#1150 Noki Pokey

March 12, 2024Scott Benner

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