like a couple of questions. I was like, I don't know how to do this. And this. And anyway, I learned a lot that weekend, I'm sure. But the reason I asked is because your social circles can be smaller than and so that when you start meeting people with autoimmune, like you might start marrying people with autoimmune and getting born autoimmune. And that's that's what I was wondering.

Faygie 8:13
Yes, you know, there's actually it's not auto immune, but there's a genetic disease that Orthodox Jews actually from European descent test for before they even date or marry because it was running, like you said, it was like, people kind of marrying and like the same circles. And it became a concern. Yeah,

Scott Benner 8:35
no kidding. Oh, that's fascinating. Yeah. Yeah. Do you know did that help them to get ahead of the problem when they started doing absolutely,

Faygie 8:42
people, everyone, basically, everyone in those circles will test them. People will not get married if they're both carriers, because it's a devastating, early death, like disease. Yeah,

Scott Benner 8:54
I'm now envisioning, like a dating system was swiping where you get a blood test first. And it eliminates people who will put you in these situations, but nobody's actually no one. No one takes that idea. That's mine copyright.

Faygie 9:13
So my husband is Iraqi so I don't have the same. His dad was born in Baghdad, so he doesn't have those European genes. Even Crohn's disease is very rare among people and from his where he comes from, it's weird that yes, I

Scott Benner 9:28
say, oh, that's something else. Okay. The Dexcom g7 is sponsoring this episode of The Juicebox Podcast and it features a lightning fast 30 minute warmup time. That's right from the time you put on the Dexcom g7 Till the time you're getting readings, 30 minutes. That's pretty great. It also has a 12 hour grace period, so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable and light. These things in my opinion, make the Dexcom g7. A note brainer. The Dexcom G seven comes with way more than just this. Up to 10. People can follow you, you can use it with type one, type two, or gestational diabetes, it's covered by all sorts of insurances. And this might be the best part, it might be the best part alerts and alarms that are customizable, so that you can be alerted at the levels that makes sense to you. dexcom.com/juicebox links in the show notes links at juicebox podcast.com, to Dexcom. And all the sponsors, when you use my links, you're supporting the production of the podcast, and helping to keep it free and plentiful. sitting here right now it's late at night, according ads, and I'm wearing the most comfortable joggers I've ever touched in my life. They're from cozy Earth. And if you use my link in the show notes, everything you see at cozy earth.com will automatically be 40% off. Or you can go to cozy earth.com. Pick whatever you want. And then at checkout, use the offer code juicebox. And again, you will save 40% off of everything in your cart. Cozy, earth.com. Comfortable, and quality. Those are the words that come to mind when I think about my cozy Earth towels, sheets, and clothing. Cozy earth.com use the offer code juice box at checkout to live the life of luxury, or use the link in the show notes and see what all the prices look like with the 40% already off cosy earth.com Alright, so you're getting Ms. I'm sorry, that doesn't that sounds good. And there, it's a stressful thing for the family in general. So people are believing that like your son's just not well, because he's not handling that. Well. I

Faygie 11:47
mean, at first that's what people thought, you know, and the nurses I can I kind of I wasn't, you know, I wish that the nurse would have just done a simple blood test. What happens in the end was I was getting more and more nervous. I almost wanted to pick him up because he was vomiting and like, he was Scott, he was really sick. I didn't know. I told my husband, I'm coming with you to the bus stop to pick him up. So we get there. And he gets off the bus and I didn't recognize him. He had lost like 25 pounds. He was breathing strange. He was completely confused. He didn't say Hey, Mom, how are you? He's like, I think my backpack is still on the bus. Immediately. I knew something was really wrong. And I brought him to the car sets. My husband set the GPS for go straight to the doctor.

Scott Benner 12:38
How long have you been gone? Had he been gone? Eight weeks. Eight weeks? He lost 25 pounds? Yeah. Oh, wow. So he's in? He's in decay when he gets off the bus? Severe? Yeah.

Faygie 12:50
I mean, he was breathing that breathing that you talked about that deep breath kind of situation.

Scott Benner 12:56
Cool. Small respiration? Yes, yes. Okay. So

Faygie 13:01
then it became a complete nightmare. Because I said, if we start driving to the doctor, my husband's like, Oh, he's probably just not feeling well, let's take him home. He still is like terrified that he almost like tried to convince me to bring him home. And the doctor didn't want to take him. One of the doctors was out on emergency and they said they have no space. And they sent me to like this. I don't know, walk in type of situation. Emergency. And I was still like, COVID I went there. And the lady told me three hour wait, and I said can you please triage him? He's not breathing, right? No one would listen to me. So finally I called someone in my family. I was hysterical, like screaming on the phone. Something is wrong with my kid. And no one wants to see them. I think I'm gonna go to the hospital. But I don't know if that's the right thing to do. And like, finally, I don't know, my brother in law just said to me go to the doctor and just walk in. So that's what I did. And the nurse said, you know, he said he had to pee, you know, let him pee in a cup. And then of course, within minutes, the doctor came in and said to me, you need to go straight to the hospital. Yeah. It's

Scott Benner 14:06
it. It's interesting, actually, that Yeah. Give me a second that in most doctors offices. The first person you speak to is often not a medical person.

Faygie 14:16
Yes, she was a receptionist. Yeah, yeah. It's interesting.

Scott Benner 14:19
So you would think that I don't know like, I like your I like your brother in law's idea. Like just show up the look at him and go, Oh, my God help him in a good idea.

Faygie 14:28
And my doctor's office. I've never had issues like this. And it was really upsetting. And actually, the main doctor gave me his cell phone number and said to me if anything ever happens like this again, call my cell phone. This is ridiculous. Like, okay, well, because they didn't want to see him. They were fighting with me, which is crazy. Yeah.

Scott Benner 14:46
You also know when people are really upset. They're either really in trouble or crazy. And so

Faygie 14:52
my doctor's office knows me and although it can be a little crazy, I am not the person that calls them every five seconds. This happened my kid, I have like six kids, thank God, you know, and I, I don't run in for every little thing. So if I'm calling you they should know, if I'm calling you hysterical, something's really wrong.

Scott Benner 15:12
I take your point, I really do. Okay, so he gets in there, they dip his urine. And we

Faygie 15:17
started driving to the hospital because it was only six minutes away. And my doctor of disaster actually pulled me and said, pull over and call an ambulance. They're busy and he needs immediate care. And Scott, he was passing out while I was waiting for the ambulance on his side of the road. I'm standing outside my car, and I'm banging on the window trying to like wake him up because he was literally He was passing out. So they in the ambulance, they you know, they took him to where we're near li che and they were amazing. But it was so scary. It was like a movie because they didn't stop moving. They wheeled him in, they didn't even stop. And three nurses were on him trying to get IVs and like three different places. Whatever, thank God, they told me we know what this is, and we know how to treat it. But they didn't say oh, he's gonna be fine. I mean, he was really bad. It was very scary. Yeah.

Scott Benner 16:06
Yeah. It's anybody who's ever been in like an emergency medical situation, they they will often give you reassurance and when when they don't offer the reassurance. It does make you think like, oh, wow, like, they didn't take the time to say don't worry, this will be alright. And right. Yeah. And plus, I'm assuming you were standing on the road, waiting to wave down an ambulance and at the same time trying to parent the situation. That is what was going on. Right? Yeah.

Faygie 16:35
Right. And unfortunately, my younger son was in the car. So he was six. And he's a very anxious kid, and he is watching all this play out. And there's nothing I can do about it. I'm saying, he hears me screaming at the doctors and he watches us get into an ambulance. You know, my husband drove him home. I went to the hospital with my other son. Like, it wasn't good for him, either.

Scott Benner 16:58
Yeah, I was gonna say that didn't help him that day, stare at the wall, like, covering.

Faygie 17:03
It comes home. And he needs shots every second and he's like, Oh, my God, that's a thing. You can like, go to the hospital and then come home and you need a shot every five minutes.

Scott Benner 17:14
How's he doing now? The six year old.

Faygie 17:17
He's eight now. And he's he's got a GED. And he's, he's adorable. He's very helpful to his brother. And he loves to kind of be involved. He could probably talk diabetes, talk to you about diabetes, he could talk circles around anyone he knows everything. Right?

Scott Benner 17:32
Well, I'm hoping he doesn't have too many bad memories from this. Well, I'm interested in the progression from like, disoriented to passing out to when he comes back around. How long does that take?

Faygie 17:44
I mean, we were in the intensive care unit for five days. His his potassium was off his heart there was like, I think God, His heart is fine now. But there was it was a lot. It was so involved. He did wake up, I would say, a few hours later. And I said to the nurses, like, Please don't tell him right away. What's going on? Let him get a little stronger. Let him get. And they one of them was like No Mom, he has to know he's gonna deal with this for life. And I'm thinking okay, I know. But he needs like an hour two, you know? So yeah, I mean, he handled it like a pro. He's got a great attitude. He's an amazing kid. He was comforting me in the hospital, because I stayed with him and I wasn't feeling so well. And he's like, singing to me and trying to make me feel bad. That's

Scott Benner 18:35
very nice. I would not have done that. I would have been like, Hey, I don't know if he just saw it happen to me, but it's my day.

Faygie 18:46
No, it was it was mostly all his day. But there were times when he saw that. You know, he was noticed he noticed that it was hard for me. Wow. He's an awesome kid.

Scott Benner 18:56
That's excellent. So did they start him with any technology? I mean, does he leave on shots or pens that they talk to you about CGM EMS. I used to hate ordering my daughter's diabetes supplies, and never had a good experience. And it was frustrating. But it hasn't been that way for a while actually for about three years now. Because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash. The number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. They always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps and diabetes testing supplies to the latest seeds ATMs like the libre three and Dexcom G seven. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do.

Faygie 20:27
So we got some pretty good education in the hospital for like, you know, first level type of stuff. He left with pens. It was very overwhelming when they tried to explain the math to me. I was almost hysterical. It's too much to handle when you're like dealing with all this. And you know, I made my mom's day and listen, they're telling me add up this divide by this. It was like very overwhelming. We went home with pens. We actually went home for one night and then went on a family vacation kind of like where we are now. With extended family. Yes. The doctor said you take the insulin, you take food like you're gonna be good you take the blood, you know the bloods has blood glucose tasket there's no reason why you need to be home. So he had a ton of support the family like rallied around them they they sang a song because we call him Nokia's, his nickname. They said do the gnocchi pokey every time he like stuck his finger. And like he got he had a lot of support. But we were doing we were waking up in the night. We were very high running high correcting calling the doctor every few hours.

Scott Benner 21:34
In hindsight he led you went Yes. Okay. Does the No Keep turning around? That was my other question.

Faygie 21:44
He was dancing. But I mean, it, I think started the foundation of a very healthy acceptance of his disease and like ability to laugh at it. And I think it's the attitude is so important for a kid dealing with it. He doesn't hide it. And he got you know, he got the validation from everyone. And my brother who's an actuary did all the math in his head for me, it was great.

Scott Benner 22:09
I have to tell you, the math is what freaks me out because I really did relate to what you were saying. Like, you don't recognize that you're not doing well, in a crisis. You don't I mean, like you think because you're standing up and listening and not crying that you're doing okay. But that's not true. Like you really are in a you're in a city. I mean, I've always said like, it feels like somebody just whacked in the head with a shovel and then starts asking you questions, right? Yeah. And then when someone you know, starts talking to you about math, at least for me. I was like, wait, what? This sounds reasonably easy, but I can't follow. I don't know what's happening right now. Yeah. So right. You're in like a fog. Oh, my God. And I've been thinking a lot about this lately, because we're going to make a series that's for health care providers. Yes. I asked you to do that. Yay. Jenny and I are doing that. So we're in the planning stage stages, right now. It's hard, because there's like the hospital, right. And then there's people's opinions like that nurse saying to you, like he needs to know, but you were just saying like, give him like 45 minutes before you tell him and like and now she's got her own personal beliefs that are here and and they're kind of pushing them and you're asking your thing. And you need to learn about this because you're going to go home, but obviously the hospital is not a great place to learn these things. So what should the process be? And what should people know along the way? What should emergency staff know? How quickly should you get to another doctor? Like, you know, if you can't get to a doctor, is there a way to train you online? Like, that's the stuff we've been thinking a lot about. So it's interesting.

Faygie 23:43
Oh, yeah. Yeah. Online training with from you sounds great.

Scott Benner 23:48
Well, I will say that Jenny and I are gonna, we're figuring it out right now. But anyway. So you guys are on vacation. Everybody rallies around them. He's doing well. He's got a good attitude. You get back home. What happens? Is it when do you when do you realize you don't know enough? Do you go to another appointment? How does that work? So

Faygie 24:09
we got we got a CGM fairly quickly within maybe like four weeks or so the doctor really wanted, you know, wanted it right away. I didn't even understand all the benefits. They just told me, Oh, you won't have to prick his finger. You won't have to wake up and mill the night. They didn't tell me anything about the arrows. You know, they got him on a Dexcom was the GSX. And they told me about the pumps. And he was very interested in waiting for the Omnipod five. But, you know, they kept pushing off the date pushing off the date. And finally, we said okay, let's just get him on the T slim. It was his choice. And he you know, we wanted an algorithm pump. Yeah, we thought it was amazing. It was explained to me, by the way, as if I would not have to interact with it. Like, oh, it's just gonna, you know, correct him when he needs it. And it's just gonna I was not given the proper training really for the T

Scott Benner 25:03
slot. They gave you that feeling of like, oh, you're getting the pump. It'll take care of everything. touch and go. Yep. That's a shame that from what office like Who told you that? Yeah. So

Faygie 25:15
chronologie office? Yeah. Yeah.

Scott Benner 25:18
Again, words are very important. If you use them in the correct order and use the correct words, and yeah, it's just one person, slight misunderstanding that they don't recognize will send you in a direction. And they have such power over you in the beginning. Because you're listening. And you're taking everything as gospel like everything. They say, you're like, Well, this is this. This is an automatic pump. Great. I won't have to do that. Who even knew that existed? This is wonderful. Like it's

Faygie 25:48
right. Yeah. Right. And I'm a person that really does dig into things. And I try to find out things for myself that I really thought the doctor was giving me everything I needed. I had no idea what was out there. No idea. And I'm not even a Facebook person. I mean, now I'm on your group. I joined Facebook just for you.

Scott Benner 26:07
I've got a couple of people like that. I've dragged into Facebook, by the way, I'm one of them. wasn't exactly using Facebook a lot either before all this, but but anyway. Okay. All right. So you get the algorithm. The T slim, right. And yeah, well, let's break it down first. How did you like the CGM? So the

Faygie 26:28
CGM was amazing. It's definitely helped. But it also made me realize that like, like, we suck at this, like, we're not like getting, he was high. He was like, high a lot. And I didn't, they did not allow me to ever give correctly was like the three hour rule with the corrections. I had no idea that like, I could be adjusting settings myself or, you know, changing numbers or anything like that. I found your podcast while I was on the tea slum. And my husband had he one of his students, parents had diabetes. He's a teacher as a science teacher. And they told him about the podcast. I really just like, out of curiosity, like, I know how to do all this already. Like I really thought I knew everything.

Scott Benner 27:14
So that was that? How do you find the podcast is just searching online? No, she

Faygie 27:18
told one of my husband students parent one, okay, I'm sorry, can she liked was that parent teacher conference. And in her five minutes, she said, I heard your son got diagnosed. This podcast Juicebox Podcast, tell your wife like it's amazing. So I think the first episode I heard with my husband, we were in the car was a woman from India, whose daughter has diabetes. And she was talking about how it was so hard to get the right equipment and how no one understood. Type one in India, it wasn't very, you know, but there were like a few things thrown in here and there that gave me pause. And then I was listening to one of your episodes, and I heard you say something about art in like, 120. You're correcting and I was completely shocked. Oh, I think I listened to that part. Like four times. I said, Wait, what? Everybody listens to being sarcastic now, like,

Scott Benner 28:11
am I not hearing sarcasm, which would be crazy, because of your background, you should definitely be able to hear sarcasm, and maybe I misunderstood? Yeah. I think that it's a great example, again, of like, whatever they tell you in the beginning, you're like, Okay, this is it, you know, don't correct. high numbers. All right, we won't. And you know, that's a loan could lead you on a lifetime of problems. And I don't want to I just don't understand what I don't understand as I go through. Because, you know, to make this series that I was talking about, what we did was we went online and ask people like, what do you wish your doctor would have told you? And we got back like 85, like in a document 85 pages of information from people. And so we pored through it took out duplicates, you know, put them into, you know, under headers and sections and, and what you overwhelmingly take away is that whatever I was told first, I believed, and that was a rule to me. And that leads you down a path you don't come back from because you never question it again. Does that make sense? Yeah, yes. And so you're getting this information either from well meaning people with strong personalities like you gotta tell him now because he's got to live with this for his whole life. Like, I'll just and that person by the way, that's not a bad, like statement. It just, they just misunderstood what you were saying in that moment. And then they have their own dogma that they're attached to and so now, they're pushing you in that direction. And it's just, it's so anyway, so all these people's like, information comes back. What did they want? My wish, what I wish would have happened. And along the way you intersect so many different doctors who are just kind of talking. They don't like you know, the person in the emergency room, it tells you the barebone stuff that they think you need to know. But nobody ever finishes sentences. And I think that's the takeaway is you, you say to somebody, instead of saying, Look, these are your Basal rates, and this is your correction factor. You say, today, based on weight, you know, whatever else, we're going to make your settings this, but these settings are going to change for a number of reasons moving forward. reasons like activity, weight, age hormones, like, if you just knew that, you'd say, Okay, well, these are today's settings, they're going to change. But instead, you say, these are the settings. And then when you move forward and start seeing high blood sugars, you never question the settings again, because somebody told me Yeah, and that I think, is the core problem.

Faygie 31:01
Just knowing that it would be flexible, would would change your whole outlook and make you more flexible. Oh, this might change like, right? You're assuming that everyone knows, Si, I have a theory that a lot of people who deal with diabetes don't even know a third of what you know. Yeah.

Scott Benner 31:22
And they might be, I wasn't agreeing to say that I know a lot. But they might be they might. They might be saying what they believe. And maybe they don't know what's going to change. So we should teach them just to add on to the rest of the sentence. And by the way, this is going to change moving forward. Or, you know, this is not the only insulin, if you're not having luck with it, talk to your doctor about other insolence. You know, this, maybe you'll get an insulin pump one day, there are many different kinds. I don't know about them, you should look into them. Like the rest of the sentence is the problem, right? Yeah. So there's nobody, we've,

Faygie 31:57
we've had a diabetes educator, nurse or whatever, tell my son, like when I'm asking why he's going high after this. And this meal? How much protein did he have? Oh, that's too much protein. Like, tell me that you can dose for protein, tell me that there's a way to dose for fat. Don't tell me that's too much protein. He just can't eat that. Like, what does that even mean? Like? Those were the kinds of things I was cutting. And honestly. It was, I honestly want at one point, when I asked the doctor, the endocrinologist, I said something about dosing for the arrows. I was starting to learn from the podcast, and I was, and she looks at me like I had three heads. I don't know if she knows that. Dexcom has arrows. How are you? And Endocrinol? Like, I don't know,

Scott Benner 32:41
the error is what error is, what are we talking about? She gave

Faygie 32:45
me that look like I'm crazy. Okay,

Scott Benner 32:48
now, I finally have someone to talk about this with. So let's divert for a second. When I, when I gave the talk at the Orthodox event, by just the luck of the draw. I got to be the sharpest boy for somebody. And I was excited. And so, so this great thing happened for me, not for everybody else. But at sundown, the elevator became my private elevator. Nobody else was nobody else would get into it anymore. So I had a private elevator for that. But I was standing at the elevator at the end of an evening, waiting for the car. And there were a bunch of people at the stairwell getting ready to go up the stairs. And, you know, I looked at them, and I smiled because what I was really thinking was oh, I'm so sorry that you can't use the elevator, but I'm gonna get into it anyway. And these two people who are not together, a woman and a kid in a stroller and a guy, an older guy, I don't know, mid 20s they start talking to each other. But in Yiddish, and I'm like, this is probably about me, but that's okay. So I just

Faygie 34:01
I don't actually speak it. Yeah, don't worry.

Scott Benner 34:03
That's not the point of the story. And then in English, she goes, he doesn't know. And I went, I might know. So he turns to me, by the way, I was right. They were talking about me. And he turns to me, and he goes, Can you are you on the sixth floor? And I said, I am and he goes, Can you help me? And I went, do you need me to shut off lights? And they laughed a little. And he goes to her he knows and I was like Chava school? And they start laughing? As the guy goes, How do you know when I went Howard Stern that got more laughing and and he gave me his his his room number. I was waiting at the door. I was so excited. And and so then it was just very interesting. It was only 30 seconds but it was very, very interesting that first of all, I came in the room he first checked to make sure his wife was decent. She's in bed like under pillows and blankets trying to sleep. But she can't because every light room is on and, and I come in, and he this is the part I didn't quite understand but it felt like he couldn't directly asked me to shut the lights off.

Faygie 35:16
Yes, yes, that's correct. Okay. Okay. And so

Scott Benner 35:20
like I just walk into the room, make the assumption. And I'm like reaching for a light and waiting for like, I think this one's okay. And I push the button it went off and this voice comes out from under the blankets and it's, it's an exhausted voice. And she just goes, thank you so, so now the rooms dark except for the bathroom light. And as I'm walking past the bathroom to the door, I kind of like look at it like this one too. And he sort of looks at me like, and I thought, oh, they'll shut the door, and then they'll have access to the light overnight. I was like, Okay, I got it. Anyway, I walked out of that room, I felt like I was at Disneyland I was so it was like texting my wife. I'm going on the home like oh my god, guess what I just got to do. Anyway, you actually

Faygie 36:15
right? You're you're supposed to only hints to someone like say, oh, it's really late in here. But we can turn off the

Scott Benner 36:21
I had such a good time that we can because I have like, I have enough Yiddish phrases, again, from listening to Howard Stern for my whole life that I saw that I was like whipping them out. And people were very impressed. Like me. We were I was giving a talk. Oh my gosh, what happened at that talk? Somebody used a phrase. Eating my kiss goes out. Oh, no, wait, they were eating something called a Kiska? That's right. Yeah. And I tried to imagine like, there's 200 people in the room because everyone's split up men and women for for dinner. And I was giving a talk that night in the in the lady side. And so it was kind of interesting and a little weird, if I'm gonna tell you like we were up on a riser. So I was like, I was at my own wedding. And everybody was down on the floor, and I was up on the riser. Anyway, they're bringing out food. And every time food came out, they'd come around and tell us what it was, etc. And I and I stopped the person. I was like, Wait, I don't understand this is a KitKat. And she says yes, I'm like, well, then where does the phrase eating your kitchen? Because out come from? And then that turned into like, a whole conversation with the entire room and people are like laughing and you can hear people going, how does he know what that is? And like, you know, it's such a good time. That's awesome. Yeah. Anyway, private elevator was the best part of the weekend. Like, this is just for me. It's waiting on your floor. When you wake up in the morning. Swear to God, it was lovely. Anyway, okay. So I don't know. I just want to tell somebody that story. So today, modern day is only two years since all this happened to Daniel, he sounds like he's doing really well. Yes,

Faygie 38:03
yeah. Your podcast has literally Scott, you're you don't know what you're doing. It's out of control. You're like literally changing the world. It's not normal. I, he he has, you know, obviously I went and listened to a lot of episodes, I listen to the Pro Tip series that was very helpful. And we kind of changed one thing at a time. And I think I told you in my letter, there was a month where he was only 40% in range and range at that point was up to 180. He had he had really hurt his leg. He was in a wheelchair as a whole, whatever. And so he was running super high. And I did a few changes. And the last week, which is part of that average of 40. He was 80% in range. Well, from one week from probably I probably did a Pre-Bolus and you know, correcting I don't remember what it was that we changed but I mean, he went from so he we really we got down to a nice like 6.2 6.1 A one C, we switched to Omnipod five when it came out. And actually a month ago, we started looping. I was fighting with the Omnipod five too much okay, and I didn't like where he was sleeping. He was sleeping. It was okay. It was a nice flatline but it was like at 131 25 and I just couldn't. So we actually, I actually hired Jenny she's been amazing. She helped us switch over to Lou and helped me with the settings and we're getting there I can't say we have the settings completely dialed in. But I can see that the potential is amazing.

Scott Benner 39:38
Oh, that's excellent. Good for you. I am thrilled that the podcast is helpful for you. Actually I just had this will be way later than that. So it doesn't matter if I tell you but I just had the Pro Tip series professionally remastered by an by an audio engineer. And so

Faygie 39:55
you put that up on Facebook yeah Amazing. Yeah,

Scott Benner 40:00
I'm really excited because I went back and realize that in the first like, 15 episodes, Jenny's microphone was not good. And, and a lot of the leveling was off. And I didn't really know what I was doing. But I'm so busy making the podcasts like, I can't, I can't go backwards, you know what I mean? Like, I can't go back to deal with something else. So, spend some money. person did a wonderful job. We're gonna rerelease them at the episode 1000. So that they're all they're all amazing

Faygie 40:27
that series is is really incredible. That series alone can change people I listened to all the episodes, I listened as many as I can. But that one series, I think is like key.

Scott Benner 40:39
I was having, actually, yesterday, I had a meeting with an advertiser, and I'm basically I was selling ads on the, the remastered purchase series. And so I'm on the, on the call. And I said to this person, I'm just gonna say this, I was like, I can't make this claim anywhere. Like, for real, I'm like, but I believe you listen to the Pro Tip series, if you understand it reasonably, you're gonna get an A one C between like six and six and a half. And I said, that I think if you really understand it, and want to put in the time, I think you get a one C and the high fives, mid high fives. Yeah, just with what's in there.

Faygie 41:15
We got to 5.9 My son was like dancing in the gym, right? But then I then our last one was like, 6.2, we were you know, we're gonna have to, I think with looping, we're gonna it's gonna take us a little longer, because you really have to adjust the settings yourself. It doesn't. It's not a smart system, it's not going to like, you know, figure out your Basal or, you know,

Scott Benner 41:40
no, no, of course, we're not up to that yet. I mean, I even think like Omnipod, five, for example, T slim all these things. I think that as time goes forward, you should see them. I mean, if I was running those companies, I think you should see them kind of turn the screws a little bit on the algorithm and make them more and more, you know, like customizable, that kind of stuff. Yes, yeah. Because right now, you know, for someone like me, who's I mean, Arden's been looping for years at this point. And so we're just sort of ahead of the curve a little bit like and write it all, it'll all catch up. I like the way they started it to be perfectly honest. Because if you think about the world, in general, you can't just drop a device on everybody that shooting for like a thought that they can shoot for a five, five and a half a one C, because people don't get low constantly. They're not going to know what they're doing. Like, you're gonna have to teach the populace how to do this. And then and move forward. I think so.

Faygie 42:40
Now, the fact that there are systems that you can kind of slap on and you don't have to be that you'll get a decent a one C better than for these devices. Yeah. Oh, it's knowing that much is amazing for most people. I

Scott Benner 42:55
mean, listen, if we can somehow put this in the ear of every person living with diabetes, not just the people who listen to a podcast are out searching for, you know, better ways. And you told them, This is Omni pod five, were it, you'll be 130 110 overnight, stable, they'd run they'd be like, Oh, my God, how? Like, please. Right. Yeah, you know, so I think we can get a little confused. Sometimes, at least I try very hard not to thinking that the people who find the podcast are very motivated. They're people who are out there looking, you know what I mean? And so you end up finding people who are similarly mindset it about like outcomes, or their desires for their diabetes. That's not most people. Most people have the story you have or the story someone else has, where they get bad information in the front. Their blood sugars are high all the time. And they live their whole life like that. Right? Yeah, right. Yeah. Anyway, I didn't want to get fascinating.

Faygie 43:51
I actually, I, I might, right now I'm occupational therapist, but I really do want to maybe train to be a diabetes educator. I have a lot to learn. But I would, I'm very interested in it very interested. It's fascinating. It's excellent. Good for you. I see how you could help people. People call me all the time, you know, people who are newly diagnosed kid or something, and I'll talk to parents and like I, you know, I find like, information is so valuable. Like it just you could really change someone's life. Yeah,

Scott Benner 44:22
no, I agree. I think it's wonderful. I hope you do that hope everybody, like helps somebody. Because that's, that's what's gonna spread the information more quickly. I can't do it. Like as much impact as I'm having. It's not that much. Like in the grand scheme of things. I mean, if you know, everybody with diabetes, heard just the Pro Tip series. I mean, this podcast would be bigger than, you know, Joe Rogan. So like, you know,

Faygie 44:47
I think that, that in like 20 years, you're going to realize people are going to look back and realize that you actually tipped the world in terms of diabetes. You're doing something no What else is doing? It's not it's not normal.

Scott Benner 45:02
Thank you. Should I ask for a statute that when that happens, I'll probably be dead. Don't you think? Like,

Faygie 45:10
I hope you're not dead.

Scott Benner 45:13
The world will like understood what happened. And I and they'll come to tell me. And like whoever answers quarterback guy you just thought you were calling to tell them why oh, he would have loved to have known that. No, no, he left about six hours ago you left? Well, you're very nice to say that. I don't know if that's true or not. I can just tell you that. I think through maybe a confluence of, you know, the where technology is being able to podcast, getting in the situation where I learned what I learned. And I practice talking about a lot of blog, so I'm probably good at explaining it. I think it all just sort of came together. Meeting Jenny is such a big deal. You know, because you just think without Jenny, the Pro Tip series is just me pontificating about things. And maybe that even wouldn't have been okay, like maybe the style would have not been right or, like it kind of helps that Jenny and I seem like two such incredibly different people. But if you really listen, we really agree about diabetes.

Faygie 46:16
I don't know how you found Jenny. Yeah, you you think exactly like a

Scott Benner 46:20
wonderful person named Ginger. Ian introduced me to her another person in the diabetes community. She just said, I think you would really like Jenny. And so had me on the show once as a guest. Back in the one hundreds maybe. And oh, wow. Yeah, loved her, brought her back, like a year later, because I just was like, Oh, I really love talking to her, I should put her back on the podcast. And then as the podcast started approaching 200 episodes, I found it unreasonable to say to people, if you listen to the podcast, you know, I think you're able to see all blah, blah, blah, there's information inside of it. You'll you'll call it out and put it together. And I was like, why don't I just take all that stuff and put it together in a series? I'll call it like, diabetes pro tip. And oh, what if I had Jenny? On with me? That's pretty much how it went. Right? Yeah. And then we just got on. It's all that entire series is freestyle. So

Faygie 47:18
meaning, right, yeah. You guys didn't plan it, right?

Scott Benner 47:20
No, we made a bullet list of ideas, and then took the bullets and made each bullet and episode and sat down and recorded. So I would say, okay, Jenny, today, we're going to talk about Pre-Bolus thing, and then we would just start talking.

Faygie 47:34
So you left some of that ends. So we know, you

Scott Benner 47:37
know that it wasn't planned. We didn't have any notes. Just in case in case you're wondering, like, why did this go astray, hear widely tell a story about an elevator and we're just chatting. Anyway, it's really cool. I'm thrilled that it's helping you and and other people. And it's very nice of you to say thank you. It's been amazing. Yeah. All right. Well, I'm terrific. Let's move forward. What else? What else? Are we not talking about? Is there anything else you want to want to go over? Not

Faygie 48:05
really, I just, I feel like, sometimes being part of the Orthodox community, I feel like people are trying to hide their diabetes, a lot of people for some reason, and I don't know if that's specific to this community, or if it's like, it goes on everywhere. But I find it to be so unhealthy. And so it really, it's, it's even dangerous. My husband found out like, last year that he had students go through his classroom that had diabetes, and he didn't even know no idea. And like, it's so dangerous. And I find it to be like, I think for a child also imagine, like, having to deal with diabetes. And then also feeling like you have to keep that a secret. Like that kind of pressure on a kid is crazy. Like it can make you you know, in addition to being really dangerous, I mean, we know and adults who actually no one knew they had diabetes until they passed out at work. And they called his wife and she's like, he's diabetic, give him sugar, give it like, and it's like that should be that should never ever happen. Like, yeah,

Scott Benner 49:12
I mean, I wouldn't want to give away anybody's confidences and I certainly wouldn't. But I did have that experience where I was with 200 type ones who are Orthodox and their spouses. And it occurred to me that it did look like people were very quiet about it, and people would kind of tell me, like, keep pushing, like, nobody talks about it, like, you know, like that kind of stuff. And at one point during one of my talks, I think I was giving a talk about supporting a spouse with type one. And I just sort of offhandedly said, you know, make sure that you know how to use the glucagon that your spouse has, and hands went up. What is that? No, they were like, yeah, so there were situations spouses had it and weren't even telling their spouse about it. And like keeping it that's kind of quiet like so it was upsetting. It was an upsetting conversation, because I was like, oh, okay, well, insulin can make your blood sugar low, my Oh god, am I saying this in front of a bunch of people that don't know it, you know? And oh my god. Yeah. And there were also some newer diagnose people there to like, so I don't think everybody wasn't talking about it. But it was clear that people were very, very private about this stuff. And right, I take your point, I think you have to, no matter if you're orthodox or not, like I think you have to let people around, you know, like, this is my situation. This is what could happen. And here's how you stop it. Because if you're, if you get into a spot where you can't help yourself, you can't help yourself. Right? Yeah, that's

Faygie 50:45
right. And it's also just the, you know, for someone living with diabetes, you already have a lot of difficult things that you're dealing with every day. To add secrecy on to that just increases your stress level by a million managing a kid that feels like they can't tell their friends or their teacher that that's crazy. Like, so to me, that's a really like, I don't know, my son, we I mean, we spoke to everyone at the school before he started school that year. And he spoke to his classmates on the first day of school because it happened over the summer. And his friends, you know, and he told him, I get a phone call from a friend because her kid came home and said, gnocchi and won't say his last name. He is the coolest kid. He has a rabbit and a lizard, and he has diabetes. And she's like, whoa. She calls me and she's like, something happened over this.

Scott Benner 51:37
We got diabetes over the summer, we also bought up an inground pool.

Faygie 51:43
But the kid thought it was the coolest thing, I guess. I don't know. He came with his technology. And he's showing everyone you know, his phone. And you know, they're not allowed phone. So he has a phone, obviously. And

Scott Benner 51:53
do you? I don't know what the word is. I don't have the word. But Chavez, do you do that every weekend? Yes. How does he make out with that? Well,

Faygie 52:02
by Jewish law, you can do anything for diabetes, on Shabbat, you can use your phone, you can use a scale to weigh your food you can use diabetes is considered like a dangerous situation, because an emergency can develop. So we treat it at just about like a regular day, he puts his case his phone in a special case, actually, that says Shabbat on it. And on the back, it says in Hebrew, you should guard your life, which is a quote from like the Torah about you know, taking care of yourself. And so he keeps it in that case. And then if he takes it out somewhere, people know that, like, you know, he's using it for some reason.

Scott Benner 52:40
I see. Is that specific to your? What am I trying to say?

Faygie 52:47
Like my branch of Judaism? Yeah. Like, do

Scott Benner 52:49
you need somebody to tell you? That's okay. Like, could you do? Would you have to move temples, for example, to find somebody who's okay with that or not necessarily. In this

Faygie 52:59
situation? No, because with life or death situations, even the strictest Jews, life is very, very valued in the Jewish religion. And it supersedes anything. Like, I think the only thing we wouldn't be allowed to do to save your life is like, kill someone. Like if you put a gun to my head and said, kill this person, maybe I wouldn't be allowed to do it. I don't know. Basically, we we guard our life over everything. So in that counts more than the other, you know, prohibition. So, in terms of like Shabbat, we handle it just about the same. I mean, I try to do things to make it a little easier. We have like an iPad glued to the wall in the kitchen. That's on constant display of follow. So I don't have to take out my phone and look up to see his numbers. I could just see it all the time. We actually leave it up all the time. So it's really easy that way.

Scott Benner 53:51
Oh, I see. That makes sense. Okay, what about the kind of mean? Are you now having like traditional foods after the end? After after, like one when the lights come back on and you guys are eating? Like a lot of those traditional foods were difficult to Bolus for you avoid those? What kind of food? I don't know. I don't know. It was a bunch of food I'd never seen before in my entire life. And it was all like, there's a lot of oil, it was heavy. And I was like, Oh my God, how are you guys? bolusing for all this, like it's really so

Faygie 54:26
that organization that I think is the one that brought you in to speak they actually have a handout that the doctors have I got it from a friend. I don't know why my doctors didn't give it to me. Maybe they don't think I'd look as I don't know, I dressed religious like from my hair. I don't know. But it's a sheet that actually has tells you how to Bolus for different foods like by weight or by volume but in general. My family does not eat I think as as heavy as that we eat kind of more, more American and a little bit more how Coffee, I read the glucose revolution I tried to incorporate some of those strategies. We eat more healthy in general. My son has magic spoon, he likes it. So I know there's a whole debate about the taste, but he likes it. So he takes up for school for breakfast. We do eat like more on Shabbat and we probably eat like some foods that are less healthy, but not all the grease and the not Not really. You

Scott Benner 55:26
should have seen when they were at meals, where I was there with a CD, there was also another person there speaking and he and I kind of became close. We were both not celebrating. So we're just next to each other. But at one point, I said, Is it midnight? Are we eating at midnight? What is happening? I shouldn't be asleep. Saturday night. Like I guess. I was like this late meal. And I was like what is happening? And then they they like showed us a plate and they're like, how would you Bolus for this? So he and I like kind of went off to the side, we both came up with a bolusing strategy for this meal. And he kind of went with one idea. And I went with it other and we stood up and we were we gave it people like no, that's not right, and blah, blah, blah. It was really fantastic. And then the next day, someone came up to me and said, I did what you said for my meal and my blood sugar was like 77 Afterwards, that's never happened before. Just like you really know what you're doing. And I was like, I mean, I guess he's like, I never would have done what you said to do. And it just worked out so well. And I was like, Oh, I'm I'm happy for you. And I was like, there we go. Like,

Faygie 56:36
I'm gonna go to me.

Scott Benner 56:38
It's really it was I had a great time. But anyway, okay, well, you're on vacation. So I'm gonna let you go. And and but I really appreciate you going over all this with me. It was incredibly interesting. You were very kind a number of times about the podcast. I appreciate that too. I'm glad Daniels doing so well. And that you guys are still learning things and moving forward. It's all like really heartwarming for me to hear. So now it's amazing. Thank you so much. Well, it's my pleasure. We hold on one second for me. Sure, thanks.

Arden has been getting her diabetes supplies from us med for three years. You can as well, US med.com/juice box or call 88721151 for my thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com. To us Med and all the sponsors. Huge thanks to cozy Earth for sponsoring this episode of The Juicebox Podcast cozy earth.com use the offer code juice box at checkout to save 40% off of your entire order. A huge thanks to Dexcom for supporting the podcast and for sponsoring this episode dexcom.com/juice box go get yourself a Dexcom g7 right now using my link. Thinking about getting an algorithm pump don't know where to begin juicebox podcast.com up in the menu click on algorithm pumping and you're gonna get a long list of a lot of episodes that will help you to understand better juicebox podcast.com Find algorithm pumping. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1149 Cold Wind: Healthcare Whistleblower Dr. Feelgood

'Veronica’ was diagnosed with T1D when she was 12. We talked about doctors inibriated at work while dispensing questionable drugs out of the endocrinologist office. Her voice and name have been changed to protect her identity.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 1149 of the Juicebox Podcast.

Today, the person we're calling Veronica is a 47 year old type one. She was diagnosed at 12 years old and she works in a doctor's office. Today's cold wind is particularly chilling, as Veronica will talk about how the doctors in her office were drunk and high and dispensing drugs that were outside of what you might expect from an endocrinologist. 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. The T one D exchange is looking for US residents who have type one diabetes are are the caregiver of someone with type one. All they want you to do is go to T one D exchange.org/juicebox. and complete the survey. That's it. It'll take you about 10 minutes it'll help people with type one diabetes. It will help you and it will support the Juicebox Podcast T one D exchange.org/juice box. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes

this episode of The Juicebox Podcast is sponsored by the only implantable sensor rated for long term wear up to six months. The ever since CGM ever since cgm.com/juicebox. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number two get your free benefit check and get started today with us MIT. This episode of The Juicebox Podcast is sponsored by the Omni pod five, Omni pod.com/juice box. My daughter Arden has been wearing an omni pod every day since 2006. And it has been a constant friend in her life with diabetes, consistent tubeless and worryfree Omni pod.com/juice box. So let's find out a little bit about you. Do you have type one or do you care for somebody? Who does?

'Veronica' 2:44
I have type one?

Scott Benner 2:45
How old were you when you were diagnosed?

'Veronica' 2:47
12

Scott Benner 2:50
Okay, about how old are you now?

'Veronica' 2:53
47.

Scott Benner 2:55
Seven. Okay. 20 230-240-2035 years ago? Yeah, that's a long time.

'Veronica' 3:04
It's been a hot minute time flies when you're having fun.

Scott Benner 3:07
Are you having fun?

'Veronica' 3:08
The first couple decades were rough.

Scott Benner 3:12
last 15 years, it's really coming together.

'Veronica' 3:15
I mean, honestly, yes. The technology has made things much, much easier. My highest agency was 19. Oh, wow. And that was 10 years after diagnosis. So I mean, I knew better.

Scott Benner 3:30
Yeah. And 20. That's just 25 years ago, which makes it like 1999 2000 ish around there. Yep. Yeah. Wow. You know, I just saw I get when people leave comments on things like I get notes about it and stuff like that. I just saw somebody leave a comment on like a YouTube video. And the person's like, you know, I've had diabetes for a really long time. And I was very accustomed to blood sugars and the 300 words and a one sees like, as high as 12. And then I got an Omnipod five, and the person's like, you amazed at what's happening. I'm waking up my blood sugar is like 115 in the morning, like that kind of stuff. And then I read that 20 minutes ago, and then you literally came on and said everything was a hot mess till technology got better.

'Veronica' 4:13
Well, I got a pump in 2001. And but I hate finger sticking like that is the worst. And so and I didn't like those early CGM that forced me to prick my finger. So

Scott Benner 4:27
I kind of avoided it.

'Veronica' 4:30
Did you try it? At least or no? So I got a pump in in 2000 2001. And I've worn a pump since then. And my agency was probably 1011 until the Dexcom G six came along.

Scott Benner 4:44
So walk me through how that happens. Is it partially because you don't want to test your blood sugar? Is it apathy, like where do you

'Veronica' 4:51
it's apathy but like so when I was diagnosed, I was told there would be a cure in five or 10 years and I think at that point, I just kind of decided I don't want to live five or 10 years with this disease. And I didn't make many plans for the future. And I got to the 10 year mark, and I was like, What do I do now? I mean, there's just a lot of stuff but so on with G six, and pumping, we were probably at eight, nine. And then with the control IQ, then it's like six, seven.

Scott Benner 5:21
So if you have access to the data, with a G six, for example, and you have a pumps, you're not shooting insulin all the time. So it's, it's as easy as pushing a button. And eight or nine a once the C still says to me, I'm not really counting my carbs. I'm not Pre-Bolus and meals, I'm not correcting highs Is that about right?

'Veronica' 5:39
Yeah, I still I'm not great at Pre-Bolus meals, I just, I struggle with that. And so, and there's a lot of other things that have happened, I struggled with depression for a very, very long time. diabetes, most of us know comes with a very generous side serving of depression. So and but I was able to mask it very well. And about five years ago, I had my first TMS treatment, transcranial magnetic stimulation. And that was pretty life changing, but it unmasked the ADHD that has always been there. But the depression always hit it. And so now I'm learning to like, I can finally identify the ADHD and know why. I'm not good about Pre-Bolus thing I just forget, like, I'll just skip a meal altogether and not even notice. So skipping. Bolus is like child's play. Like that's just how I roll

Scott Benner 6:37
when you said you could mask the depression. How did that work? How did you like nobody

'Veronica' 6:41
really knew the extent of the depression like I, if you meet me face to face, I'm happy I'm like, but there was still just this bone deep. And there were times that it would get a lot worse where I just couldn't get out of bed and couldn't function. But all of my energy would go into my work. So there was not any energy for anything else.

Scott Benner 7:08
Do you have a thyroid issue at all?

'Veronica' 7:10
Absolutely. That's the other side surfing.

Scott Benner 7:14
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'Veronica' 9:55
I don't remember much prior to diagnosis. I don't believe I was depressed I also believe that my elementary education was unique and could easily mask ADHD. Then I went on to middle school and sixth grade I get diagnosed. That's a whole nother story. That sounds crazy. How

Scott Benner 10:16
is it unique,

'Veronica' 10:17
your that education piece that would mask ADHD. So I went to a public school. And it was a special program that I got to choose my teachers and my classes. And there were no letter grades. I just wrote a letter home to your mom and dad, this is what I've been working on. So the mornings were split up between language arts and math. And it was a very tiny school that were for teachers when I started there. And I was there for five years. And then the afternoons the teachers would do two to three week units, teaching something that they were interested in which let me tell you, it makes a huge difference in education when the teacher is passionate about it. I didn't. This is crazy to say, I did not know the difference between science and social studies until I was in middle school. Because get this it's all connected. The

Scott Benner 11:10
what hippie part of California you from exactly. It was in the Northeast? Oh, it wasn't California. It was not California. All right. I got it. I see what's happening here. Yeah, so not hippies, high minded intellectuals.

'Veronica' 11:23
It was a nice combination of the two. Gotcha. But so for example, if we were studying monarch butterflies, we were looking at their migration patterns and how the weather affects it and the geography of where they go and calendars of when they when they migrate and their lifecycle. And so everything is connected. And that's why when I talked to people I talked about, well, we can look at the science of history, and we can look at the history of science. And so that's why those two things have have always been they're all interconnected. There's not any difference in my brain.

Scott Benner 12:00
All right. So is there any chance that well, let me ask first, when did the thyroid diagnosis come?

'Veronica' 12:08
I was 17. Do you can manage that? Well, it's okay. It goes up and down. And I, you know, I'm not great about being super consistent with my doses. Right now I have it set to where the doses set. Well, I just changed insurance. So I have to switch to unit three. So that's going to be a cluster of confusion. Yeah, I the dose is set so that I can miss every once in a while and not see a big impact.

Scott Benner 12:38
Or do you have as much trouble with that as you do with the insulin?

'Veronica' 12:42
Not as much? I don't think okay. I mean,

Scott Benner 12:45
so high blood sugars, and an unmanaged thyroid could easily give you depression? Yeah, yeah. But there's a doctor ever tie that together for you. Like, hey, Veronica, if we take our insulin and keep our blood sugar from being high, you'll avoid this cloudy feeling you maybe you'll feel better, your head will be clearer, you'll be able to, like live easier, like that kind of stuff.

'Veronica' 13:08
Not in relation to the depression, you know, lack of energy in my late 20s and early 30s. They're always like, it's your blood sugar. It's your blood sugar. It's your blood sugar. And I'm like, I'm doing the best I can with what I've got. Like, I don't know why I can't do the things I need to do. And so it was always get your blood sugar under control. And I never really believed them. I was always like, that's just a line. Like, there's gotta be something else.

Scott Benner 13:33
But the man is just trying to get you to do what they want to do. Yeah, they're

'Veronica' 13:37
trying to manipulate. But now that that my agency is better, and like, I'm feeling more energetic, and my husband and I joke, and we're like, we're in the prime of our lives right now. Like, who needs your 20s or 30s? Like, this is this we're loving life.

Scott Benner 13:55
I see your knees don't hurt too bad. No, no, no, here you go. Wait a lot of sores. Okay, so you just said I'm doing the best that I can like referring back to the past. In hindsight, were you doing the best that you could? I'm starting to take it for granted. I am I'm starting to take for granted that Ardens diabetes supplies just show up. But they do because of us med us med.com/juice box, we get an email that says you know do you want to refill your order? And you click and say yes, and then it just comes to the door. There's not a lot to say when things are done well yeah, I could stand here and tell you us med carries Omnipod five Omnipod dash Dexcom G seven G six tandem x two libre three libre two. I mean, they've got there's so much. I'm not even listening at all. I should be. I will at the end. I promise. My point is this. It just works and we Don't talk about things enough when they just work us med.com/juice box or call 888-721-1514 Get your free benefits check and get started today with the white glove treatment offered by us med us med here's what they got. FreeStyle Libre three and two. They got it. Omni pod dash. Yes. Omni pod five, aha, tandem? Yep. What about have they served a million people with diabetes since 1996. They have better service and better care is what you're gonna get from us med but you're also going to get 90 days worth of supplies, and fast and free shipping. They carry everything from insulin pumps to diabetes testing supplies, the latest CGM, and they accept Medicare nationwide. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or call 888721151 for not the best that there is the best that you that you had available to you did. Does that make sense? The difference? Yeah,

'Veronica' 16:03
yeah. Like I'm gonna be really generous with most diabetics out there. I honestly believe that most people with diabetes are doing the best they can with the information they've been given, and they are sorely under educated. And you are as well. I don't know that I am. Like, I am able to pick things up and piece things together. And so in my role, currently, I talk a lot to people. And I'm a big advocate for experimenting with yourself. You know, I'm like, especially with the type twos and putting them on CGM. I'm like, experiment, see which foods drive it up. And then and I'm not about saying don't ever have that food again and like, minimize it, reduce it, don't don't use that as much. If you notice that rice makes you go up every day, then, you know, you got to change that has to change or find a good substitute. But I think most I mean, honestly, when I was, I don't know, 13 I had a week of inpatient education at Joslin diabetes Center in Boston. That was when insurance would pay for such wonderful things.

Scott Benner 17:18
But it didn't I mean, you still struggled right out of the gate though, right? With giving yourself insulin you didn't like the the fingerprint looks like I didn't like

'Veronica' 17:26
the fingerprints. So alright, let's go to the diagnosis story. I had an afternoon paper route. And the day before I was diagnosed, my one of my teachers said, NAME you're not looking very well. Are you okay? And I said, Well, my mom thinks I have something called diabetes, but I don't know. I'm going to the doctor tomorrow. I do remember drinking a ton of water. In fact, I felt like it. I would drink water. It would just still come out cold. right through me. It's

Scott Benner 17:56
a funny way of saying it went right through.

'Veronica' 17:57
Yeah, it was it was ridiculous. I finished up my paper out that afternoon, grabbed a snack at home before my dad took me to the doctor. And my mom ran a home daycare. And so the snack of the day was fluffernutter on graham crackers. And so that's peanut butter and fluff. Marshmallow Fluff. And I took an entire sleeve of graham crackers with and made them into the peanut butter and fluff sandwiches and ate the whole thing before going to the doctor. Oh my gosh. So yeah, my blood sugar was 800 or something.

Scott Benner 18:33
How did your mom know you had diabetes? She knew

'Veronica' 18:36
somebody that had it. And so she had grown kind of concerned I was losing weight. When I was diagnosed I was 95th percentile for height and fifth percentile for weight. And I think her cousin's kids had it as well. diabetes, I had never met them. I still don't think I have kids.

Scott Benner 18:58
I got it. So she had seen it before a little bit and then recognize some of the symptoms from other conversations she's

'Veronica' 19:05
probably had in the past. Yeah. And she didn't take me to the doctor my father did. Because she was at home with the kids watch. at the daycare. Yeah. And so they he took me to the doctor and the doctor said, okay, she's got type one diabetes. This is not a death sentence. Life still goes on. So continue with your normal activities. My dad took me over to the hospital and they started an IV. And he left to go home to get mom because they only had one car. Because this was the 80s Yeah, that candy striper came around and asked if I wanted a candy bar. I was like, oh, yeah, and and then she looked at my chart and she's like, you can't have candy ever again. I was devastated. So what are you talking about? So my mom came that night. This is where it gets tricky. The the doctor had said don't change you know your Plants life isn't ending life goes on. So keep your plans. The next day, my mom flew halfway across the country, to her parents on a trip that she had planned. And so I was in the hospital, she was still away. My dad learned to give me the injections and brought me home from the hospital on a Friday and gets

Scott Benner 20:22
tricky because you felt abandoned or why? Yeah, I

'Veronica' 20:25
mean, like, What parent does that?

Scott Benner 20:30
I mean, is this a thing we have come to expect from her over time? Or was it a one off like, weirdo thing, whereas the doctor said, Don't change your life? And she's like, well, I have a trip planned. So I guess I'll take it.

'Veronica' 20:40
She's never been real involved with the diabetes care, and partly probably from the beginning. And and you know, we joke about the abandonment issues now. But I still got a lot of work to work through with that. But that's just my work

Scott Benner 20:53
to parents still together. Yeah, yeah. And she didn't leave you leave you she just went away on this trip and came back. You went away on

'Veronica' 21:00
the trip. She didn't tell her parents before she left. And then she got there. And they could see something was wrong on her face. And they were mad at her for going. But they were auctioning off the family farm that had been in the family for 150 years. So I mean, I don't know, like, what would I do as a parent? I don't know. Like, you don't know. Do

Scott Benner 21:20
you have kids? Yeah, I

'Veronica' 21:21
have one. I would probably stay with her. Make sense. Which is funny, though. Because I, in our family on the hands off mother, my husband works at the school that she goes to and so they commute to and from school together. And, you know, he's was a teacher and so he's more hands on with the homework. And then I am is that

Scott Benner 21:44
because of how you were raised? Do you think you are you mimicking what your mom did?

'Veronica' 21:48
I don't know if I'm mimicking I just I know that the way that it's set up that they spend more time together. I also know that the elementary school experience that I had doesn't lend itself towards understanding her elementary school experience. Now that she's in high school, you know, we we compare, you know, we we talk Latin, we talk, biology, whatever she's taking, and, you know, work through the whole the homework, so,

Scott Benner 22:17
but you're not you're not emotionally disconnected from her though. No, no, just some of the day to day stuff falls more toward your husband. Yeah, I gotcha. All right. What do you do for a living now?

'Veronica' 22:29
So currently, I am. My title is point of care specialist. I work in an endocrinology office for a small distributor slash pharmacy have diabetes technology. And there have been some changes in the office since I've been there. But when I started, I was paid mostly by the company I worked for and a little bit by the doctor's office so that I could fall under the pump training contracts. And so I'm a certified Omnipod, and tandem trainer. And so I start people on CGM EMS, I get their orders going into the Alright, was doing prior authorizations. The doctor has since been acquired by the hospital and now I have no access to records at all. So it's changed but it's really it's been good. Okay. So

Scott Benner 23:19
you work for a company that we does distribution? Yes. Okay. So they're

'Veronica' 23:24
both DME and pharmacy, mostly Medicare, but soon to have some changes to that. So that's going to be good.

Scott Benner 23:31
And what's your educational background?

'Veronica' 23:32
Oh, gosh, um, I found a five colleges five, I don't know four or five. And I have an associate's degree in general studies. And I have that's an AE in General Studies. And then as in nuclear medicine, technology.

Scott Benner 23:48
Okay, what did you do before this?

'Veronica' 23:50
I worked with a homeless for a year and before that I was at another Endocrinol office as front desk, but ended up being their pump trainer and doing pretty much what I do now. So that job prepared me for what I'm doing now. But it was a Worcester house. So. So that was during COVID. So that was right when COVID started. And they work from home for a year and a half. Everything from home. And so I went into the office every day through COVID, collecting co pays, and doing punk trainings and all of that, but they also Hindsight is 2020. I didn't always see it while I was there, but pretty sure there was some pretty heavy drug use and a lot of drinking and

Scott Benner 24:36
for I'm sorry for you or for them for them. Okay, so are you talking about the people running the office?

The providers? Oh, okay. So

the doctors were involved in a lot of heavy drug use and drinking. Yes. I think he's your endocrinologist. Yes. Ah, geez. How did that impact the practice? They were were

'Veronica' 25:00
able to hide under the cover of COVID. And so a week before I was fired, one of them was like, Oh, we love you so much. We want you to stay with us forever. You're going to be such a wonderful diabetes educator level, blah. And I just smiled and nodded. I was seeking an exit plan at the time. But I also had a home refinance in the works. The day that I got fired, the phones went out and I was in and out of the office, trying to fix that. And I came back in and I could tell she was not happy with me. And she just started screaming in front of a room, waiting room full of patients get the eff out of my office. You have no I top of and then her husband had, it was a married couple that were the two providers in the office. And he had she charged at me at one point, and he had to hold her back. And I was like, I'm gathering my stuff. And I'm out. And I still to this day don't know why that happened. Were they both using? I am not sure. I suspect okay.

Scott Benner 26:02
Did they do it in the office? Like were they hired drunk? Like during the day,

'Veronica' 26:06
once they came back from COVID, there were a number of days that we had to send her home, quote unquote, sick. And he would he would cancel his day too, and take her home and care for her. And Hindsight is 2020. And I'm like, Oh, my. So yeah.

Scott Benner 26:26
Do you think that impacted the care they were giving to people?

'Veronica' 26:29
Oh, absolutely. People, the patients absolutely adore them. Absolutely adore them. In fact, she was my provider before I got fired from working at the office. And I enjoyed her. But I knew there were some things that were off. But like, it's a very codependent relationship, they will tell patients with patients want to hear and do whatever the patient wants. And, but, and if the patient has any problems with the front desk, they'll say, Oh, I'm so sorry. The front desk let you down. And I can't go and say to the patient, I have messaged her 15 times every day for the last 15 days and she has not responded. She is not doing her job.

Scott Benner 27:15
And then puts it back on the people working out front rack

'Veronica' 27:18
she'll she'll put it back on the people working up front and then play savior. So she's, she's making this problem and then saving the patients from it so that they never abandon her.

Scott Benner 27:30
Oh, you think that's on purpose? Like, do you think she created the problem to save the problem?

'Veronica' 27:36
I don't think she knows any other way of operating. Okay. Okay,

Scott Benner 27:41
I see what you're saying. Maybe somebody was pretty bad to her raise and her is what you're thinking of? It's quite possible. Yeah. Gotcha. Well, gosh, I wonder how many people ever wondered if their doctor was drunk? What kind of drugs do you know?

'Veronica' 27:58
Everything except ketamine.

Scott Benner 28:01
So heroin?

'Veronica' 28:04
I don't know if that was happening while I was working there. Okay. Coke. I don't know what was happening while I was working there. I know that hindsight, and from the wine I've seen in the office and the the pictures of of the alcohol consumption for COVID. I know there was alcohol and highly suspicious there were other drugs. She is flat out admitted to, to me that she's used everything except ketamine. I see another girl in the office that constantly had to heroin not like another employee. Yes. Like it like out front or a nurse in the back or something like that. The medical assistant? Yeah,

Scott Benner 28:45
I guess it's easy. But

'Veronica' 28:47
I grew up fairly sheltered. I didn't. I didn't even know what we'd smelled like until the job after that. Which is hysterical to me. After that. I went and worked with the homeless for a year and I absolutely adored that. So that's where I learned about weed.

Scott Benner 29:06
That's the homeless tell you about weed? Yeah, doctors more high end liquor and things like that. Yeah. It's nice. Holy crap.

'Veronica' 29:17
Oh, that's just the tip of the iceberg. Keep going. Like, that's that office. That pretty much sums. Oh, well. I mean, the other part of the story is, I can't make a report to the state or anybody about that, because I was fired. And then because it would be retaliation. But my dentist is in the same building. And every time I go to the dentist, he says, Oh, I started stumbling to work again today. And I say, okay, I get that. I can't report her, but you can make somebody has got to report her. But he says, oh, no, that's her husband's job. Okay, whatever. How long

Scott Benner 30:00
as that I mean, that practice been up for over a decade, probably

'Veronica' 30:03
a decade or less. Okay. They've, you know, they've made the rounds in our area in different hospitals and groups, and then they made their own practice together.

Scott Benner 30:15
Do you think you have to work there to know that about them? Or do you think that's common knowledge and people just ignore it?

'Veronica' 30:20
I think you have to work there to really understand it. But if you look on the court records, you can see the DUIs. Oh, I see. Gotcha. Oh, and felonies, I'm sorry, felonies for assaulting a police officer.

Scott Benner 30:36
Oh, you can't do that anymore. What's the World Cup? Oh, my gosh, I wonder how people can go about looking into their physicians. You don't I mean,

'Veronica' 30:48
I mean, other than knowing, like, if I look up the NPI, there's nothing. It's not until I look on the court records that I can see. I say,

Scott Benner 31:02
did you notice any like, was there a decline in care that they were offering people? Like I know, you said they basically just did whatever people wanted. You call it a code to pay? Yeah, between her and the.

'Veronica' 31:14
I mean, like, I will say that was the first endo practice I worked in. There were a lot of testosterone patients that were having to go to the one blood, because they will probably say keenetic. Which means if I'm not mistaken, that just means you're given way too much testosterone. The other thing was like, they were like, Oh, we don't need to palpate a thyroid, because the changes are so minuscule that we're just gonna send them out for for ultrasound anyway.

Scott Benner 31:53
So they may be overmedicating testosterone patients. Yeah. Yeah. And then not doing the physical checks on thyroid that that are called for. Yeah. And then if that if patients pushed for something, whether it was medically necessary or right or didn't matter, they would just kind of went with the flow to keep everybody happy. Keep everybody coming back.

'Veronica' 32:16
Yeah, well, I mean, he's, he's practicing as an endocrinologist. I don't think he's a board certified endocrinologist. But he's prescribing a whole lot of controlled substances for an endocrinologist like I don't in the other practice I'm in they're not prescribing. Other than testosterone. There's no controlled substances prescribed. What

Scott Benner 32:41
are some examples of stuff you saw prescribed out of their

'Veronica' 32:45
oxy code on from

Scott Benner 32:47
your Endo? Yeah.

'Veronica' 32:51
In fact, one patient, she wasn't real old, she passed away. And apparently, he joked to one of the other people in the office that it could have been his fault.

Scott Benner 33:02
That's something her third third hand, third hand, okay. Like, hey, I might have given her too much of the Oxy

'Veronica' 33:11
might have over medicated or, I mean, like she was, she was drug seeking. Like, like, Yeah, but when you're using yourself

Scott Benner 33:20
in the game, yeah. game knows game. I see what you're saying. Yeah. Oh, well, that's that's something. Yeah. This is usually the time in the interview when I tell everybody give up. Oh, my gosh, I never know what people are gonna say. So this has been something that's an adult endocrinologists office. Yes. So I'm assuming plenty of type two patients. Yes. Now these people, if they're going there for good help, they're not going to be finding it.

'Veronica' 33:53
They care. It's just such a weird thing. I don't know how to describe it because like I was her patient, and I, you know, she did what I needed her to do and was helpful and some patients are getting okay care and other patients are iffy. And it really depends on

Scott Benner 34:12
if your oxy buddies or not.

'Veronica' 34:14
I don't know. I have no idea. Like, holy

Scott Benner 34:18
hell. Now you're at a different doctor's office now. I am okay. And do you see any wrongdoing there? Is that a good experience?

'Veronica' 34:29
I enjoy this office that I'm working at now. I like it a lot. I'm not sure I could find another endocrinologist to work with that would understand my perspective the way this doctor does, okay. Because he has type one. And so there's a doctor in the office and there was a nurse practitioner. And at one point after Easter last year, I had my desk drawer are full of stale Easter candy. And the nurse practitioner came in and was like, Do you have any snacks? And I was like, Yeah, and I opened up my drawer and sheets. Her eyes got wide and she's like, Oh my gosh, you're so bad. And I'm like, normally when people tell me I'm a bad diabetic and like, you're not my doctor, leave it between the doctor and I. But I like, I was flummoxed. Like, are you kidding me? And so

Scott Benner 35:27
you took that you took that as a bad diabetic, not just like, oh, my gosh, you have so much candy in a drawer. Yeah, yeah,

'Veronica' 35:33
you're bad diabetic. I mean, I've heard it called patients that diabetics frequently so to their faces. Oh, no, behind their back. My mantra is, there are no bad diabetics, we're all just trying to keep ourselves alive. There may be some that are actively trying to kill themselves, but they're on the installment plan, if you will, but she went and got the doctor and was like, You're not gonna believe this. Come look at this. And he picked his head and looked in my desk drawer and looked at me and goes, No wonder you're so happy. And I was like that right there is what makes a good provider that understands that life is not over. I still have my favorite candy as long as I'm eating it in moderation and not going hog wild. Which I'm not always great about between the ADHD and just having a dysfunctional pancreas. But, so yeah, I

Scott Benner 36:30
like he overtreated a lower two.

'Veronica' 36:34
I've retreated some lows and maybe even some highs.

Scott Benner 36:40
overtreated highs with candy?

'Veronica' 36:42
Well, you know, you crave sweets when you're hot. Yeah, that's interesting, until you get too high. But he gets it. However, he's been in practice 30 or 40 years. He's not done anything for himself in the practice. What does that mean? I'm sorry. Like, he doesn't do the prescriptions. He doesn't like the the MA's, write the prescriptions, okay, and send the prescriptions and everything. So he just signs off on everything. He doesn't understand how the pump technology works. And so even the other day, I gave him a pump start order form. And it was completely blank. And I just got it back with a signature on it. No, you're supposed to fill it out. He's like, Oh, I trust you to do that. You got this, you know what you're doing? And like, that's all well and good. And I certainly would not trust him to do it. But that's not in my scope of practice.

Scott Benner 37:38
Is that lazy? Or is it just inadequate understanding? He understands

'Veronica' 37:42
because he wears some that he kind of wears the technology he wears, he wears a five but in manual, so he understands early pumping,

Scott Benner 37:52
there's an endo, who has type one diabetes, doesn't really understand how to use the technology. Exactly. And is basically like what, like, I don't know, like just the person who like comes in and waves and says the nice stuff to you and then sends the nurses chips, and then tells the nurses take care of the rest of it. Yep. Have you ever heard him give people advice as he helpful to people with

'Veronica' 38:17
their diabetes? Um, it depends on the day. He can be. And he has some things that he says that I think are helpful, like, I can't take your diabetes away. But I'm gonna have you talked to NAME, and she'll help you with some of the technology that can ease the burden a little bit. Yeah, diabetes sucks. Like, I've heard him say that a number of times. So he, he gets it from, like, having lived with it. He's also trying to change the practice a little bit now that it's been acquired, doing less with diabetes, and more in some other endocrine areas,

Scott Benner 38:54
because they're more they make more money on it, or,

'Veronica' 38:57
Oh, I still can't figure that out. It's weird. Because people I mean, endos for diabetes are hard to find very hard to find they're horrifically under compensated because, and this is the thing that we're finding since the acquisition is that the managing diabetes from a provider standpoint is very labor intensive. It takes a lot of time, if you're going to pour over the data the way you should and that type of thing. But not just pour over the data, forget the data. If you're talking about DME orders, ongoing prescriptions all the time, it is way more labor intensive than any other. There's there's nothing else like it. Yeah, even CPAP supplies aren't that labor intensive. I

Scott Benner 39:48
understand what you're saying. I didn't think of it that way honestly prior but there's more to understand there's more to explain. There's more paperwork to do more getting people for on the devices. Send, make sure they have their insulin and all this other stuff that and you're not being paid for that. Right?

'Veronica' 40:05
Yeah. So that's why the company that I work for puts these point of care specialists in the office to free up the time, so the doctor doesn't have to explain the CGM. I go in and do that for him. And we'll even put it on if I've got a sample to put on. But he relies on me for all the education. And I'm not trained

Scott Benner 40:29
for that. What do we really need the doctor for? I mean, maybe except for oxy. But like, what are we? What are we? What are we really, if they're just glad handing you coming through and then somebody else in the office is doing all the work on the paperwork side and training you on the stuff? Is the doctor just there because they need to be because we need that degree? Yeah. That's all very uplifting. I cursed the moment I thought to make this series by the way.

'Veronica' 40:55
I'm sorry. Like, there's there are glimmers though. Go ahead. So there's there's glimmers of positivity and hope. Of course, my story hasn't given many of those glimmers. But like I there's some other things I'd like to see change. For example, diabetes educators, from what I understand of the certification process that they have to go through. They're only tested on some very antiquated medications. And most of it is about type two. They're still talking Pio glitter zone, they're still talking NPH and regular

Scott Benner 41:37
wait in the States. Ca

'Veronica' 41:41
for the series, CDC is exempt from what I have heard, I haven't taken the exam yet. I'm also in school for nursing degrees, so I can become a CDE. But that's a whole nother story. I mean, because I'm pretty much doing it. Now. I add live as I go, which is really wonderful. But that's part of the reason I'm all about experimentation. And I say find what works for you. Because each and every person is unique. Each and every body is unique. And so we know what works in general. And the doctor says this all the time. We know what works in general, we just got to find out what works for you. And that's why he's pretty laissez faire, when it comes to Oh, it doesn't matter what you put on the pump start, you know, it's close enough, we'll fine tune it as we go. But when we're talking diet, I'm talking to people and I'm like, figure out what food does to you. And then I say, okay, so figure out if eating your food in a different order helps your blood sugar. And I then I got the glucose goddess and say, Okay, try this and see if this works. And they look at me like, Where

Scott Benner 42:48
have you been all my life? Yeah, just changing my digestion might help this like my god. Thank you. Yeah, yeah. Are you in nursing school right now? Like, where are you at in that, in that time?

'Veronica' 42:57
Finishing up my prerequisites for a nursing program. Okay, so I haven't gotten in yet. But I've been feeling pretty positive about it. Good for

Scott Benner 43:06
you. And then how long will you be in? In the nursing program? Oh,

'Veronica' 43:10
I'm just, I'm all about collecting the associate's degrees. So it'll be an Associate's in nursing. I should I mean, I'd had enough hours in this endocrine clinic that

Scott Benner 43:20
should be eligible for the CDC ces test, right? Well,

'Veronica' 43:24
I think you have to work in nursing for like, two years. So I'll have to, you know, put around and do something until I can sit for it. I can't. I like I feel like we could have a lot of other people encouraging people with diabetes. Not maybe not necessarily CDC es, but people with diabetes have a lot of knowledge. There are no dumb diabetics.

Scott Benner 43:46
You do pick up a lot as you go. That's for sure.

'Veronica' 43:48
You pick up a lot as you go. But there are no dumb diabetics. Unfortunately, it is a game of survival of the fittest. And if if you're not able to, to make the right choices for your blood sugar, you don't really last as long. The

Scott Benner 44:05
fittest you mean as much as being able to, like do the things over and over again, every day that you need to do. Well,

'Veronica' 44:11
I mean, like, what I mean is the fittest from a, a smarts standpoint, if you're not smart, you're not surviving. Oh,

Scott Benner 44:21
I think I get what you're saying. So, if people are challenged by the process of managing diabetes, like intellectually challenged by it, yeah, and they can't rise to the task, then they're gonna have more outcomes that are or are bad, and that really could shorten their existence. That's what you're saying. Absolutely.

'Veronica' 44:39
I mean, I knew guy. I don't. I don't know how much of the story I really know. But he got it from when I was growing up. He was having a low blood sugar and thought it would be a good idea to unfreeze his pipes with a blowtorch

Scott Benner 44:56
during his low blood sugar. Yeah, let's

'Veronica' 44:58
just say that didn't end well.

Scott Benner 44:59
I don't understand what's alright. Well, what the hell? I mean, I'm really stuck back on the drunk Doctor handing out the oxys. Like, it's really crazy.

'Veronica' 45:12
It's wild. It's, it's been a wild ride. But what I would like to see back to the CDC, yes, I would like to see some more specific certifications. So when I became a nuclear medicine technologist, you got your certification, and you were a nuclear medicine technologist. A few years later, they came out with some specific certifications. So you could specialize in cardiology, or PET CT, you had these areas of specialty. And I would love to see that with the CDC. Yes. So that you have people who are a diet specialist, or an exercise specialist, or a technology specialist, or type two specialists where you still have to qualify for the entire thing. But it's an extra step to prove that, you know, more than the average bear about these different topics.

Scott Benner 46:03
Yeah, that would be a big shift in how it works. Because then you have to find a way to build for those things, too. Right? Because that's what I mean, they don't, not the doctor, I'm saying that the industry itself, like, they'll come up with new subsets of, I don't know, job titles, if they can bill for it, you do see that moving that way, a little bit with like, nurses, right, like they're more training some nurses for in very specific things. Yeah, you know, so that they can say, oh, you know, this person needs this attention from a will have that person go through and do the training or whatever with them, then that's the thing we can build for. If that is really kind of how they think about it. They think about services as as billable time. Right. Yeah. I don't even know. Like, that's, you're pretty far away from getting that accomplished. But I know, I know. And I've

'Veronica' 46:53
been told that you reminded me of something that the first provider that I worked for, she had prescribed me Jardiance. And so as we came out of COVID, I had an incident where I was just, we were coming out of COVID. And I went outside and was outside all day. And but it was one of those cases where you can't take your mask off your face. And so I was way under hydrated, and I ended up in New glycemic DKA I had no idea I thought it was having a heart attack. And because she had put me on this, and she had told me but I completely forgot. I do think that when Doctor, or any provider prescribes something that's off label that they need to reiterate at every appointment. Don't forget, you need to stay hydrated, or you need to Don't forget you're using new 500 and a pump, you know, because those reminders, save lives. So

Scott Benner 47:52
you were on Jardiance which made being dehydrated, more dangerous. CHARNY

'Veronica' 47:57
it's is contraindicated in type one, especially when you get dehydrated it It lends itself to you, glycemic DKA. Why did she give it to you? blood sugar control and weight loss. And it was great for both of those. But I forgot to stay hydrated. And I honestly thought I was having a heart attack. But then when I got to the ER and the doctor was like, Oh, you're in DKA. And I'm like my blood sugar's to 12. Like what gives? And it wasn't until a month or two later that I put two and two together and was like, oh, it's the Jardiance that's what it was. But I bought myself a heart cath because my when when you're in DKA, or you leaked your opponent's, which is a thing that's released when you have heart damage, and so I leaked your opponent's and because I went in with heart symptoms, they were like, You got troponin, so we got to do a heart cath. But I've been worried about my heart for years and so I got the plane Bell health on that. So I was I was thankful for that whole experience in the end. Did

Scott Benner 49:00
a doctor you know it's so funny. I find myself saying that a doctor tell you but the more of these that I i do I'm like ah, it's a difference. But But did the doctor tell you that the Jardiance had was the reason behind what happened to you is just something you suppose I

'Veronica' 49:16
don't remember if I've had a discussion with her or anybody else about it since but the hindsight is 2020 and I go oh no, I know that that's exactly why that happened. Because I was warned about it went both way before it happened that if if you're not hydrated enough, you can go into DKA and you won't even know because your blood sugar will be fine. Yeah

Scott Benner 49:38
10 Side effects of Jardiance medication commonly used to treat type two diabetes and some heart problems common giardia and side effects include UTIs fungal yeast infection on your genitals that's fun, more serious giardia and side effects include dehydration, low blood sugar and serious infection. ketoacidosis too much acid in the blood is also possible but rare. When

'Veronica' 49:59
I had that 19 A one C, I had a low while in the ER with the dka. And they didn't believe that it was low. And my doctor, my endo at the time was nearing retirement and how only seen that, like two or three times in his career, and he's like your body is just majorly stressed out. And so my body does seem to want to boot me into DKA quicker than most. But that was my first time since being on a pump that I went into DKA. So it's not bad for 24 years of something. Oh, how do

Scott Benner 50:36
you knowing what you know, and having seen what you've seen in doctors offices? How do you moving forward take doctors seriously. I realize that everybody's not like that. And probably like, a using Doctor giving up is probably not the norm. I'm not saying that. But like, every day, you know what I mean? Like, how do you make the leap then?

'Veronica' 50:56
So I have a theory about that, or a sneaking suspicion? I've been trained since since age 12 that I'm responsible for keeping myself alive. And the doctor I currently work for will tell. Well, he told me that caring for type one diabetes is 90%. Patient led and 10% Doctor Yeah. And I would say it's, it's even less doctor and more educator or education. We don't relate to MDS are DEOs like other patients do. And so I've learned that I have to tread very carefully when I'm dealing with doctors and other specialties or PCPs. Because I've been taught that I am responsible for keeping myself alive. I am very attuned to what's going on in my body. Each of my shoulders has been frozen at different points in my life. And both times I went to a doctor early on and said, Hey, I think my shoulder is starting to become frozen. What are we going to do about what are we doing about this? And they're like, no, no, it's not frozen. And then six months later, I go back and see them. Oh, yeah, now it's frozen. Let's get you into physical therapy. I think cardiologists and are used to playing savior, you give the patient this pill, they take it, everything's better. diabetes doesn't work like that. And, and people living with type one have a very different relationship to all doctors than other patients. Does that make sense? It does.

Scott Benner 52:34
And it's something I've noticed, you know, by having these conversations, too, that I just interviewed a doctor the other day, we really like straight, straight guy like good stuff, like straight laced guy like thoughtful has type one is a peds, Endo. And, you know, still, like some of the messaging from him was like, you know, don't expect too much from your doctors. And, you know, it's interesting that the way you put it I agree with it's, you know, most things that you go to a doctor for are sort of finite. It's like, you go for this thing, and I'll give you a pill and it'll, you know, take it for eight days, and they'll go away. Or, you know, you have hypothyroidism take it forever. We'll test your blood sugar every test your blood every six months, make sure we have your dosing, right, like very, like kind of finite stuff like that. Yeah, there's no world where you're like, Okay, well, every day, every time you open your mouth, we're going to change the dose. And you're gonna have to figure that out on your own. So doctors aren't prepared to handle that. Right? So the ones that you get lucky when you get lucky, and you get one that is that's maybe more random than that not? Yes, yeah. Yeah, I hear. And for reasons that you brought up earlier, because there's not a ton of money in it, you need a lot of time to put into something to help them with their diabetes. Maybe they're not going to put that effort in to begin with. Right? Yeah. And some of them are high as a kite.

'Veronica' 53:57
Hopefully not many,

Scott Benner 53:59
what a great story. Franca. Thanks for coming on the show. This is terrific. I really do appreciate you doing this seriously, because my pleasure. First of all, no one listening should be like, Oh my god, I gotta go find out if my doctors you know, smacked out of their mind or not. I'm assuming most of them aren't. But you know, what? Day drinking, you know, alcoholism, functional alcoholics. Definitely a thing. You know, people using drugs to get through their days is a is definitely a thing. And why would it not also include doctors, I guess? Yeah. Doctors aren't immune from. Right. So just another one of those things you'd like to imagine. isn't happening. Yeah, like I get it. When I'm going to get new tires and the kid at the tire place is stoned. I'm like, Okay, I understand it like it's okay. He'll be able to get the lug nuts off. I'm alright with this. You just don't think about it. And you don't I mean, like I know the kid getting the carts at the grocery store is just a little high. I'm okay. Yeah. Yeah. Like I understand that I get oh well. I'll help. I appreciate you doing this very much. Is there anything we left out that we should have talked about that we didn't?

'Veronica' 55:04
I think the other thing I'm I want the whole world to know is that it's not a test. It's just a check. We're not testing blood sugar, it is not pass or fail. It is just information. And it is information about what's happened in the past. The only thing you can do is react and change going forward. You cannot change the past. So keep looking forward. You know, now we've got the arrows with the CGM. And that's great. Can we please stop calling it a test is the verbiage bother you that much to gauge? It really? Does

Scott Benner 55:40
he tell me why?

'Veronica' 55:43
Because it's not pass fail. And I feel like probably I've been called a bad diabetic too many times. And you heard me say it earlier. There's no bad diabetics, we're all trying to do the best we can. And for the most part, the ones that are not doing real well haven't been properly educated by their doctors, and there are a few out there that don't care, don't give a rip. And that's on them. That is their choice. There's no need to shame them for that choice. Like that is on them. Yeah. That is not your responsibility. It's like, if they want to live that way, they're gonna live that way.

Scott Benner 56:23
Is that something you take on yourself, though? Because like, I don't know, I don't own a pool. But if he I know somebody who does, and you have to test your pool water. Now nobody's thinking like, Oh, I'm gonna test my pool water to see if I've passed or I've failed. Like, is that? Are we just not commingling thoughts? Like, I get the idea. I know, you don't want to be judged every five seconds. And that a number is just data. And I completely agree with you. But I mean, if someone were to call it test your blood sugar, like, why would that set you off? Is that because of past experiences you've had you think? Probably.

'Veronica' 56:56
And I just I think that words matter and how we talk about it matters that I don't want to feel like I have to do 10 tests a day if I'm not wearing a CGM. And I feel bad for people that have test anxiety. What's funny is, as I'm in school, I love the tests. I want to know where I'm at. I don't want to know if my blood sugar but hey, when I'm at school, yeah, I want to know how I'm doing. But

Scott Benner 57:23
also Veronica, you know, there are other people who aren't bothered by the word, right? No,

'Veronica' 57:27
I know, there aren't. But I do. I feel bad for anybody who hasn't really thought through it and processed it and start seeing that, oh, it's a test. Oh, I got another I got a test again.

Scott Benner 57:40
Can I ask a question? If I say to you, hey, Veronica, you gotta check your blood sugar. And then you check it? And then it's 250. That doesn't feel like a failure to you? Because I said check in not test, you know, saying, like, what's the difference? I don't understand that. It feels like just a word to me. But I don't know. Because I also I'm not in your position,

'Veronica' 57:57
I think because it's not pass fail. Like it's not, there's no grade, it's you're just checking to see the status.

Scott Benner 58:06
It's not, you can't just be testing to see the status. So yeah, I don't know. I feel like I'm coming off as difficult. I don't mean to be because I completely agree with you. So yeah,

'Veronica' 58:16
I'm a verbal processor. And I haven't gotten there yet. And you're asking the right questions to get me there. I'm

Scott Benner 58:21
just I don't know, I it just bothers me. It feels like to me that something happened to you at some point. And now you have an unkind relationship with the word in this context. But I mean, there are plenty people who don't. And so that's where we get into this weird thing with like, you see people online, like don't call it diet, like don't say, I'm diabetic. That was the thing for awhile, people like, don't call me diabetic. I'm not diabetic, I have diabetes. I gotta be honest with you. I don't see the difference. So like, you don't I mean, well,

'Veronica' 58:50
I will say that my husband worked with children with autism for a while, and he's like, they are not autistic, that does not define them. I am not defined by my diabetes. So I occasionally I will say, I'm diabetic. But typically, no, I've lived with diabetes for a hell a long time, and I'm over it.

Scott Benner 59:11
I think a lot of those words come down to like intent when the person speaking it to me like, I mean, I can, I can imagine a way where I could call somebody a diabetic in a pejorative way. But to just say that person is a diabetic. I don't know. I mean, I don't know. Like, I am not sure just because I don't know how to like feel like I've been overweight in my life. If you would have said to me, Scott's fat, I would have been like, yeah, I am. You know what I mean? Like, if you were to call me a fat person, I would have said, Oh, that's accurate. I mean, I wouldn't have liked it. You don't I mean,

'Veronica' 59:47
I think there's some stigmas with diabetes that don't need to be there. And and some of those stigmas are more about type two but they get placed on type one. Okay. I'm so sick to death of people telling me what I can and can't eat. And that

Scott Benner 1:00:03
happens in your life the hell up. Yeah. People tell you, you shouldn't be eating something. Yeah, you can't eat that.

'Veronica' 1:00:09
You're diabetic? No, first of all, I

Scott Benner 1:00:12
am a diet badass. And secondly, you're not my doctor. So shut up, do not take them as verbalizing their thoughts. Like you can't eat that. I always expect is them in their brain going, Oh, I didn't think she could eat that she has diabetes, and then it comes out of their mouth that way.

'Veronica' 1:00:32
So I use it as an opportunity to educate and say, No, really, I can I just take a little more insulin for it. And so I do use it as an opportunity to educate but sometimes I do get snarky because, well, it's a pain

Scott Benner 1:00:49
in the ass to hear over and over again. That's Oh, yeah, obvious. Yeah. It's not your job to educate every person who notices you. Right? You know, eating. I mean, I take all your points. I am just playing devil's I hope people know I'm playing devil's advocate. But uh, yeah, get up. Get a note here from somebody's like, it's, you know,

'Veronica' 1:01:04
I love playing devil's. So I appreciate that. Yeah. You know, one of the ways I've described my diabetes is that the first 10 years I fought against it the second 10 years, I was like, Oh, I guess I was kind of resigned to it. Now. I'm leaning into it. And I'm making diabetes, my bitch. And I'm using it to encourage other people for you. That's excellent. So I'm trying, I'm trying. Yeah, no, I'm

Scott Benner 1:01:24
glad you got to that part. Seriously. What do you think stopped you from getting to it quicker.

'Veronica' 1:01:29
So I've blamed the diabetes on a lot. But I honestly now and thinking that the ADHD was, was like a legitimate thing. And I, I had no plans for my future. After high school. I didn't go to college right away. So I had a teacher in high school that said, she was the music teacher, and she was like, I will play at your wedding. If you accomplish a number of things before you get married. You need to travel the world, and you need to have a college degree. And you something else, I don't know what you need to know the person at least a year or two or something. And so I've like, I took that seriously. And I I traveled the world. Before I was 15. I didn't get my college degree ever. She still played in my wedding. So diabetes has not been a it's a weird dichotomy here. It's not been a limitation to me. But it has been such a limitation to me. I've limited myself because of it. But early on, I didn't when I was 14, I said, Hey, Mom and Dad, I saw this thing in this magazine about a mission trip. Can I do that? And they were like, sure if they accept you. And if you can raise the money, and I think they thought I wouldn't get accepted into this mission organization. Well, when I was 14, I went to the Amazon rainforest for eight weeks with a bunch of people my parents didn't know us. When I was 15. I went around the world, most of it on the Trans Siberian Express, flew from the US to Ireland to Moscow, took the train all the way across Siberia, even went in a Siberian prison at one point. And then on the other side from Qatar. It was Khabarovsk flew to Anchorage, to San Francisco and back to the east coast. But while you're doing all that you're not managing your type one really soon. Okay, high school, early years were were okay. It wasn't until I mean, later in high school, that was early high school later in high school, it started to fall apart. First college I went to I ended up in DKA. And, and the doctor in that other state was like, We need to get you on an insulin pump. And I went back to my home state and my regular endo was like, No, you don't have good enough control. And so I went through that for a couple of years until I moved away from my hometown, you know, 10 states away or something, and ended up in DKA, twice in six months. Got myself an endo. Who was like, let's get you on a pump yesterday. And then, and then I got married. And now I'm stuck happily stuck, but stuck nonetheless, in this state, and with a bunch, you know, I've had great endos and not so great. And I was here in my current state, and it's been a

Scott Benner 1:04:23
dream. Well, it's quite a journey. I appreciate your sharing it with us very much. My pleasure, sincerely. Thank you. Hold on for me for one second. Okay, absolutely.

I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear. Get ever since. A huge thanks to Omni pod, not just my longest sponsor, but my first one Omni pod.com/juice box if you love the podcast and you love tubeless insulin pumps, this link is for you. Omni pod.com/juice Box A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med the Juicebox Podcast is full of so many series that you want and need afterdark s gotten Jenny algorithm pumping bold beginnings defining diabetes the finding thyroid, the diabetes Pro Tip series for type one, the diabetes variable series mental wellness type two diabetes pro tip, how we eat. Oh my goodness, there's so much at juicebox podcast.com. Head up into that menu and pick around. And if you're in the private Facebook group, just go to the feature tab for lists upon lists of all of the series. always free. Always helpful. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1148 Grand Rounds: Diabetes Management

Scott and Jenny discuss proper type 1 diabetes management concepts.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1148 of the Juicebox Podcast.

Jenny's back for another grand rounds episode and today she and I are going to talk about how doctors should be thinking about diabetes management, how to talk to you about using insulin, and so much more. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you'd like to help with type one diabetes research right from the comfort of your home, it's easy to do go to T one D exchange.org/juicebox. and complete the survey. That's it, it takes like 10 minutes. We're looking for US residents who have type one diabetes, or are the caregivers of someone with type one of specific and special note. men and men of color were boys or boys of color. Difficult to get that data. The T one D exchange thinks they could really help people if they had it. If you fit any of these categories, I'm talking about men, boys, girls, ladies have type one, you're the parent of somebody filling out that survey is a great way to help. And it's a great way to help the podcast, it also might end up helping you t one D exchange.org/juicebox. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next one.com/juice box. This show is sponsored today by the glucagon that my daughter carries G voc hypo pen, find out more at G voc glucagon.com. Forward slash juice box. So today for the Grand Rounds series, we're going to talk about management. That's our that's our our header. And Rod topic. Well, and there's a lot here. So indeed, it is a lot of feedback from people, a lot of feedback from people a lot of notes that you and I made on this document back home, we're talking about doing this. A couple of things. Why don't we just start with a little bit of feedback, and we'll work our way into it. Well, I wish my doctor would have told me that staying high for long periods is just as dangerous as a low. Yeah. So that's education. Right? Like, that's, that's understanding big picture. And whether doctors know it or not, this don't. I was about to say don't have a seizure idea, which is something I really don't want anybody to do. Right? I didn't want to sound like I was minimizing it. But this this better high than low idea. I understand why they might say it initially. But you have to tell people, the rest of that story. And why high and low is bad, why stability is what they're looking for how to get through stability, because just telling them better high than low, I think leads them down the wrong path that that that's difficult to get back from mainly

Jennifer Smith, CDE 3:27
because there's not enough there's not follow up to it is what that really leads to, they are given a directive of better high than low initially. And you know what? Maybe Okay, right now, but define that, give them a week from now once we're seeing how your insulin is working, once we see where numbers really are, once we see how you're reacting to the current doses and we make some other adjustments. We will talk further about this, right? Because initially, you may actually, I mean it is there's a math equation to figuring out initial starting doses for any age and person. But it's still just a starting place. And it's still not as precise as it eventually will get. So sure, a little higher right now, let's see how things go. We're going to touch base in a week or in a couple of days. We're going to look at this and we're going to say okay, now we can nudge that high. We don't want to stay high, long term down the road. Right now. We're just going to keep things from here to here. Maybe the target range is wide right now. Narrow it when you have follow up and also put that into you know your your notes about what was discussed. We defined blood sugar target range here to here so that whoever is the follow up physician or clinician knows what you've talked about. They can easily see it in the medical record and then that doctor or caregiver can clean that up. Yeah, can help to define that further for you. But when you give a blanket statement that sticks

Scott Benner 5:09
Yeah, it also makes the next physician, not just the patient, but the next physician leery about changing what's happening right now. Right? Right. Right. They think this is this was for a reason somebody told you to keep your blood sugar at 180 all the time. And you can explain to them no, that's not the case. Because somebody didn't tell you. No, that's not the case. So, right. A lot of this series, I think is about, it's about not just saying the first thing that you that you think to say, but giving it real context and an explanation. This is what we're going to do. This is about the timeframe we're going to do it in, this is why it's important. You just can't forget about it and say, Oh, he said better high than low. And then you go on, you know, from their emergency situation, to you know, a GP, then the GP finally gets you to an endo. And then the endo gets there. And this, oh, everybody's got this person's target set at 180. They might think that's on purpose, because you can't handle it. Or maybe you had lows before they'll make assumptions. And you know, these assumptions are what killed everybody. Right? Yeah. But this is how it comes out. I wish my doctor would have told me that saying hi, for long periods is just as dangerous as a low

Jennifer Smith, CDE 6:23
end for this person, it might have been that there wasn't enough follow up then. Or maybe they didn't follow up with somebody who could have helped them put the targets a little tighter together, right? Maybe they also didn't know enough to ask, Hey, I was told initially, the higher targets are okay that I shouldn't necessarily live there. But if I touch to 50, after every meal, and four hours later, it comes back down. That must be okay. Right, because that's what I was told it. It takes I think, you know, diabetes, especially is it's an evolving sort of trend of discussion, where this is where I am, this is the scenario, this is the really important stuff to focus on now. Okay, a month from now, a week from now, whatever, you're very likely going to be in a different place, you're ready to get more information, you're ready to ask more questions. And the doctor should also sort of move down that path with you, if you're not bringing up that they should be bringing it up and saying, Well, you're here. And everything looks safe, right? It looks good. But you could be here, right? Let's try this. This is why and that explanation to the why is really important. It's

Scott Benner 7:37
the nuance of the conversation. Like you can tell somebody, it's not wrong to say to somebody, Hey, if your blood sugar shot to 250 and came back down and leveled out again, that's fine. Not every time, you know, but not every meal. Because if you want now you tell me that's okay. And what you're probably trying to do is, is give a little bit of comfort. You don't I mean, like, Hey, don't don't kill yourself if stress about Yeah, if it jumps up one time it jumps back down, let you you know, that's okay, let it go. But not, once you tell them it's okay. Then breakfast jumps up lunch jumps up, dinner jumps up, a snack jumps up, they get high overnight, but it comes back down three hours later. And before you know it, that's an eight a one C? Yeah, you know, and they in their head, they're like, Well, the doctor said, It's okay, if it goes up and it comes back down again, they don't understand the big picture. Listen, right. Most people don't understand the big picture of health. I was just talking to a nurse on another recording recently. It's not out yet. And she said one of the most shocking things about becoming a nurse was learning how little people knew about their own body. Like she called it. Jenny's making the face. Yeah, like shocking how bad it is. And it led me to say, I saw somebody eating nachos with a bowl full of queso the other day and I saw the bowl, like the size of a softball full of liquid cheese. And I thought you're not supposed to consume that in a year. Right? Yes, yeah, you know, like, and here you are, you know, in one sitting, and then metabolic issues come up, which you don't see right away and are hard to diagnose. And they end up looking like I get headaches all the time, or my knees always hurt or why does my stomach hurt? Or how come I don't poop? Right? Like it's because it's and then you're off to the races. And before you know it your blood sugars are hard to deal with, you have all kinds of other underlying issues. And they don't come to the surface until they come to the surface in a very aggressive way with like some specific problem. And when we're talking about people with diabetes, we're talking about renal and cardiac and your eyes and absolutely big stuff, you know, not just go on a diet for six months and this will all work itself out. You know, what

Jennifer Smith, CDE 9:44
you said initially is 100% the case unless you have any type of biology avenue of education, you really are left in the dark about what your body is supposed to be able to do. How does it function when I do this, this is what my body does with this, right? And I, one of like my best examples of that was years ago working just as a dietitian in education specifically in diet in gestational diabetes. A woman had come in to me, and we're talking about kind of her eating and how that impacted blood sugar. And I said, Well, you know what, I don't see like, a lot of fresh stuff. And I said, I don't see any fruit at all. And she's like, No, no, I eat fruit every day for breakfast. And I was like, Oh, we didn't mention that. You know, she's like, Yeah, I did ice. It's right here. I eat Froot Loops. i She was not kidding. She was not joking, which means that as an adult age where she was long term, she never knew that Froot Loops don't count as a fruit. Like

Scott Benner 10:50
me, I out myself for a second. I once said to my wife, I was half joking but contour next one.com/juice box, that's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters. I'll click on the Next Gen and you're gonna get more information. It's easy to use and highly accurate smartlight provides a simple understanding of your blood glucose levels. And of course with Second Chance sampling technology, you can save money with fewer wasted test strips, as if all that wasn't enough the contour next gen also has a compatible app for an easy way to share and see your blood glucose results contour next one.com/juicebox And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this download a coupon? Oh, receive a free Contour Next One blood glucose meter. Do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G voc hypo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Tchibo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information. But I don't think I was completely joking. She's like you don't get enough vegetables. I ate veggie sticks the other day and she goes Scott, those are potato chips. There's carrots in them.

Jennifer Smith, CDE 13:28
Yeah. I mean, and there are a little bit of like a humorous component to that. But I was just like I came home and I said to my husband, he's like, No, he's like she was joke. I was like, no, no,

Scott Benner 13:39
I told you before when my mom looked pre diabetic, a handful years ago, and a doctor told her to change her diet. She put together a diet that was worse than the one she was eating. Yeah. And she was trying trying to eat something that would follow along with what he was saying. Didn't people just don't know. So it's not your fault. But the doctor needs to know that that's the situation. Yeah, you know. So this next person says there are ways to have a lower more healthy a one see there being kind here about the podcast, such as being bold with insulin, let us know that this is possible and help us to achieve better agencies. Please don't shame us for falling short, but do encourage us to do better. I see this a lot, right. Like nobody wants to tell somebody they're not doing right. Well, right. became a social thing for a while. You know what I mean? Like nobody wants nobody wants to tell you the truth. Sometimes

Jennifer Smith, CDE 14:34
I feel people are worried. On the end of professional people are worried about creating like a shame type of explanation. When really that's, that's your job is to tell somebody when they're not healthy. That's that's your job, right? You didn't go into health care, to tell people to keep eating what they're eating or to keep, you know, not doing what they're not doing. You're

Scott Benner 14:57
not there to make friends and know that Yeah, you're and I get that I would listen, I would bet the argument back would be, if I push these people, they're not going to come back again. And to that, I might say, least you told them the truth. Right? You know, like, now it's on them, at least, you know, but keeping it from them or pretending they're going to do the right thing. That's not helping anybody. That's just mean, that's, that's you're lying, and they're lying. And we all know each other's lying. And none of us are saying anything about it. It's weird, right? You know, I

Jennifer Smith, CDE 15:26
see, I see questions often still, in this sort of day that we're in with technology, I still see questions about why people are. And it goes right along with this management and even like, target range for blood sugar and whatever. Why are we explaining blood sugar targets that are outside of the realm of what somebody without diabetes? Right? Why? Why are we saying that? A 200, blood sugar, a 250, that's safe. That's okay. You can come up here, you can kind of settle back down, etcetera. You know, the human body does not do that without diabetes. So why are we constantly telling people that it's okay for you to be in this really wide range, and then down the road, their expectation comes to be? Well, I stuck within these targets. And now I have problems with my eyes, or now I can't feel my feet. And I did what I was told. I was told this is okay.

Scott Benner 16:27
Yeah, no, I think it's got something to do with the physicians either not understanding it themselves, the mechanics of getting to those other blood sugars, or they've seen so many people fail at it that they think it's not possible. So why am I going to give them a target, they can't reach at least I'll give them one that they can, they can get but, but that's where this this person here says learn how to communicate diabetes, those things, suggestions. So often, we're told to do something, but not given a reason why? And then you and I made a note after that, that said, that says don't just give us a fish. Teach us how to fish. And right. Yeah, right. Yeah,

Jennifer Smith, CDE 17:03
absolutely. I think you had a thought. Let me bring it back into my brain. Like right there on the tip of my tongue. It'll come back to me.

Scott Benner 17:12
It's okay. Well, I think we got thrown off when your cat's whiskers came into the camera first.

Jennifer Smith, CDE 17:16
Yes, I sorry. I was gonna comment. And I was like, No, it's okay. I know she was

Scott Benner 17:21
you were like you I say something about that or let it go? Yes. Sorry. On the fault, though, I stepped over you. You had a look on your face. Like you were gonna say something. And I said that it's okay. Don't worry about it. I wish it diagnosis. They told us that what we learned at the beginning is foundational. And there are many things to learn. Moving forward for best management like Pre-Bolus and glycemic impact load bolusing for fat and protein, being aggressive when aggressive isn't necessary. Also, I wish they would have emphasized emphasize that ratios and basil will change and what numbers we get aren't set in stone. Okay, so this becomes another big problem. You know, you you set somebody's this happened to me. I remember the doctor was saying what's Arden's insulin to carb ratio. And when I pulled it up, it was like one unit that like, I don't know, like some insanely large number 300 carbs or something like that, because she was diagnosed when she was so little. But we were like, years later, and no one had ever changed it. Oh, and I didn't know anything about it back then. So I'm like, Oh, she's having all these high blood sugars all the time. And I'm like, I'm having a lot of trouble with meals, and I can't figure it out, back then I wasn't the guy who was like, Oh, just do this. I went back to the doctor, and I was like, I don't know what to do. And they pulled that setting out. They're like, Oh, and it was like it was off by like, I think she was one to 100. And it was set at one to three, she was using two thirds, too little insulin at every for every carb. So, you know,

Jennifer Smith, CDE 18:46
that actually, it kind of made me think of what I was going to. What I was gonna say is that, I think that in, at least initially, and maybe even for somebody who has had diabetes a long time, and now is really coming in with a set of questions. What it boils down to is explaining that this initial information is just that it's a baseline to start with, and navigating diabetes. I wish people would just be honest, and say it's not easy. It can get along the way of learning, you experience a hoz Oh, well, that totally makes sense, right? Or, gosh, this definitely can be built in now. So they're, they're stepping stones, if you will, to management. But as you just said, There's not just a start here, dose this there is again, kind of evolving changes. And that growth has to happen in your understanding, but how you understand it needs to be what comes from the clinical team that's helping you so they should explain to you that this isn't simply just put the insulin in and eat the food, right? That's not how simple this is.

Scott Benner 19:57
Yeah, I remember a doctor once saying when our was younger Wait, oh, she gets hormones like, oh wait, do you see the female hormones? Oh, and I was like, what she was like, wait a minute, UAH context? Is there any context? You know, oh, hormones make it harder. And I'm like, and, and you don't you mean like, though I figured it out between that and, and when it actually happened for myself, but nobody ever likes in that time no one ever stepped up and said, Are you bolusing? differently? Do you notice any strategies that help or hurt? Or, you know, are there times of the month that are different than others? That conversation never happened? Just oh my gosh, you should see Wait, do you see what happens? And I spent years going like, oh, like,

Jennifer Smith, CDE 20:41
like, I'm worried I wonder what's gonna happen? Yeah. And as if she didn't have hormones. age that she was,

Scott Benner 20:48
she was growing, I'm sure she had growth hormones. So at the very end others, this person says, this is kind of funny. bolusing for fat and protein impacts is a type one diabetic should not be considered an advanced topic. And I thought, but that's really true. It's very, very true. You cannot, you can gather up 100 People with type one diabetes and ask them, you know, what is your endocrinologist taught you about dosing for the impacts of fat or protein? They're not gonna, I mean, two people are gonna say somebody had mentioned that to them, you know? Correct. And yet it throws off every meal, almost every meal of every day and someone's management for 24 hours, that turns into a week that turns into a month. And it's it can be at the core of the whole thing the other day, Arden. She's weighed school. And she said, I did get a text from her. Hey, I had to stop at a drive thru on the way back. I'm, you know, I had to grab some DT amount of time. I said, What do you get? She said, I got Chick fil A. And I said, Okay, 45 minutes from now your blood sugar is gonna go up. And I was like, Don't forget. So you know. And by the way, you know what she did? She forgot. And but I was, she was probably driving. Well, she was now at another place doing this homework. And then she had to get into a class and stuff like that. And I said to her, I'm like, I'm like, okay, look, just look at your algorithm. Is it suggesting any insulin? And she said, Yes, I was like, I think you should put it in. You know, because the algorithm was trying to fight. It was trying to fight the fight, but it wasn't going to because it wasn't compensating for the she didn't put fat into the she didn't it didn't know what it was trying to fight. Didn't know what I was doing. Just like this morning, by the way. She thought she lost her ID. Oh, so like, I get this call. I'm like, why did that happen? This is gonna happen a couple of times, I'm pretty sure. Yeah. But while she's searching for the ID and doing the math in her head that she doesn't leave five minutes from now she's gonna be late. And if she's late, and she misses a class, and she only gets the missed so many. And she says I'm watching her blood sugar, it is just going up. It just went from 100 to 120 to 130 to 140 that he got an arrow straight up from trying to find her ideal stress. Yeah, from the stress of it. Oh, Doctor, I gotta tell you that. They're gonna say something like, oh, the mornings, huh? Yeah. Oh, no mornings. They're hard. Thanks a lot. Right. And

Jennifer Smith, CDE 23:13
that will be as we talked about before, that'll be one of the fingerpointing on the records. We'll see what happened here. Yeah. No, it was probably in school one

Scott Benner 23:25
month from now if you ask garden, what happened there, she's not going to say I lost my ID thought I was going to be late and got upset. Like she's gonna I don't know what this is, you know, so. But all this goes back to Tools. Like give me this person says, give me the correct tools give me parameters and instructions. Let me know I could probably do this, if I had these these things in place, right. And to what your point is, I always say, it's experiences. Like you have to have them over and over and over again before they just start becoming not just like second nature, but they make sense to you. Like out of nowhere, something happens you I know what to do? Yes. As soon as she drove away, like, you know, she had her ID this morning, and she left. I thought she needs a temporary Basal increase. Like I don't care if she's on an algorithm or not like right now she needs a Temp Basal increase this algorithm is not it doesn't know there's an impact here. It's it's changed rising as if she ate food. And it has not been told there's any food there. So we did that. And it came back down pretty quickly. Yeah.

Jennifer Smith, CDE 24:25
Good example I have of like those lived experiences. You can provide all the information possible. And then when you get into like, from my angle of providing education, and give you scenarios, things that might happen, but until they really happen, you have nothing to apply that to and you may need to dig deep and think about it right? A good example is somebody I work with, who had emailed me about a scenario and emailed me just to say, You know what, everything that I've learned, I knew how to work around I found it. And I think I did the right thing. Yeah. And 100%, this person had done the right thing, right? blood sugars that were doing something that shouldn't have been happening based on everything else that had led up to that point. And what did the person do? They change their site, they changed their, their insulin, and it all navigated back down. But without some lived experience and some information pointing to Hey, If this, then this, right, right, they're gonna throw their hands up and be like, I don't know what it was not

Scott Benner 25:31
make that change. I also, you know, that's true. Because oftentimes, you'll see people changing out sites, when it's not the problem, right? When their settings are bad, and they're constantly the pump doesn't work, the pump doesn't work. They over and over, and I, sometimes I online, I'm like, stop there, like, I've changed the pump three times, like, Stop changing the pump. Just stop. It's not your site, right? Like, your settings are bad. Like, we're your settings are great, but something's happening right now. And your settings aren't up for the challenge of what's happening today. You know, like, it's, again, lived experiences. That's how you'll figure this all out. I like this, this feedback here, give me all of the options, not just the ones that you think are best or better or efficient. I would like to make my own decisions, and then craft my own ecosystem of how I deal with this. I think that's a great point. You know, there's more than one way to do this. And everybody's brain doesn't click with the way you say it one time, right? That just you have to give people the autonomy to autonomy is such a big part of this. Because if they don't have that, they don't have all the ideas, and they can pick and choose from it make their own tool belt. That's a problem. But if they don't feel like they can make changes on their own, that's also a problem. Like, that's a big, big problem for people with type one diabetes, the ones that don't feel comfortable, or don't feel like it's their job to make changes to settings. They're the ones I see struggle, the most long term is adults. Do you agree?

Jennifer Smith, CDE 27:05
Yes, absolutely. Because they from an early on diagnosis, whether it was childhood, and that's how their parents navigated, because that's what they were taught how to do. And then they move into adulthood, managing that way, really only following up with the doctor every six months. And that's when something gets shifted and changed and not not really knowing that they're in the driver's seat. 24/7, between that 1520 minute visit with the endo every six months, right, you are the Navigator. But unfortunately, if you don't tell somebody, it's almost like giving the Okay, many people with this type of a, you know, a use of something that supplies like insulin, right? You really have to be directive and say, You know what, I'm going to give you these starting places. And here are some pointers for adjusting. I'm happy if you adjust. In fact, give me feedback when you try and adjustments so I can help you behind the scenes if there's you know, communication with an electronic record or something like that. But you do you have to almost give the okay to people. Otherwise, they may also come back to the office and not provide feedback that they've been tweaking things on their own, because they may feel like they're gonna get their hand slapped. Yeah.

Scott Benner 28:20
Oh, that's definitely happening. Right? Yeah, people are definitely lying. They're always like, I can't I can't let my doctor catch me doing this. And when people say that, to me, I'm like, What are you talking about? Like, oh, I want to make an adjustment to the basil, but I'm afraid I'm gonna get in trouble in trouble, like, so. Ironically, you're not in trouble, quote, unquote, for the seven and a half a one C, but you wouldn't be in trouble for putting the Basal up point three an hour and making it a sentence? fascinate, right. Yeah,

Jennifer Smith, CDE 28:45
absolutely. And insulin, interestingly, is, I think it's, I can't think of any other medications on the market, that people self adjust, right? Like you don't go to your cardiologist and they give you blood pressure medication, you're like, today, I think I'm going to take two of these tablets with you. It's gonna happen, right? Like insulin is one of those. It's I think it's the only thing that really, it does require you to look at your own information and make adjustments based on what you're seeing and where you want to end up. What is the target you're aiming for? What are you trying to get to, things aren't working?

Scott Benner 29:23
It's also interesting where the line gets drawn, and I had a, I had a root canal go bad. It was like 11 years old. So I was pretty happy. It lasted that long. So I'd have changed out right. And when he got in there, he's like, Hey, there's like a little bit of an infection there. You know, this is really going to hurt tomorrow. Let me give you a prescription for a pain medication. He said, The one I'm going to write for you is highly addictive. He said, so you have to be careful. And I was like, I'm gonna go with Advil if you don't mind, right? And he goes, No, no, you should probably take this script because this is gonna be a problem, blah, blah. And I was like, I'm good. I don't I don't need your script. All right. By the way, I didn't even take an Advil when it was over the guy said, great dentist and did a great job. But he was so willing to be like here, would you like a week's worth of narcotics? Because I dug around in your gum for an hour. And I was like, and I'm like, Wow, look how easily he would have given that to me. Yeah, but then you go ask an endocrinologist. Hey, you know, wouldn't it be cool if that lady could change your basil and they can't handle that? Right? Again, and all that, but you can give them oxy. I was like, right. All right. Can we make sense once in a while? No. All right. This person says, Can you give me your medical opinion, please don't parrot what you're reading, ah, in this example, as their kid was doing a six for a lot of years. And then it rose up. And the doctor went, That's okay. It's still within target. And they're basically just telling them like what the ADA said, like ADA says sevens fine. This is fine. And like, so then that takes the onus away to do better again, it's again, it's just like, oh, whatever, you're fine. It's like, what's your blood pressure supposed to be? I don't know these things. 120 over something. It's

Jennifer Smith, CDE 31:06
well under 140. And it's like, what let's call it like, 130? Over 80. Okay, right. But in anything kind of, you know, within that sort of the range, but just your blood

Scott Benner 31:20
pressure was 150 over 90 all the time. What a doctor guts. Alright, it's cool. Not bad. No, no,

Jennifer Smith, CDE 31:25
they shouldn't.

Scott Benner 31:29
But you I saw you getting upset earlier talking about those column? 250s. Okay. You know what I mean? Like, that's the same thing. But you don't but that doesn't get seen that way. A cardiologist would never say that to you. an endocrinologist would say that to you all day long. Oh, just 250 it comes back down. You're fine. What? How am I gonna be in 20 years? Right? Yeah, yeah. What do you do you own a LASIK center or something like that. And you're thinking of getting into diabetes surgery to like, what are you trying to have happened to me here? And what and oh, sorry, I got upset. Now you can talk? No,

Jennifer Smith, CDE 32:04
I was gonna say and for the person who is a little bit more concerned about the lower blood sugars because of whatever fear that was instilled eons ago or whatever. Those numbers that are higher that they've been told are okay, even for lingering or you know, non lingering time periods, like a blip up and then it kind of comes back down. Eventually, they may get to feeling that they're safer. They're okay at those numbers, because in their mind 250 becomes okay, then all the time. Yes, not just the up and it comes back into what you define as the as the healthy brain to be re

Scott Benner 32:47
in range. Yeah, yeah. Especially with the thing that you don't feel. Listen, if your blood sugar's if you're a one sees rise slowly enough, you won't feel the impacts the physical impacts, your body is going to do a pretty good job of trying not to die and like what it was it this opens up blood vessels that like does all kinds of stuff, right? Like to try to like Yeah, yeah, yeah. To, to do that kind of stuff. So. So when you say it's okay, this person is slowly not becoming themselves anymore, they're altered mentally even, you don't even realize how foggy they are, they get used to that their body gets used to trying to exist like this no different than, you know, how you end up with an enlarged heart from smoking. Right? Right. Same idea. And, and yet, it's like, it's okay. It's okay. It's not okay. Like, it wouldn't be okay for you. If if you were that if the doctor, his blood sugar was 250 all the time. They'd be going like, we gotta fix this, you know, so I don't, I don't know why that that tired. It's just tired. It's lazy. Well,

Jennifer Smith, CDE 33:50
and again, with today's technology, and everything that we have, that it's got such tight ability to have alerts and alarms to keep people safe. And yes, technology can be a little weird and whatever. Yeah. But the majority of the time, what we have today with the alarms and the alerts, there's no reason to say that you can skirt up to this value as long as you're not under here. And as long as you're not hanging out in the low zone. And again, that's not even often very well defined. Yeah, what's too low? Where do you want to hit? What how long? Can I sit at what you're not telling me about a low number? What do I do it? Again, it's very like Flim

Scott Benner 34:32
Flam. It's nebulous. It really is. And by the way, even now with a within a non aggressive algorithm, like the eyelet, for example, that thing's still targeting probably under like 180 or 170. And you and I would be like, I mean, listen, it's a great tool, and I think it's going to help a lot of people but I wouldn't rely on my daughter and like, and that's 70 points better than telling somebody to 50s Okay, so I just need to understand speaking Understanding even though we had management under control and a consistent a onesie in the fives, my Endo, my son's endo said that we need to do less work, we need to do less work and let his numbers get higher. So as a one sees more like in the mid sixes or sevens, that whole you're trying too hard thing. I don't get that, like I really don't, because I know they don't want people to go crazy taking care of themselves. Right. But at some point, it does become second nature. Like you don't you mean you? It's a lot of hard work upfront for a lot of benefit long, long term. And

Jennifer Smith, CDE 35:39
I think in a visit where you the clinician, you're looking at that, let's call it a one C, which again, is not

Scott Benner 35:46
that shallow, I'm enraged and everything just

Jennifer Smith, CDE 35:48
not right. Are you asking more in depth about how much work it is taking? Because again, once you've been there for a while, as you said, it becomes more most of it becomes more second nature and you you're able to just navigate and keep that yeah, because you're doing what is pretty typical. And until or unless something changes with a growing child or a teen or something in adult life. For the most part, you're doing a good enough job. And that's when you have to define or ask the person. Gosh, how much are you checking? Yeah, right. If you can see that, you know, even in a visit somebody's like every two seconds, they're like looking at their numbers. There might be something more like on the mental angle to logical

Scott Benner 36:34
issue. Yeah, they might be under a lot of stress and pressure. But yeah, just assuming, you know, it really does it piggybacks on to this point that you added to here, you told me please bring it up, that seeing a good low a one C and assuming it's from like low blood sugars is a dangerous way to think as a doctor. This is Oh Jenny, this happens constantly the amount of people who listen to this podcast, then head off back to the doctor super excited, oh my god, I got my one seat down. It's nice. It's not that hard. Even I figured it out. Like turns out my settings were wrong. And the doctor yells at them, because they as soon as they see a number that's lower on that agency, they assume you've had multiple, you know, elongated lows to create that agency because they don't even know how to do it. It's such a unknown quantity to them, that they just assume that you've cheated the a one C test by having a lot of lows. Right? Yeah. And some of them won't listen, when people try to explain it to them, or the people are put their head down and you know, don't stick up for themselves. Right? It's a dangerous assumption to make. That's just because somebody has an A one C and the sixes are the five that must mean they're low all the time. My kids never low. Like, like, once in a great while. And even that means a drifting to 55 not like, you know, oh my god, what you know, Bob a lot most of the time her blood sugar's I don't know, it's not it's never usually under 70. Right, you know, honestly. So we have some bullet points that go through here at the end. So we'd like 10 minutes left. Yes, some of them are repetitive, so we might have to pick through them. And I'll skip over the ones I wished my doctor knew that tightly managing my son's blood sugar is far less stressful than living on the roller coaster. That's the thing you wouldn't know unless you lived with it. Correct? Like actually trying and working towards it is not as hard on you as the unknown aspect of it. You know, I think it's the difference between being told you're about to walk through a haunted house and not being told, you know, when stuffs just jumping out from around the corner all the time. You're always like, I don't know what's gonna happen next. Right. But yeah, working hard. I find this to be true for me. I don't know that everybody would find this to be true. I assume you do. Right? Like the work you do is, is worth what you get out of it? Absolutely.

Jennifer Smith, CDE 38:49
Yeah. 100%. Because I have, I have things that are known. And it makes the majority of my management, more like brushing my teeth. I don't think about the like, brush my teeth, whatever, right? It's not a thought. I have the time it's like out of my brain that you're putting the toothbrush on the brush and brushing and whatever. That's how I think about the majority of my management, unless something is really shifting stress or whatever, or I'm ill. But even that I've got enough enough years of experience to have a go to. Yeah, right. It's a starting point of oh, I can try to do this. And definitely it helps, right?

Scott Benner 39:32
So I always describe it as walking through a door. I don't like consciously think reach out, grab the knob, turn it pull. I just I just end up outside the door. And that's how diabetes works for you after a while and it is it becomes a muscle like I bet you Mike Tyson hasn't fought in a while but I bet you if you walked up to him and tried to slap him, I bet you his head would move pretty quick and he'd pop you right in the mouth. And so like and that's kind of how diabetes ends up working out. You don't know what to do. happening. But now you have all this experience and you know, blah, blah. This person says, Please tell people that they could actually go into decay with a normal blood sugar number. Yeah.

Jennifer Smith, CDE 40:11
That's so important. And where do you usually go? If you have ketones, and you're not feeling well, and you can't keep something down? Where are you going back to

Scott Benner 40:25
the hospital? That doesn't seem to know anything about helping me with my diabetes. And

Jennifer Smith, CDE 40:28
in that scenario, we actually, unfortunately had a really sort of a bad situation with one of our clinicians who her fiance had to advocate for her. And she's actually kind of corresponding with the hospital system, because of how they navigated it for she knew she was there for five hours, trying to get them to just give her fluids, her blood sugar was normal. They kept telling her she wasn't in detrimental need,

Scott Benner 40:59
right? Yeah, yeah. But she, I

Jennifer Smith, CDE 41:01
mean, and that's it. She knew she knew what she needed. I mean, sure, if you can stick your own IV. Oh,

Scott Benner 41:08
great. Imagine knowing so much about it that you know, you're in this trouble. This is the next need you have you need, you need IV fluids, then you take yourself to the right place, tell the people who are supposed to know and they're the ones who are going to be the impediment between you and not maybe dying. And that's by that happens quick. By the way. I forgot how nursing, how do they put it like it's not compatible with life, the acidity, right? That happens, right? The

Jennifer Smith, CDE 41:36
changes in all of your electrolytes and all of the things that should be being measured in the body. And ketones are one marker. And obviously, with diabetes, blood sugar would be technically another thing that they look at. But you know, when we talk about you, glycemic DKA, that's unfortunately, a level well above what most emergency departments even understand how to navigate Yeah. So

Scott Benner 42:01
I'll run through the rest of these here. Somebody said, Please, you should talk about the benefits of like mini glucagon injections for some people, especially with little kids who have trouble with lows. Please tell people about Pre-Bolus thing this woman says how we said this already today, protein and fat and how it impacts blood sugars and spikes. An explanation of insulin resistance would have been nice, when it happens, why it happens and how to manage it. So that's a person saying even if your settings work, when something else happens, I should know, like what to do next. Right? I wish my doctor knew that a one C wasn't everything. As soon as my doctor hears that my a one C is 6.8. I hear from them. You're doing great, don't worry. Meanwhile, I'm on a roller coaster all day long. I've at 50 blood sugars and 400 blood sugars on most days. And I have no idea where to begin. But they saw the 6.8 and said hey, you're doing great, right? Yeah, that's it. I wish they knew that there was no good reason to delay a person from getting a continuous glucose monitor. Within the hospital or as soon as after diagnosis as possible. I still want people to learn how to prick their fingers. But uh, CGM is such a, it's a next level, I think people deserve it. Who have type one diabetes. I think anybody using insulin deserves one. I agree. Same thing with pumps, please tell us about pumps sooner. This person says you should tell people about the podcast that's very nice. Whoever put that in here.

Jennifer Smith, CDE 43:31
I would say along with the pumps that I think it's gotten better crack. Most practices now have more knowledge about the multiple options that are on the market. But I still see practices that are more prone to offering or suggesting heavily one particular pump versus another. And what that often comes from his just their knowledge about that one particular system and they feel so strongly that it is the right one. Again, this is where individualization needs to come into the picture. So you need to know about everything to help the person pick the right one at the right time.

Scott Benner 44:10
I think in a world where you know, especially while we're making this episode, these episodes in a world where people are so under educated in the things that you're talking to other people about. I understand where this comes from, like, you know, I figured out how to use this one pump at least I can talk to them over the phone about where the settings at and stuff like that, but you are eliminating choice from people and not just their personal choice but choice that might allow them to find something that actually fits in their lifestyle better. Right. You know, I use I saw a little girl the other day online. So happy holding her tandem. Her ex too. Yeah, she's so thrilled, you know, and someone said, How come you didn't get her an omni pod? There wouldn't have been any tubes. And she said this just works better for her. And like, like for her personality. She said, good. Like, that's great. Yeah, but You shouldn't get like, because the, you know, I mean, because think of how that happens. Why are you? Why do you know one pump better than the other one? Right? I don't know, because the salesperson got there first. You know what I mean? Like, what the heck? Because back in the day before all the laws, they sent the doctors on better vacations. Yeah. Why we're doing this one. Jenny's laughing because that is what they used to do. That's not legal anymore. I'm sure that doesn't happen. Good lunches. That's it. They used to have like meetings, but they'd have them in Hawaii.

Jennifer Smith, CDE 45:31
Yeah. Or take you out for you know, good, like dinners where it was like a lunch and learn type of experience. Right?

Scott Benner 45:37
So yes, yeah, a bottle of bourbon and a steak. And all of a sudden, we're getting a pump.

Jennifer Smith, CDE 45:41
I remember when that all changed. Yeah.

Scott Benner 45:43
Yeah. Was that was actually a good law. I don't I don't have anything else for this one. So I'm just want to ask you, you know, for your kind of closing thoughts on how doctors should be talking about actual management to people? Yeah,

Jennifer Smith, CDE 45:55
I think we, I think we discussed the majority of what was I really do, especially along with all of the comments that people offered just in consideration. I think, you know, all of this communication and management and everything that we've talked about so far, it just it It boils down to individualizing. And really knowing starting place and where to move from there with somebody, because that starting place again, is just that you're going to have to move that person along and or help them move along because of the questions that they're bringing you. Maybe they're further along in understanding than you think they would be right so you have to meet them where their need is. Yeah,

Scott Benner 46:40
I know it sounds I always felt I always feel stupid saying cliche things but meet people where they are big deal. You know, you understanding what you're talking about. Big deal. You being able to communicate what you're talking about big deal and giving people a complete story. And not just snippets is is very, very important. Anyway, thank you for doing this with me. Thank you of course.

A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at contour next one.com/juice box. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash juicebox you spell that GVOKEGLUC AG o n.com. Forward slash juice box

if you are a loved one has been diagnosed with type one diabetes. The bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series, Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path of understanding. The series is made up of 24 episodes, and it begins at episode 698. In your podcast, or audio player. I'll list those episodes at the end of this to listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again are at Juicebox Podcast up in the menu or if you're in the private Facebook group. In the featured tab. The private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bold beginning series today and get started on your journey. Episode 698 defines the bowl beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies hit Episode Seven pick team we talked about fear of insulin in 719 the 1515 rule, Episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility. In episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears, hope and expectations. In episode 763 of the bowl beginning series, we talk about community 772 journaling, 776 technology and medical supplies. Episode Seven at treating low blood glucose, Episode 784. Dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out it will change your life when you support the Juicebox Podcast by clicking on the advertisers links you are helping to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use the device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com