#1267 I Only Cry on Mondays
Ally is 33 and the mother of a small child with T1D. She has an incredibly handsome husband.
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Scott Benner 0:11
Today I've got ally for you. She is the mother of a small child with type one. She also has another child, and she was pregnant with her third when we recorded this, her son was diagnosed right before his second birthday. Ali felt like she gets so much out of the Facebook group in the podcast that she wanted to add her voice, so someone else might be helped. 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 healthcare plan or becoming bold with insulin. If you have type one diabetes, or are the caregiver of someone with type one, and you're a US resident, please go to T one D exchange.org/juicebox. complete the survey. That's it. You'll be helping people with type one diabetes, you'll be helping yourself and you'll be helping me t one D exchange.org/juicebox. Go complete the survey takes about 10 minutes. My cozy Earth offer code goes back to 40% off in August. Go to cozy earth.com use the offer code juice box at checkout after August 1 to save 40% off of your entire order. Let's keep it 40% cozier What do you say? Today's episode of The Juicebox Podcast is sponsored by Omni pod and the Omni pod five. Learn more and get started today at Omni pod.com/juice box. This episode of The Juicebox Podcast is sponsored by Dexcom dexcom.com/juice. Box get the brand new Dexcom G seven with my link and get started today. This episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed. Ever since cgm.com/juice box.
Ally 2:10
My name is Ali and I am the mom of two kids. One of them is a three and a half year old with type one diabetes. And I'm actually pregnant with my third or so are very busy and yeah,
Scott Benner 2:25
Bolus is three and a half. Yes. You're like one of those people that gets a kitten and then keeps buying more kittens. What's the next one?
Ally 2:33
Funny story that was like kind of part of our diagnosis story. But she is eight months old now. Eight months and so yeah, this third one is definitely a surprise.
Scott Benner 2:43
Are you how pregnant are you?
Ally 2:46
I am eight weeks right? Or no? Nine weeks. Oh, really? Yeah.
Scott Benner 2:52
Those are called Irish twins. Are they not?
Ally 2:54
Yeah, they are.
Scott Benner 2:56
Are you Catholic?
Ally 2:57
I grew up Catholic actually. But no, not anymore.
Scott Benner 3:00
You know why they call them Irish twins, right? Yeah. I want to hear you say it but it's okay. Don't worry about it. My
Ally 3:07
husband and I was like we are having Irish twins did not ever think this was gonna be part of our plan. But here we are.
Scott Benner 3:14
Congratulations, or I'm sorry. I don't know where you fall on this. Thank you. Can you afford three children? Yeah, we're
Ally 3:22
gonna have to.
Scott Benner 3:23
That's not an answer to that question. Wow,
Ally 3:28
definitely a big shock.
Scott Benner 3:30
How old are you?
Ally 3:31
I am 33.
Scott Benner 3:32
Okay. Oh, I see what's so you're you're trying to get them in? Where was it your intention to make three babies?
Ally 3:38
We never were like, I guess we were kind of like maybe you know, one day if we have a third grade but we weren't like yes or no either way.
Scott Benner 3:48
Seven months from now, right? Yeah, definitely not.
Ally 3:51
This close together.
Scott Benner 3:52
How old your husband 34 C stable. He isn't leaving you or anything like that. yearns okay. Oh, is that oh yeah. Hard worker comes home late a little bit because he's working because he's at a bar stuff like that. We're all good.
Ally 4:09
We're all good there.
Scott Benner 4:11
Because I mean, I don't I'm doing the rough math here. This is I don't know unless there's major laws enacted I'm looking at $1.3 million to send three kids. So I know Yeah, and feeding them. I mean, what is the cheese gonna be at five gonna be two grand a week for two grand a month for food?
Ally 4:30
Oh my god. Yeah, consider juicer expensive. Yeah, it's all the fruit. It's all the wide. The fruit. Fruit is so much fruit and it's like, it just Yeah, it's expensive. All of its expensive. Especially like, you know, we do like some special foods for my son and then some, you know, just regular foods and yeah, it adds up.
Scott Benner 4:49
What's your favorite fruit?
Ally 4:51
Right now? Like any kind of fruit but I tell you what, my son eats all the fruit. He's the type one he eats fruit and like Got you every meal. When he was diagnosed? It was two weeks, three weeks before his second birthday.
Scott Benner 5:05
Okay for my money around Christmas or New Year's a mandarin, you can't go wrong. Oh, yeah, perfect timing. A few weeks before his second birthday. Yes, I see Arden was a few weeks after her second birthday. This is not a race. I'm just bringing it up. Wow. Any autoimmune in the family at all.
Ally 5:26
The only thing we have discovered is my mother in law has Hashimotos. But other than that, we haven't no type one. And then that's the only autoimmune that we've come across. We've you know, after talking to everyone in our families and stuff, just the Hashimotos Oh, well
Scott Benner 5:42
blame her then that's fine. Celiac. Nobody runs to the potty after they eat got a bipolar uncle somewhere?
Ally 5:50
Not that we know of.
Scott Benner 5:52
Okay. What else? How about psoriasis?
Ally 5:57
I think actually, my brother in law has psoriasis. I want to say
Scott Benner 6:04
that's all on me. Yeah,
Ally 6:05
I do think he does. I guess I'd have to double check that for sure. Thank
Scott Benner 6:08
you pick through this for a couple more minutes. Ali. I'll find six people on your husband's side of the family who have something going on. I guarantee one of them's got a bit a Lago but it's little you can't see it. And I know I'm just I'm like, You ever see that show house? No, I don't think you're young and you're really busy having sex. So you might not have seen it. But the he's just like a diagnosis. Way to diagnose Are you not a die agnostic doctor, but what's the how do you say that diagnose?
Ally 6:42
Yes, I know what you're talking about. Yes. I've seen like commercials for I've never watched it though.
Scott Benner 6:46
Okay, well, you should. I know. I mean, now I'm not telling you what to do. But you should. And I feel like that sometimes listening to the podcast, like because I'm making it I'm like, Oh, I wonder if this is happening like I get very it actually helps me my own life. Do you know I diagnose my brother while he was in the emergency room the other day was something that the hospital couldn't figure out. Oh my gosh, what was it over text messages? Hold on one second. I just need to text my wife something. Because the dog is barking. I'm just gonna say kill. There we go. So my brother goes into the hospital. And he has pain. Right side. You know could be gallbladder space like that spot there. Whatever. He's got type two diabetes say once. He's pretty good. He's on we go V. He goes in first day in a massive amount of pain. I should mention my brothers had gall stones, kidney stones. He knows pain he once had. Oh, I don't think he'd want me to tell people this. Oh, well. He once had a fissure. And he said if you want to know pain, you know, have a hole pop open near your butt. So he's been through pain. He knows real pain. He said this was terrible. This episode of The Juicebox Podcast is sponsored by the only six month were implantable CGM on the market. And it's very unique. So you go into an office, it's I've actually seen an insertion done online like a live one like, well, they recorded the entire videos less than eight minutes long. And they're talking most of the time the insertion took no time at all right? So you go into the office, they insert the sensor, now it's in there and working for six months, you go back six months later, they pop out that one put in another one, so two office visits a year to get really accurate and consistent CGM data that's neither here nor there for what I'm trying to say. So this thing's under your skin, right? And you then wear a transmitter overtop of it. Transmitters got this nice, gentle silicone adhesive that you change daily, so very little chance of having skin irritations. That's a plus. So you put the transmitter on it talks to your phone app tells you your blood sugar, your your alert, show arms, etc. But if you want to be discreet, for some reason, you take the transmitter off, just slip comes right off. No, like, you know, not like peeling at or having to rub off it. He's just kind of pops right off the silicone stuff really cool. You'll say it. And now you're ready for your big day. Whatever that day is. It could be a prom, or a wedding or just a moment when you don't want something hanging on your arm. The Eversense CGM allows you to do that without wasting a sensor because you just take the transmitter off and then when you're ready to use it again, you pop it back on. Maybe you just want to take a shower without rocking a sensor with a bar of soap. Just remove the transmitter and put it back on when you're ready. Ever since cgm.com/juice box, you really should check it out. Today's episode of The Juicebox Podcast is sponsored by Omni pod. And before I tell you about Omni pod, the device I'd like to tell you about Omni pod, the company I approached Omni pod in 2015 and ask them to buy an ad on a podcast that I hadn't even begun to make it because the podcast didn't have any listeners, all I could promise them was that I was going to try to help people living with type one diabetes. And that was enough for Omni pod. They bought their first ad. And I use that money to support myself while I was growing the Juicebox Podcast. You might even say that Omni pod is the firm foundation of the Juicebox Podcast. And it's actually the firm foundation of how my daughter manages her type one diabetes every day. Omni pod.com/juicebox whether you want the Omni pod five, or the Omni pod dash, using my link, lets Omni pod know what a good decision they made in 2015 and continue to make to this day. Omni pod is easy to use, easy to fill, easy to wear. And I know that because my daughter has been wearing one every day since she was four years old. And she will be 20 this year. There is not enough time in an ad for me to tell you everything that I know about Omni pod. But please take a look. Omni pod.com/juice box. I think Omni pod could be a good friend to you. Just like it has been to my daughter and my family. They medicate him for the pain, which you know, is nice. And then they go about doing their scans and they're this is the NATs and then tell him of course there's nothing wrong with you. We can't figure anything out. And they sent him home. Yeah. And the next day, he's back in that emergency room with even worsening pain. So now I'm texting with him. Hold on, I'm going back and forth. I'm asking my questions. It feels like he's on the podcast, but we're texting because I'm like, how about this? What about that, like, you know, that kind of stuff. And I figured out he had a slightly elevated white count the day before that they ignored. So I told him had them rerun the white count. Now the funny thing is, is he's sitting there and they're not doing anything for him. But if he says hey, run my bloodwork, again, to see if my white blood cells went back up, they go, Okay, it's like you're running. It's ridiculous. If he doesn't say anything, they'll medicate him again and treat him. But, you know, he says, you know, do this, please. white blood cell counts up again. Well, but we don't see anything wrong. So I said, I text him back and I said, here's what you do. Grab the nurse, say to the nurse, Hey, would it hurt anything if I got like an IV antibiotic just to address this high white blood cell count? And I said you'll put that in her head. And then she'll go back and mentioned it to the doctor, then he'll think it's his idea and give you the a&e biotics. That is exactly what happened. So now my brother is on the way to something and we start picking through it a little more. I go through some family history and I say to myself, I think he's got diverticulitis. So I say close that you think this could be diverticulitis because your mom's had it and ended up in the hospital in the similar pain floated to the nurse. The nurse goes back disappears for a while. An hour later, the doctor comes in as if on a white horse. And he says, I really think you have diverticulitis and I thought you motherfuckers don't know what you're doing. Medical School stole this man's money. Okay. So should nevertheless they get them all set up. You know, we think you have died. We think you have diverticulitis? No, I think he has diverticulitis. I told him to say it off handedly to the nurse so she could go back and tell him so him and his ego and his she diagnostics diagnosing him what's that word? skills come in and try to save the day. So it's three days later, my brother feels much better now.
Ally 13:30
Well, that's good. Yeah, like send me the bill for that diagnosis,
Scott Benner 13:33
put them on a nice diet for the diverticulitis and by the way while he was there on day one. This pissed me off more than anything. I almost said these motherfuckers and that I said it anyway, so I should have said it. These motherfuckers ally tell him to go off as soon as Empik The only thing keeping is a one c out of the sevens and in the fives. Yeah, cuz we heard it might give you pancreatitis. We heard what would you hear that on Joe Rogan? Could ya can you do your job? You know what I mean? Oh, Ali, look how upset I am. Let's get past that. Okay, so you're a little sweet child is is diagnosed before two years old. Can you walk me through that a bit?
Ally 14:13
Yeah, so it was like three weeks before his second birthday and we had it my husband took a trip to Vegas and I was like well that is part of the story. So I was like when we get back I think I'm going to try to start potty training him he just seemed ready it was a little bit early from just like you know other mom friends that I know and stuff and but I was like he just seems really ready for it. So I started potty training him and as I'm potty training, he is paying like I would started setting a timer and it was every 15 minutes like on the dot like sometimes even before the timer went off he would be had like a little potty setup for him and he would go pee and it was Like, it was a lot every single time and I was like, Wow, I'm never gonna be able to leave the house. This is, this is a lot like how are we ever gonna I can't even be live for more than 15 minutes from anything. So we're not even gonna be able to get out of that the neighborhood.
Scott Benner 15:13
Like where your mind Wait, you're like that will never leave the house again.
Ally 15:18
So I'm like, Okay, well maybe he just doesn't know how to hold it. We live in Texas. It was summer that was June. And we were outside like, I mean, he's a boy. So a lot of his potty training was outside. Like, we're just outside. He has no pants on just pee whenever
Scott Benner 15:33
I tell you something. The enormous amount of men who own their own property and maybe some who don't. I think if you polled them privately would tell you they pee in the backyard of their house. Oh, yeah. I would never do that alley. Except, you know, if I was in my backyard, I had to bake. Yeah.
Ally 15:53
And he still does it. So I was like, well, he's drinking a ton of water. It's Texas. It's June. It's 115 degrees out all the time. So he's probably thirsty and just paying a lot. So I gave it like, almost two weeks. I was texting my aunt, which I don't talk to her often. But she was I had posted something on Instagram. And she had responded and she was like, Oh, you're potty training him. And I texted her. And I was like, when you were potty training my cousin. He's a boy. Did he pee like every 15 minutes. And she immediately called me. And she was like, No, he didn't do that. Are you taking them to the pediatrician? And I was like, I actually had his like, checkups, even actually, it was ironically, like in a couple of days. And she was like, well, you should ask her about diabetes. And I was like, What do you mean, diabetes? He doesn't have diabetes? Like I had. I had no, like, I didn't know anything about diabetes.
Scott Benner 16:47
Where does Dr. House get all this information?
Ally 16:50
She works at a hospital. And yeah, so I think she just just No, no, I,
Scott Benner 16:56
I'm thankful for that. But by the way, does she work in medicine? Or does she work in the cafeteria?
Ally 17:00
I think she works at the front. She's not like she's not a nurse or a doctor or anything. I was gonna
Scott Benner 17:06
say if she was she wouldn't have been able to figure it out. Yeah. I
Ally 17:10
think it was just she thought it was weird that he was paying so much. And I did too. I was like, well, we have an appointment in a couple of days. I'll just ask her, the our pediatrician about it when we get there. And I thought I literally like texted my mom, I'm like, hey, we'll be home around this time. We're gonna like garden. I'm like, you meet me at the house when we're done with a pediatrician. So we get to the pediatricians office. And I told her that he you know, you're seeing a lot of drinking a lot of water. And luckily, our pediatrician at the time was she actually worked in the diabetes like community. She did like several camps. And so she knew a lot about type one diabetes. That was the first thing she did when we got there. She had him pee in a cup. And yeah, I could, as soon as she came back in the room, I could tell something was wrong. She was like, yeah, he has type one diabetes, you guys are going to need to go to the hospital right now. And I was like, like, right now. Like, can I go home and get my, like, get stuff first. Like, we don't have anything. I thought we I thought we were gonna go to the hospital and like, they were just gonna like check his vitals and tell us what to do and send us home. Like I still was very naive. I did not know that we would be be
Scott Benner 18:15
there. Did you think he had diabetes? And that's what they were gonna tell you. Oh, no, no, no, no, I
Ally 18:21
thought I thought her pediatrician. He's such a goofy kid too. And like how he was drinking water was so funny. He would like go bait, like, really loudly and just funny. He was just he just goofy and I was like, I thought she was just gonna say like, He's just funny drinking water, like making funny noises. He's it's summertime like you guys are? Yeah, you guys are good. He had lost two pounds. And that's when she was like, yeah, he lost two pounds, you know, let's have him take. She didn't even say anything about diabetes at all until she came back in and told me so it was not even like other than my aunt mentioning it. It was not even like a thought in my head. I thought I didn't think like my kid would have diabetes. There's I didn't have any history of it. Like I knew one girl in high school that had it. But other than that, I had no like, no idea what diabetes really was about. Yeah, yeah. So we drive to the hospital. And my husband was at work. And luckily he works like he works at downtown Austin. And so he was really close to the hospital and was able to meet us there. And I like on the way there there's this like children's museum that we go to a lot and I was like, Oh, cool. Like it's right next to this hospital. We'll stop there when we're done here. Like I just thought it was gonna be this like, rolling
Scott Benner 19:35
thing. Yeah. Turns out the lady at the front desk is the only one who knows what's going on. Yeah. Which by the way, makes sense. If you think about it, she's like the podcast or at the hospital. She has all these conversations with all these people. And you know, seems to remember them. Hey, hold on one second. Do this with me. I'm turning up the volume on my other computer. Hold on second. Okay. Today's episode of the podcast is sponsored by Dexcom. And I'd like to take this opportunity to tell you a little bit about the continuous glucose monitor that my daughter wears the Dexcom G seven, the Dexcom G seven is small, it is accurate and it is easy to use and where Arden has been wearing a Dexcom g7 Since almost day one of when they came out and she's having a fantastic experience with it. We love the G six but man is the G seven small the profile so much closer to your body, the weight, you can't really feel it and that's coming from me and I've worn one I've worn a G six I've worn a G seven I found both of the experiences to be lovely. But my gosh is that g7 Tiny and the accuracy has been fantastic Arden's Awan C's are right where we expect them to be. And we actually use the Dexcom clarity app to keep track of those things. That app is built right in to Arden's Dexcom G seven app on her iPhone. Oh, did you not know about that? You can use an iPhone or an Android device to see your Dexcom data. If you have a compatible phone, your Dexcom goes right to the Dexcom app. You don't have to carry the receiver but if you don't want to use the phone, that's fine. Use the Dexcom receiver. It's up to you. Choice is yours with Dexcom dexcom.com/juicebox. Podcast agnostic diagnostician have a little voice wants to say it again. Hola diagnostician. So I was saying it right? It's just a stupid word. Okay. Sorry, the little voice continued. Just Did you know you can YouTube basically the pronunciation of any word? Yes.
Ally 21:38
Very helpful.
Scott Benner 21:40
If you've ever heard my G voc ads, and you've heard me say, so finally, you'll Rio, which I don't know if I just said correctly just now. But I want you to imagine me sitting here listening over and over and over again to something going so final urea. So final urea. So final urea, and then I hit record and I went, if you have diabetes, or So finally, you're like I blurted it out as fast as like,
Ally 22:04
I'm always gonna imagine that now. You're
Scott Benner 22:05
gonna have to I sat here for 45 minutes trying to say that right. Then I sent it off to GE voc who sent it back to me and said, You're not pronouncing it correctly. And I was like, you've got to be kidding me. So I did it again. Anyway. Okay, so not funny drinking. Funny. He said, Goofy. You should have said, Yeah, you should see what his dad thinks it's funny. You're now in the hospital, you have this diagnosis. Does the weight of what it is hit you then? Or how long does it take for you to really, like, come to grips with what they're telling you?
Ally 22:38
They hit us like when we got in our room, like we when we got there. It was crazy. Because they like, met us at the door. They had like a stretcher and everything like that, because his blood sugar was like nine. It was like 900 something. And I mean, he was in DKA. Like for sure. But he never acted like it. Like he definitely was tired sometimes. But I mean, he's he was a toddler too. So I just thought he was tired. But he was never like, so lethargic, that I was like, Oh my gosh, something's wrong with him, you know? Yeah, they like medicine at the door with a stretcher and he just like comes bolting running in the door and they're like, oh, okay, I guess we don't need this. Like, he's like running
Scott Benner 23:17
all they saw that number I thought that kid can't walk probably Yeah, they thought he was like
Ally 23:21
in a coma almost. But no, he's running down the halls like I think when it really hit us is when we got to our room. And they started like going over everything with us and you know, telling us he was gonna wear a device forever and you know, all those just everything that came with it and we had some great nurses and doctors but we kind of had like a rocky we definitely had a rocky start with his diagnosis, just like from the support that we had. I think when it like really hit us was when we had one just she was not a great nurse. And I was panicking because His birthday was in three weeks. And I was like well do I need to like contact our cake baker and see if they can make like a sugar free cake. I had no idea you know, like what to do at this point. And the nurse was like, oh definitely he'll never be able to eat sugar or sucker or cake ever again. And that's when I like I just like lost it at that point. And I was like emailing the cake baker and like can you make a cake and sugar free like it was just like devastating because I was like I had you know, in my head I was like he's never going to be able to do these things again like and obviously she was just not very educated and he eats cake and he does all that stuff now but at the time that's when for me I was like wow, this is really life changing like he's things are really going to change and then of course like putting on we we actually left the hospital like with a CGM and we got to where that I think that's when it really stuck. Sunken. We're there for three days just because we were like, I'm not ready to leave. Like I wasn't confident in everything.
Scott Benner 24:54
We stay another couple of months maybe Yeah, I know. I felt like that. I was like we're going where home Yeah, yeah, I don't know that I know what I'm doing. Can I ask? What was more impactful to you that his diet you thought was going to change? Or that he was gonna have to wear a device? Well, both
Ally 25:12
for sure. But I think I think more his diet, I guess, that's what I heard while you were talking. Yeah. It's funny story because like, two days before he was diagnosed, my husband was watching him and sent me a picture of them at Target. And he had an apple juice in one hand and a cake pop in the other. And I text all I sent back was, why is he drinking an apple juice? I had never given him juice. Like he never really had sugar other than like, you know, his birthday cake or, you know, special occasions. Yeah. And I was like, why is he drinking an apple juice? That was like, two days before he was diagnosed. That was his first time ever drinking apple juice. And I was so mad at him. I was like, There's no, like, why is he drinking that? And then ironically, we get to the hospital. And they're like, yeah, and the best way to treat his Lowe's is with apple juice.
Scott Benner 26:00
We know where to get that, actually. And I can get a decent cake pop, too. Yeah. I want to say something before we move forward. I want to I want to, like take up for you here. I realized that you were in my Facebook group. And I just went and looked and I want to say and I mean this with a lot of respect. I am very straight. And your husband is so handsome. Like really? Seriously. Like what did you like? Oh, my God. He's an attractive guy. No kidding. Look at his eyes. Yeah, I mean, if he sauntered up to me, I'd be like, handsome. Okay, all right. That's that. I'm just saying you've got a really good defense. No. This is not to denigrate your looks. I am just saying the man is really attractive. What? You know this about him? I imagined. Well, yeah, yeah. Geez. Talking about a facial structure. Oh, look how pretty your kid is. What the heck?
Ally 26:58
You people are making? I'm never gonna hear the end of this one up.
Scott Benner 27:01
Is he gonna take credit for it? You're attractive. I just don't want to tell you I did people say I sound creepy. No, but seriously, you have a really attractive family. Oh, I think you seriously look at your son's eyes. They're so almondy but still pretty. Like your husband's who does not? Does not have almondy eyes. But really?
Ally 27:21
Thank you.
Scott Benner 27:22
Holy Christ. What did you people do? Did you meet him at a magazine shoot or something like that?
Ally 27:28
No, we actually met at like a restaurant and bar at this place in Austin. And yeah, that was I mean, I was attracted to him. Obviously.
Scott Benner 27:39
I would have slept with this guy to date. So I'm just saying was a lady. I'd be like the first ones. For me. The second one is for me to get an Amen. All right, it's enough for this. Your kids got diabetes. We shouldn't be mesmerized. I wish I was handsome like that. That's amazing. Okay, I'm warm. Do you think that's because I've admitted to something. All right. Oh, my gosh. You get home, wearing a CGM shooting with a pen or needles?
Ally 28:08
Yeah, we were MDI. Yeah, like whenever I was leaving the hospital, like the last night we were there. They were like, Okay, you guys can leave if you want it, like, we're able to discharge you. Do you want to stay one more night? And I was like, No, I want to say one more night for sure. Just to like, get the hang of everything. And the minute we left the hospital, I call my mom. And I'm just like, bawling. And I'm like, we have to find a nurse. I can't do this by myself. Like he's gonna die. He's gonna die tonight. Like, I have no idea what I'm doing. We need to have a nurse that just like, is with us for at least a few hours a day or something. Like, let's see if insurance covers that. We're like, trying to like, look into having a nurse and we didn't end up doing that. But I was just like, so freaked out. We got home and we were MDI for we got on a pump in October of that year. So about four months. Yeah, we had, it was we have a new doctor now which he is amazing. He's like, we are so lucky that we have him but at first we had it was just a rough start, like our team was just he was assigned to us at the hospital and that's just who we like kept seeing after he was diagnosed. And they were very what was that?
Scott Benner 29:16
They socked is what you're trying to say. Seems like you're trying to be nice, but they were.
Ally 29:21
They're terrible. They were like, so confused. And I'm very like Type A I had, I would like write down exactly what he ate at what his blood sugar was before we started how long we waited to Bolus him when he was at an hour after what he was at two hours after like I wrote down everything on like an Excel sheet and I would like bring it into them. And they're like, Ah, I don't know. I don't know. I just don't know they were always like, I don't know confused Yeah, they could never figure out what to do. At one point the doctor was like, well you know he's gonna be getting on it. This was in like June or July still there like he's gonna be getting on a pump here in like October we had our appointment set up for the train And she's like, it's okay, if he just runs high until then. And I was like, what that's like three months away, I'm not gonna just let him run high for three months, like, and at that point, I had been listening to the podcast. So I was basically like, I was like, being a pump. For him, like, I would go in and give him like, point two, five, with a needle. Like, we were giving him like 15 to 16 shots a day sometimes just to like, yeah, slowly get him to come down. But and we got his we got his agency down from 9.9 to six, just being in MDI, and like, constantly was giving him shots.
Scott Benner 30:36
Oh, you know, I here lately, the last six months, the feedback I get sometimes is, you know, the pro tips are great. But you know, there's more algorithms now. And you should update the algorithm information. I think what people might not realize is that I was acting as an algorithm before they existed. And I didn't know that, but I was right. And, you know, if you learn it that way, then you know it, you just know it then and making the small adjustments bumping and nudging blood sugars, taking away insulin, giving extra that kind of stuff, like learning how to meet the need, that all those things I talked about in that Pro Tip series. And in the podcast, I think are just, they're very foundational. Yeah, for
Ally 31:20
sure. Yeah. That's what I was doing. I was like, basically, just I listen, I remember that episode. And that's when I was like, Alright, I'm just gonna stop. They actually told me one time I was calling, like, every day, and they were like, You can't call every day. Like, that's not what we're here for. And I was like, he was just diagnosed, like, I have no idea what I'm doing. And this was like, even with a low or high blood sugar, we don't have like the staff to support every day. And this was like a very well known, like, Children's Hospital here in Austin. And they're just like, Nope, you can't call every day. I'm like, What do you mean, I can't call every day?
Scott Benner 31:50
Well, you saw it, though, because you charted everything so well. Yeah. And they couldn't help you. Yeah, they were so confused. What they mean, when they say you can't call every day as we don't know how to help you stop reminding us how bad we are at this place.
Ally 32:02
Yeah, just let it run high. And when you get on the pump, the pump will do our job for you. Basically,
Scott Benner 32:07
can we just let the kid be sick for three months? And then we'll put the magic box on him and this will all be over? Yeah,
Ally 32:14
yeah. And at that point, I was like, alright, well, I'm going to find a new doctor because this is crazy. I was like, I will fly to like, I just want the best doctor and we found he wrote a book actually the sugar surfing Doctor ponder, ponder.
Scott Benner 32:26
Yeah, on the very first meter of the podcast, I think,
Ally 32:30
really, he's like, incredible. So we we drive to him now. But yeah, I didn't mean it was like night and day difference. Like it was it was great moving to him. I
Scott Benner 32:40
can't imagine otherwise, honestly, like, I don't. I mean, it's been 10 years since I talked to him. But I remember I didn't know who he was like listener. The show was like, Hey, you have to have my doctor on. He's really good. He wrote this book. And I was like, whatever. So he comes on now. First of all, I don't read so I didn't read the book. And and I'm talking to him. I don't read I just said, it's so proudly, like your husband is like I get pregnant every time. That's what people don't know. Well, you've only had sex three times in the last five. It's just very accurate. But But I had Dr. Ponder on. And I remember, I think I said it out loud. During the episode. I remember saying or thinking, Oh, you do what I do. But you call it something. Like that's what I remember feeling when he was on the show. I'm like, Oh, you do what I do. And he was just like, ahead of the curve on understanding where to put insulin. Yeah. and where not to put it. Yeah, that's
Ally 33:31
what I noticed, too, when I read some of his book, but I was like, this is this reminds me of the podcast. And yeah, I was like, this definitely aligns more with what we're looking for. For sure.
Scott Benner 33:40
Yeah. Oh, no. Wonderful. And I want to be clear, like, I don't imagine that Dr. Potter ever heard this podcast, and I'd never read his book. If you really think about diabetes. Like if you step back and see the whole picture, it's the only understanding you can come to is that insulin needs to be where it needs to be. And you know, and that that's going to change. It's not static. It's not just like, oh, I use seven units of Basal insulin every day. And that's always going to work. That's a ridiculous idea. My Basal rate at 2am is always point five. That's ridiculous. Why would it always be point five? You know, so, once you can see the, like, I used to say in the podcasts all the time, it's like, it's like the movie, The Matrix, when Keanu Reeves slows the bullets down and it just wanders in between them. Like at one point, that's how I felt with diabetes. I'm like, Oh, my God, I see everything now. Like, I know, I know where to step. And, and he very much has the same vibe. So very cool. Yeah. And you're lucky to be in Texas where you can get to him. Yeah, okay, so what about you? Like I what I hear you made me is so funny. I said a lot of stupid stuff. And then I got really warm. I think I was like, Oh, I probably shouldn't have said that about her husband, but whatever. And then I got like, I got like, warm and then you said I wanted to have a nurse the day we came home. I thought he was gonna die. And then I got this horrible chill that all sent my warmth in a really weird way. I got humid for a second, which is not something you want to know. But that's how fast my body changed. Because I remember leaving the hospital thinking, Oh God, I'm gonna kill her. Yeah, that's, yeah,
Ally 35:13
that's very much how we felt I was like, There's no way I can do this. Without them. It was more like, it was like a lot of the math behind it. Like, I've never been great at math and just like all the numbers that they gave us, and it just took me a while to like, wrap my head around all of that. And I'm like, I don't know if I'm doing it right. Like, what if I gave them too much, and he was definitely still honeymooning. So sometimes we would give them insulin. And here we get low. And yeah, I mean, it was just, we're definitely in a much better place now. But
Scott Benner 35:42
I have to tell you, if you promise not to have any more kids, I'm going to call this episode one plus one equals five.
Ally 35:49
No, we're, we're done. Okay.
Scott Benner 35:51
Totally the title then. Because you're like, I'm not good at math, but you're pretty good at some adding. So I'm gonna that's what I'm calling. It has nothing to do with what we're talking about. I really don't care. somebody the other day said, Hey, we just listened to this episode. And it's called this this this? What does that have to do with anything? And I was like, I don't know. It's like, there's 1100 episodes. There's an episode coming up in a couple days. It's called reheated Happy Meal. You would think I'd know why that is. But I'm staring at it. I have no idea whatsoever. I'm gonna have to listen to wow. Yeah, it's just it's this. The math got me at first too, which was funny, because it's not complicated math. It's like, it was like fractions. You know, math. I knew. And yet I left I thought, Oh, I'm gonna do the math wrong. And I'll pick an amount of insulin. That's wrong. And then I'll kill her. That's what's gonna happen. Yeah, yeah. Yeah. No juice. Well, anyway, I feel for you. I've been there. But that didn't happen. And as a matter of fact, the irony is, is that that feeling you had that day? Like, I can't leave these people. I have to bring one of them home with me. These are the people who no, it took you very, not very long at all to find out are not the people I should be talking to at all
Ally 37:03
about rice. Yeah, I was like, No, we're definitely moving on here.
Scott Benner 37:06
How quickly do you think you became the master in that situation? How long did it take you to get it? Like, put it all together?
Ally 37:14
It was when they said you can't call every day and just let him run? Hi. And that was probably I don't even think I was listening to the podcast at that point. Because I was like, I just knew that was not right. I was like, that's insane. Why are you telling me that? I would say that was probably one to two months in. And that's when I started looking for another doctor. And Dr. Ponder was booked until it was October that he was booked out till and I literally called they probably got me in because they were like, she's never gonna stop calling if we just don't get her an appointment that called every single day. And I was like, Hi, have you guys had any cancellations? And eventually, they were like,
Scott Benner 37:51
Jesus, let me come at lunchtime on Thursday. For God's sake, let's get this done.
Ally 37:55
Eventually, they were like, Yes, we had a cancellation. And so we switched over right away, but
Scott Benner 38:01
they probably kicked them out of the practice that they could take, you
Ally 38:05
know, I was like, the person who answers the phone. She was like, Oh, hi,
Scott Benner 38:09
Ali. I know you're embarrassed. You don't want to say but you emailed the lady on the phone a picture of your husband and said, I'll bring him if you let me in. Right? Yeah, that was it. You're like, Oh, God, he's really gonna think he's handsome. By the way. He aged? Well, you don't mind me saying that. Right? No, you know, they mean, like, he got better looking as he got older.
Ally 38:29
No, it's just funny because I know my husband and he is never ever gonna let this go.
Scott Benner 38:34
Oh, if this was me, I'd have a T shirt said that. There's a podcast somewhere that says I'm handsome. One man said he'd be gay for me and he striped. That's what my T shirt would go on the back. There'd be a whole explanation about it. I'd be in public explaining it the people. Good for him. I wish I would have met him when I was in Austin. I might be married to him now. And you wouldn't. Yeah,
Ally 38:53
we met you. We went we went to the he was there. We were at the Capitol.
Scott Benner 38:57
Oh, okay. Well, then I don't know what happened that day must not have been his best day or you wouldn't be pregnant a third time and I'd have a new man. So it's lovely. But what a nice event by the way, huh? Yeah, no, it was great. Yeah. Yeah. Gave me a lot of thoughts about how to do things in the future. Actually, that's neither here nor there. What What kind of pump does your son use now?
Ally 39:17
He's Lundy Omni pod five.
Scott Benner 39:19
Okay. How do you find this to be? How's it going?
Ally 39:21
It's good. We, I mean, we definitely have our ups and downs with it. But I think that's just his settings needing to be changed. Yeah, like recently we were we were having a really hard time with His blood sugars. And I just reach out to our doctor and they're really good about like, looking at his history from like, the last two weeks to a month and they'll just send me over what they think I need to change and we made some changes to it. And he's, it's been great now. We definitely really liked it a lot.
Scott Benner 39:48
Oh, that's excellent. Why did you want to be on the show? Well,
Ally 39:50
when I first started listening to the podcast, I was well I guess part of my story too was so I yeah, I guess it didn't mention this one. When my son was diagnosed, I thought I was pregnant too, because we had been trying for a while to get pregnant with my now my daughter at the hospital, I was like, I think I'm pregnant. Wait until I got home and I ended up not being pregnant. And we took a little bit of a break. Our plan was, we wanted them kind of close together, like two to three years apart. Sorry. When we got home, I was like, I don't think I ever want to have another baby. Like, I'm glad I'm not pregnant because I I cannot imagine having another kid. I thought that we were just done. Like, I was like, I don't want another kid. i This is too much to handle. And then we started trying again, because I was like, That's ridiculous. Like, you know, one day if he's like, how come I never had a sibling? Are we just gonna say well, because you got diabetes? Like
Scott Benner 40:44
he was thinking of jumping out a window, so we didn't do it. Yeah.
Ally 40:47
We're like, That's ridiculous. So we ended up getting pregnant. And I struggled with that for a while because it was I was grieving, obviously, like, the diagnosis of my son. And then I was also kind of grieving, like, maybe never having another baby. That's something that I really wanted. And I was just like, really going through a hard time. And I listened to the podcast, and I think I didn't like post it on there, if anyone had, like a toddler, and then also had another baby, like, right after just to see if anyone else, like went through something similar. So and you know, now here I am, we're having a third and like, you know, I just a really helped me a lot like listening to other people and their experiences, like other people's stories, I guess. And yeah, I just wanted to be an inspiration to someone, like if someone listens to this, and they're going through something similar to what we went through, and they're in that phase where they're like, I'm just stuck here. Like, I don't want to grow my family or, you know, gonna kill my child. Like, I just want it to be an inspiration that Not gonna happen.
Scott Benner 41:50
That's wonderful. When you reached out to other people. Did you find other people with super handsome husbands? That said, No, I felt like that at one point. But I got over it or like, what was the response back that you got from when you asked that question?
Ally 42:02
A lot of people said that they had other kids. I remember like showing my husband, I was like, Okay, other people have kids that begin with type one or like, have a baby, like, you know, a second baby after. So my daughter ended up there. It was a year after he was diagnosed almost of the day, her birthday was is June 17. And his diagnosis date was June 23. So almost exactly a year later, we had another baby, so and I do feel like that year was like, I mean, a whole year, we learned so much about his diabetes, like his a one CEU is like, I think at the time, it was like 5.4. So I mean, we were we're in a good place. And like, for sure, I felt I was like, I'm so glad we decided to have another kid because that would just be ridiculous to let this stop us from anything. But definitely from growing a family.
Scott Benner 42:52
I'm reminded all the time of I don't know if anybody remembers this. But Sam fold who is now like the general manager of the Philadelphia Phillies was a professional baseball player. I had him on the show years ago. And I asked him if like something about, you know, did you ever think of having your kids tested to see if they might get type one at some point? And his answer was somewhere around? Well, no, because that doesn't matter. And when I dug into it a little bit, he his answer was I have diabetes, and I'm okay. And I thought, oh, it's like such a simple little moment. But it really is stuck with me all these years. Like, yeah, like, why would he be scared of a thing he is that he's, it's not causing him any trouble? You know, and I was like, Oh, that's really something like, I think it's so much about understanding it. Understanding the insulin, understanding how to make your life run, not normally. smoothly, you know, and there are going to be issues, you know, like, you are gonna get low, sometimes you're gonna have problems, like, you're always gonna have concerns that other people don't have. But if day to day, you get what you expect. And you start doing things kind of like almost unconsciously, because you just know the right things to do, then why would you think that? Like? It seemed like such a normal question to ask. But I would never ask my daughter present day. Hey, do you ever think about not having children because you think they'll have diabetes? Now? She might have that thought, but I would never ask it over anymore. Yeah, yeah. So anyway, he gave me that great answer years ago. And it stuck with me this whole time.
Ally 44:20
Yeah, we've definitely talked about that. Like, if we want to do the testing for either of our kids. And part of me is like, I mean, yeah, it'd be nice to know if they carry the gene. But like, then on the other hand, I'm like, Are we just going to if they do, are we going to sit there every day wondering like us today? The day? Like, I almost don't want to live like that.
Scott Benner 44:40
It's a hard question. Yeah, it really is, especially now that these drugs are coming out like tz old and things that can, you know, keep you from getting diagnosed, you know, for longer and stuff like that. You think, Well, maybe if I could do something to keep it away for a year or two. I would, you know, yeah. But no, no, it's just I think it's a bigger point. I think it's a philosophical point. and not so much a question about management and, and medicine. But anyway, so you found the podcast podcast was helpful. I don't want you to like, say that again. Like, I hear you. I'm terrific, whatever. And, and but but isn't it odd that I can vacillate between stupid and really thoughtful about diabetes the same 35 minutes? It's a skill of I mean, I don't know what other people think. Definitely. Yeah. So one kids got it. One kid is eight months old. You're nine weeks pregnant? What are your plans for your family? Like, you're 33 years old? You have a very young family. You're a young person, like, how do you see your life going? Do you ever think about that?
Ally 45:39
Yeah, definitely. Yeah, I mean, I guess like diabetes related. I remember, like, at the very first appointment with our art doc, Dr. Ponder that we have now he made a comment that was like, I was still like, not in a great place when we went to see him like I cried at our first appointment, because I was just, I was very emotional about it for a long time. And one of the first things he said was the way that you perceive this disease and the way you handle it, and like, how you carry this is how he's going to perceive it. And that really stuck with me, because I feel like I was letting it consume me. And like we had, for example, we had a Disney trip planned, like before he was diagnosed. And I was like, we have to cancel it. And then after we had that appointment, I was like, why? We can't cancel it. What is that teaching him like, he has to cancel things because of diabetes. Like, we have to just live our lives the way that we normally would and just continue on the same way that we do in it. It's fine. Like everything went well, like we went to Disney, and it was great. And that's one thing with diabetes that I'm like, I really tried hard to just not let us let it stop us from anything.
Scott Benner 46:49
I'm gonna write down perception is reality, and do an episode about that. That's really good idea.
Ally 46:57
Yeah, it just the way that we like, handle it, I guess we just don't ever want him to feel like he can't do anything. Or we can't take a trip or he can't We can't have a sibling and because of diabetes, like in every time we've been scared to do something, we we go, you know, we do it. We went to Disney when he was still on shots, like we were MDI and we look back and I'm like, Oh, my gosh, I can't believe we did that. That was intense. Doing that at Disney. But we did it. And yeah, and you can went fine. I
Scott Benner 47:27
think they are I think he is right. First of all, if management was difficult for you, if you didn't know what you were doing, and you were having wild blood sugars all over the place, they were up and down, up and down. I don't know how much your perception of it would be changed for him. If you were just always like, super happy or like, everything's fine. Because you'd be like, Yeah, everything's not fine. Yeah. But you know, if you're doing well, and you don't let it burden you psychologically, then I see that. I mean, by the way, there'd be value the other way to at least, you know, things are going badly. But we have a good attitude, I think would be a good way to live. Yeah. But better yet, you know, we've got a handle on this. We know what we're doing. And we don't
Ally 48:05
act like we're burdened by it. Yeah, like it's not ruining our lives. You know, some
Scott Benner 48:09
people would say, I wasn't acting burdened, I was burdened, but you were burdened, but then stopped being so so how do you make that transition? That makes sense?
Ally 48:18
Well, it's definitely a really, it was hard at first for sure. Like, I definitely, it took me a while to, like, get out of that. That like hole that I was in, like, I was constantly just mad, and like, I was grieving. I mean, I grieved I feel like for a pretty long time, like I, I mean, I work. I'm a hairstylist, so I work one day a week. Luckily, I'm at home all the other days with the kids. And every single Monday I would go in to work and I would just start crying. Like as soon as I got there, and I'm close with my co workers and even with some of my clients, like I would go out and as soon as I received them, I would just like start bawling. They're
Scott Benner 48:53
like how are you ally? And
Ally 48:57
it was just like, like, Okay, I have to pull it together. But I started thinking to myself, I'm like, why? Every Monday, like, that's the only time I cry, like I get to work and I just like let it all out. I was like, I'm holding it in all the other days when I'm at home with them. And like, I mean, it's okay to like, let them let him see me upset about it too. Because that's not realistic. I don't want him to just live his life like holding in his feelings about diabetes either like it's okay to cry about it and it's okay to be mad and upset about it, but just don't let it consume your life. And I started seeing a therapist actually and she is the one who was like it's okay to let him see you cry. Like it's okay. And that really like stuck with me and I was like, Okay, I don't always have to cry on Mondays that work. It's okay to like for him to see it.
Scott Benner 49:44
Well, now you might have called the podcast like I cry on Mondays. That's such a nice title. I'm writing that down too. I think that's well first of all, I think it's good advice. Think if you're gonna cry, it's okay for people to see you be emotional. I also think that if you're crying constantly should pull yourself together because you know, it is going to hurt your kids at some point to see you, you know a disaster. But there's that's not what she said good
Ally 50:06
balance. Yeah, no definitely like, don't want him to feel like he has to hold it in and just act like everything's fine because that's not healthy either. But
Scott Benner 50:14
especially when people can tell you're upset, but you don't let it out. Like, then that becomes exactly right. You learn to hold in your emotions. That's not good. Yeah. So you found this balance. So you you worked your way through it. My question was, how do you go from genuinely being upset to not being? And the end? The answer is slowly?
Ally 50:31
Yeah, I think I mean, it definitely took some time. Yeah, I mean, it took it took a while for sure. For me to like, stop grieving over it, I guess. And I think just like living my life the same way that we would have, yeah, as much as we could without, you know, before we before he got diagnosed. And yeah, I mean, seeing started, I started seeing a therapist that I guess it was about six months after he was diagnosed, because I was just like, just still just not in a great place. I feel like I was just grieving it for so long. And that helped a lot. Like, I think, and she actually has type one diabetes. So finding a therapist that has type one diabetes, and understands like what I go through is very helpful.
Scott Benner 51:11
Thank you. Yeah, I genuinely believe that. Doctors with type one helping people with type one, there's a pretty big value add there. Yeah, it's not to say that a doctor who doesn't couldn't manage well, or a therapist couldn't manage well, but it sort of gives them a head start. Yeah, definitely understanding what's going on. Do you go more than 15 minutes from your house? Now? I just want to make sure you're getting
Ally 51:38
yes, we definitely do. We're able to get out.
Scott Benner 51:43
I like the way your brain works. You were like we can we can never drive more than 15 minutes away from the house now. Which by the way, you can actually put the potty in the car. It's only seven and a half minutes because you have to be able to get back. So I also did not occur to you there are toilets, other places. Yeah,
Ally 51:59
well, we have like a little port like his potty can like go in my car. So I guess I'll just bring that and we'll just have to pull over like, let him use his little potty all the time.
Scott Benner 52:09
I'm married to my wife for a few years when she says out loud, but you think they should install toilets and seats and cars and I went wow. I actually thought I wish you would have said that sooner. I may not have married you. So funny. I remember being able to travel with like a potty. What you were doing potty training for kids. Yeah, that's a low point your life as an adult. What do you got back there? It's a bowl of pee.
Ally 52:39
Yeah, it's funny when like other people get in the car and like my sister, she's much younger than me. And she's like, Why do you have a potty in here? Like,
Scott Benner 52:46
because look how handsome this guy is. I don't mean to say that if a person is very handsome, you have no agency over whether or not they have sex with you and make you pregnant. But for me personally, I wouldn't have any conscious. I'd be like, sure you want to that'd be great. By the way, this is gonna backfire on him. Because if he brings this up, you're gonna go the other way on it. So I'm just telling him right now if he's listening, dude, don't do it. Because she'll she'll run in the other direction. That's so funny. All right. What have we not talked about that we should have?
Ally 53:21
I think that's pretty much everything. We
Scott Benner 53:23
did it. See ya had everything written down. So yeah. Did we really are you at suffered now? Yeah, like notes. Oh, my God. That's amazing. I should try planning this out once in a while.
Ally 53:35
Yeah, I think that was everything. Oh, that's
Scott Benner 53:37
so cool. I appreciate you doing this. I really do appreciate you coming on sharing your experiences on the show, sharing your vulnerability of being willing to be funny and loose. Like all that was really nice. This is one of these weird episodes where we're not even quite up on an hour yet. But I feel like we've been talking for two hours. Yeah. I love that link. I really did. Yeah, no, I think that's fantastic. Sometimes when I get into those like hour and 20 minutes, that's sometimes me going I feel like I didn't get it at all. Yeah. And I feel like I'm digging around. Like, I know, there's something I left here. I don't know what it is. But for you, I feel like Wow, we got the story out like really well, it's fun. It moves quickly. And it tells it made me cry. Like I really did cry. Oh, when you said like you felt like you couldn't leave the hospital. It made me it made me well up. It was like bawling. Like, like if your husband would have left me but like I just welled up a little bit. You know what I mean? And, and it was just, I just remember feeling like that so clearly. You know, so I thought it was really nice to share that. It's a lot. Well, thank
Ally 54:37
you and thanks for having me on. I appreciate having me on and just all the help that you've given us really, I mean, we would not have been able to do any of this without the podcast. I'm
Scott Benner 54:48
so it's so nice. I have to you want to know what I'm gonna do after I get off with you? What's that? Please? So sure you're gonna go not really Scott. I don't really give a fuck what you're gonna do
Ally 54:59
it Hey, you're gonna message my husband? No, no, I see
Scott Benner 55:03
where you're at. Your pause was a little too long. I was like, what I'm about to do. I was gonna go have an egg. Probably gonna have to. And I was thinking to put a little protein with it. But instead first I have to go to my private Facebook group where someone is being silly. And I have to now like go answer and silly to me. I'm sure not silly to them. And would you like me to share it with you want to talk about? Yes. Okay. Yeah, definitely. So there's a person, I'm not going to say their name, obviously, but has made a post it says GLP or T one D? Hello, Scott, I guess you're transitioning the podcast to weight loss over type one. What is your intention? I am very sympathetic about those who desire to lose weight. However, I began listening to your podcast for information about type one, and to learn from the experience of others with type one. Now a couple of things to this person. First of all, podcast is one word. It's not a big deal. And I'm not shaming you over. But it's not pod cast. Its podcast, one word. So taking it away from this. I've never understood this before. And not about me specifically. But about anything. I've been making this podcast for 10 years. Yeah. I mean, he's talking about the same exact thing every day. Yeah. Also, you get five new episodes a week, if one of them once in a while talks about GLP. The podcast is transitioning to weight loss. Yeah. I don't understand the there is a specific mind that sees things that way. I'm not saying it's a good or a bad thing. But there's a specific mind that sees things that way. Like you're the person who wears red T shirts. Why would you wear an orange t shirt? Like, well, what, like, that's weird, you will need to do the same thing over and over again. I've seen it through history with, like entertainers who have like long careers. I don't think I'm an entertainer. But you know what I mean? Like somebody who's been in like a medium for such a long time. And as they mature and grow. They change kind of what they think and how they talk about it sometimes. And then yeah, people will come in and yell at them. That's not what you do.
Ally 57:12
Yeah, just don't listen to that episode. I don't even know what she's talking about.
Scott Benner 57:16
Oh, I like that. You thought it was a woman? That's nice. Oh, yeah. I mean, I'm not saying it is you're saying it is or it isn't. But you know, if that happens to me, I'm sexist. When you don't, it's nice is a mistake. It's interesting, because my to go I'm gonna go back and explain to them, but I don't know where to start. Like part of me wants to say, currently, there are 1138 episodes of the podcast. There are countless series about different management ideas. Like go listen to those. Yeah, you want me to say the same exact thing over and over again. Day after day, the podcast will implode it'll die like it won't. Yeah, I can't get on every day and be like, hey, Alec, would you like me to explain to you how to Bolus for food?
Ally 57:58
Cuz there's something for everybody. Gift episodes you don't want to give.
Scott Benner 58:04
were more like what is your intention? My intention? There's so there's like, the monkey side of my brain wants to respond and go stop listening. You don't understand? It's bad for you. It's making you upset. Part of me wonders if I'm just reading the posting correctly. And if maybe their tone and intent isn't how I'm taking it. Right? Like it sure like No,
Ally 58:28
sometimes. Sometimes I see posts and I'm like, What are they doing? I'm just kind of person real. Middle she like I've computer just posting this. Trying
Scott Benner 58:38
to piss people off. Listen, yeah, I have a master list in front of me of just the the episode series that are about management. The defining diabetes series has 51 episodes in it, where we go over different, you know, meanings for different works here in diabetes, the diabetes Pro Tip series 26 episodes, I have heard over and over again, listen to those a once he goes into the low sixes diabetes variables, 22 episodes about variables that impact diabetes. Bold Beginnings is basically the pro tips for beginner 25 episodes defining thyroid 10 episodes, after dark now has 47 conversations with people who are talking about things that maybe aren't like polite, you know what polite conversation is? I don't believe in that. But obviously, I don't believe in that diabetes myths series 17 episodes about myths about diabetes 39 episodes about algorithm pumping 12 about how different people eat different ways. 25 about mental ill mental wellness for type one, there are 20 Almost 30 episodes of Ask Scott and Jenny where people send in questions. There's 16 About type two diabetes 17 about pregnancy with type 128 about talking to children with diabetes 12 About disordered eating 15 about celiac 42 with families that have multiple people with type one in them, how to Bolus or fat and protein seven episodes, eight episodes about the math behind your settings. eight episodes about glucagon stories, people who have had to use glucagon. And they're explaining what their situation was. There's a parenting series, a grand rounds series now for doctors, cold wind is healthcare whistleblowers talking about how doctors really are like, I don't know if you've heard it yet, but they're talking about what they see at their jobs like doctors, nurses, stuff like that. It's not uplifting. And I have nine episodes about my weight loss journey called a week over diary. Nine. So
Ally 1:00:33
it just sent her that.
Scott Benner 1:00:35
I love again, you said her? I thought
Ally 1:00:38
you said she for some reason.
Scott Benner 1:00:41
1138 episodes available right now. Nine of them are about me using weego V. Why is the podcast Let me ask it again, transitioning to weight loss. I don't know what to say about that. That person is listening right now. I don't know how to answer that question. It would be like if you said to me, why do I see your fingers transitioning to being all pinkies? And I go, there's just two pinkies there's a there's a total 10 total digits two thumbs to pinkies. They're not all pinkies. I don't understand. It's a line someone draws their head or a fear or I don't even know what like I can't figure out why this person's asking this question. But now it's my job. Drama. It's my job to go explain it instead of eating my goddamn egg, which is all I wanted.
Ally 1:01:30
I did want to say I really enjoyed the parent teen series, I forgot to tell you that. I liked the because that's kind of new. I've been listening to that. And it's not even I mean, sometimes it's not even about diabetes. It's
Scott Benner 1:01:41
not about diabetes. What am I turning this into a parent? One episode a week. Thank you. And by the way, if you listen to it, it's about parenting. But it's also about diabetes parenting, you just don't have to say the word diabetes constantly to do it. Also, not for nothing. But G LPS you want my opinion, not a doctor, no research don't only stock in a pharma companies nothing like that. GLP medications are going to be widely used with people with type one diabetes in the coming years. That's my belief. And I'm talking about it now today's episode, which is probably what prompted this person is a mother of a young child with type one diabetes. Child's fifteen's had type one for two years, who is using we go V for weight loss, but we go V is ozempic. It's the same drug, right? And this kid's insulin needs are significantly less. As a matter of fact, by the time you get to the end of the episode, you find out she's one four to seven units of basil a day and not currently bolusing for her meals. Wow, she was not not honeymooning, nothing like that. Is this going to be a common story? I don't think so. But it's incredibly interesting. Yeah, story about GLP is being used by a person with type one diabetes. And this person says to me, why is this podcast not about type one diabetes, I'm talking to the mother of a child with type one about her child who has type one diabetes, who happens to be using a GLP. And this person says to me, how come this shows not about diabetes? I don't know what to do, like
Ally 1:03:16
your podcast anyway. So you can do whatever you want
Scott Benner 1:03:20
to be that person. But also, if we're gonna go down that road for a second, I've helped 10s of 1000s of people live better with their diabetes, using my idea of how to communicate with them. I don't know why a person who hasn't helped three people in one way that I know of, maybe they have, but they definitely I mean, this person has definitely not helped as many people as I have. Why would they say to me, you know, I know how you should be doing what you're doing. And this, isn't it. Okay. I don't even know where to go with that. Like, imagine if I got on line today. And I was like, dear Steven Spielberg, you don't make movies, right? Why are we talking so much about your family? And this last one? Where is Indiana Jones that don't watch that one? Like, oh God, la now you've made me upset. Alright, mate, if you know what I'll do to calm down. I'm gonna look at a picture of your husband. Stare into his eyes till I relax.
Ally 1:04:25
I'm gonna have to go look for that post. Because now I want to know, oh, are you responding? Why don't
Scott Benner 1:04:29
you say it's gonna be a lot of fun. I'll be very polite. I'm a nothing but polite. And if this person is listening right now, it's like eight months later, resist the urge to get upset because I know you're still listening. Because I mean, podcast is fantastic to me. Did you hear this episode? I'm at the top of my game alley. There's nowhere to go but up, and I still feel like I'm bumping my head on the sky right now. There's there that's me being no way modest. Anyway, you're delightful. So am I, we're done Hold on one second
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#1266 Dr. Tom Blevins on Inhaled Insulin
Dr. Blevins is back to talk about the inhaled insulin called Afrezza.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1266 of the Juicebox Podcast.
Hey Dr. Blevins is back today to speak about Frezza the inhaled insulin. You know, I love Dr. Blevins on the GLP episode so I thought, I wonder what else this guy knows about today we're gonna find out. He actually runs a lot of studies out of his Austin practice. So if you're interested in some type one studies, you should reach out to him he tells you how towards the end. 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 healthcare plan or becoming bold with insulin. Don't forget, if you use my link drink ag one.com/juice box you'll get a free year supply of vitamin D and five free travel packs with your first order. And if you go to cozy earth.com and use the offer code juice box at checkout, you're gonna save 30% off of your entire order. Kids don't forget he won the exchange.org/juice box if you're a type one, or the caregiver of a type one and a US resident I need one and would love if you would go over there join the registry complete the survey takes about 10 minutes you're going to be helping type one diabetes research while you're supporting yourself and me.
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 us med.com/juice box or call 888-721-1514 Get your supplies the same way we do from us med this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox. Everyone Dr. Blevins is back, you might know him from some of the GLP conversations we've had recently. But today he's here to talk about a Frezza which is of course, the inhaled insulin. Dr. Blevins Welcome back,
Dr. Blevins 2:24
Scott Good to be here. I do want to point out to the audience that I participated in one of the studies with a Frezza are actually a couple of studies. And I'm actually one of their advisors. So keep that in mind. And it's great to be here. I think this is a this is a type of insulin that everyone wants or needs to know about. Why do you think? Well, I think it's because, number one, it is unique, and is quite unique. And it's kind of less known about and people need to know about it as an option. And it's, it's unique in that it gets in so quickly. First of all, it's inhale that's unique. And it gets in very quickly and out very quickly. And I'm going to talk more about that. Right.
Scott Benner 3:08
So how long has a President been in the marketplace? You
Dr. Blevins 3:13
know, I think if you ask people how long they would say, oh, it's brand new. And the answer is just not at all. It was approved by the FDA in 2014. And it started off being licensed to Sanofi. And then it returned to the company called mankind where it which is where it exists right now, the company mankind in 2016. Some people may remember that in, in the past, a very, very impressive person named Al Mann actually developed the the insulin, he saw this potential of dry powder. And he knew that if it was inhaled, it would get into blood very quickly. And he put a lot of his own money into it. And you might also remember that he was the guy that helped develop the mini med Medtronic insulin pump. No kidding.
Scott Benner 4:03
Yeah, about that. Listen, when people are passionate about things, that's how you get different and change, you know, because it's easy to get behind the thing that exists. But if you have this kind of, because it's not so much well, not that it's not difficult to make something work. But once you make it work, it's the selling it part. And I don't mean the financial part. I mean that explaining it to people and letting them know what it is and getting them to try. Like, that's where a lot of the really difficult work is because yeah, so that's what I don't want. Like, I don't want to be a barrier for people listening, because I was presented with the idea of letting art and use inhaled insulin. I mean, forever ago, and I said, I don't know enough about it. And, you know, just hearing what I'm hearing. I'm like, I don't know how thrilled I am about my daughter just inhaling something. And she was young, so we didn't really look back at it again. So I'm interested to hear what you think of it and what this study showed. Yeah,
Dr. Blevins 4:57
well, you know, many people remember this First inhaled insulin was, came in a ball really literally what we would call a ball. And I'm looking at what across my room, I kept it up in my history of diabetes shelf there. And it was a big mess, you had to put the little medicine and a little, sort of a bong, and it, modified it a little bit and aerated it a little bit. And then you took the big Bong up to your mouth. And this this, now, the Frezza comes in a very little small inhaler, very simple, and very portable, and very discreet. And I think that's one of its advantages.
Scott Benner 5:35
And so, I've had it described to you before, but what's the process of inhaling it and it's a powder, is that right?
Dr. Blevins 5:42
Here's what happens, it comes in three doses, which we'll talk about more in a minute. And of small amount of powder, if you look at the cartridge, and the cartridge is then just inserted into a simple little inhaler that measures about I wish you could see it, but it's about two and a half inches or something like that. In length, the end it's about though maybe a half to three quarters in width, and depth, and says clip it in, put the inhaler up to the mouth and aim. So it goes into the into the airway and not in palate or to the tongue. And then take an inhale inhalation, and then that's it. And and take a deep inhalation. And that is the dose. Okay, so, you know, I was gonna mention this later, too, but it's very discreet. A person could give me in a restaurant, just reach in with the cartridges in, flip it in. No, no injection, no pin needles, no pins, that kind of thing. And those are pretty discreet too, I think. But don't get me wrong. But many people run into the restroom to give their insulin injections in a restaurant, or when they're out in public. And they don't have to. But the inhalation is very, very straightforward. And I've had quite a few patients who sit in a board meeting and they're taking their their medicine, it doesn't interrupt them or anything else, no
Scott Benner 6:56
one knows. It reminds me of a whistle. When I look at it, like that kind of size, you know what I mean? Not not large. And then that's disposable when when you're done right?
Dr. Blevins 7:06
Well, the inhaler lasts for about two weeks at a time, the little cartridges measure may be three quarters by half an inch or something. And they are disposable. They can be carried in person's pocket. They can be carried in a purse or bag and they're very portable. And they are disposable after they're used.
Scott Benner 7:23
Okay, so inhaler that a cartridge goes into, I inhale that the cartridge is disposable. But I can use the inhaler for a bit. That
Dr. Blevins 7:31
is exactly right, usually two weeks at a time, as was recommended. And I'll say something to Scott, when people inhale, I've seen kind of models, there's a kind of a mock up over at the MannKind manufacturing facility, and the Frezza manufacturing facility. And when people inhale that this powder gets into the lung very quickly. And you know, the advantage here is that it gets across the alveoli very quickly. And some people ask, well, you know, what is the surface area for absorption of the lung, it's about the size of a tennis court. I mean, those lungs are there. They're absorptive machines. So getting something across that rapidly is very doable. You put it on a carrier, there's something called a technosphere micro particle that the insulin is is attached to adsorb to and then once they inhaled inhalation occurs that gets out to the alveoli, it gets across into the circulation immediately. And and you know, I can I can say something about the rate of absorption and compare it to other insolence too, so
Scott Benner 8:35
people don't get confused, I think I understand but like your lungs are just a great pathway to get the insulin to your bloodstream. 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 vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store G vo Capo pen and how to use it. They need to know how to use G vo Capo pen before an emergency situation happens. Learn more about YG vo Capo 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 GE voc glucagon.com/risk For safety information. 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. And 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 CGM like the libre three and Dexcom g7. 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, so just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do.
Dr. Blevins 11:18
It is okay our as it turns out, of course your lungs get oxygen across immediately quickly. And they they also deliver carbon dioxide back out. The lungs are sitting there they're delivering oxygen removing toxins, you might say are metabolic products in a way. And also people take like inhalers for their lungs to dilate the lungs, if they have asthma. They take inhalers for all kinds of things. But also it's a great absorption, Oregon, and things can get across into the circulation very, very promptly if they're delivered properly, and inhaled insulin gets gets that that insulin out there to the alveoli to be absorbed.
Scott Benner 11:58
Why don't we see more medications delivered this way? You know, I
Dr. Blevins 12:02
think I think there's been a big focus on medicines that treat like asthma, and and emphysema, things that are aimed at the lung itself. And a few medicines can go across the lungs, not every medicine, you have to have a small, relatively small particle. That's that gets across the alveoli. So I think you'll see more meds that are delivered that way. And and certainly inhaled insulin is here now. And you know, it's been out again, it's been out since 2014. And we look at it as something new because many times it hasn't been talked about really hasn't been used as much as it should be. And I think part of that was the initial I mentioned a while ago, the thing about the bond, the bond was a real inhibitor to use. And and then along came pins that made giving rapid and some more, more feasible and more doable. So the the excitement about inhaled insulin sort of faded. And now many times practitioners and people with diabetes, just don't think about it. I mean, I have people, unfortunately, I'm probably I'm a culprit too. When it comes to not talking to people unnecessarily about every single option, I make myself do it as much as I can. And now I talk to people about inhaled all the time, because it works so well. And we have now a very good data that shows that inhaled inhaled insulin can be very effective, versus injectable, versus injectable. And, and I could, I can say a few words about injectable. Of course, I mentioned earlier we did a study with the Frezza here at my clinic here in Austin, Texas, Texas, diabetes and Endocrinology, we do quite a bit of phase two and phase three clinical research. And so we did a study We've done studies with other insolence to and with the newer, more rapid acting injected insulins like and I'll say the name brand because people understand them. When you when you talk about namebrand T acid, which is fast acting as part, which is a fast acting Novolog. We did studies here with blue Jeff, which is fast acting LIS Pro, they're called fast acting, they're called Ultra rapid, but they really don't come close to the rapidity of absorption of of the F Frezza. And I can let me go through if it's okay. Let me just give you a few numbers. Yeah, please. Okay. So, there are three measures that are kind of interesting to look at when it comes to absorption of rapid acting insulin. One is time to first measurable effect. The other is, so the first effect it has lowering the sugar. You know, once you give a dose, it takes some time for it to have an effect. And when it comes to injected insulin, what delays the effect is the fact that it's given in the sub q, subcutaneous space and it has to break down into a single molecule of insulin before it can get absorbed. It's given typically and in in cluster of six like it's called hexamer. So when you give insulin, typical insulin sub q, the rate of absorption has everything to do with how rapid it becomes a single molecule, that single molecule can be absorbed a single molecule is called a monomer. So, you know, you want to go mono Marik as quickly as you can if you give sub q, because that's what allows it to get absorbed. That takes some time, even even the most rapid sub q insulins take time to get absorbed longer than a Frezza Frezza. Inhaled, it's into the system right away. It is mono Merrick to begin with, by the way, it doesn't have to break down, there's no subcutaneous tissue for it to break down into, it gets in right away. And that leads to another very important characteristic. And that is, it gets it also gets out quickly. It doesn't linger. And I'll tell you more about that. So time to first effect time to peak effect and time for the insolence return to baseline. The limit, let me give you some comparisons. Yeah. And if interrupt me if I'm not clear, and and you in the audience, you just make notes in your mind or on paper, if you want. And I'm going to, I'm going to go through those measures for a Frezza be asked and also loom Jeff, okay. And those are the best competitors, because those are the most fair competitors that have the most rapid li absorbed sub q insolence. So, time to first a measure of measurable effect of the middle dose of a Frezza is kind of a middle dose is 12 minutes. So it gets some pretty quick, the first measurable effect time to first a measurable effect of the ASP 17 minutes. So it's not as fast as a Frezza. But it's this relatively quick, first measurable and the same as for limb, Jeff 17 minutes. So that's that's interesting. Time to peak effect. So once it starts getting in, you wanted to get in quickly, right? Most people diabetes tell you I don't want I want my sugar to be affected right away. And I have to wait and wait. Well, time to peak effect is about 45 minutes for Frezza. At the the middle dose it was studied. So that's about 45 minutes. And you might say What do you mean 45 minutes? Well, what do you think's gonna happen with fiasco time, the first time to peak effect is 122 minutes. And loom Jeff has 138 This is right out of the product insert? I'm not. Right. This is right out of what is published, for people to see. So that's the peak effect is much faster with the present. So if you take it, you're gonna get an effect, more rapidly peak effect. What about duration? And let me let me just say, you may ask, why is duration important? Well, duration is really important because when you dose insulin, you really want it to act quickly. You don't want it to hang around because you can you can have hypoglycemia if there's a long tail on the rapid acting insulin. Does that make sense?
Scott Benner 18:10
Yeah, it also makes sense to me that if I needed to reduce again, I'd like to be able to feel relatively comfortable that what I did first is gone. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juicebox. The ever since CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days. I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link. You're supporting the production of the podcast and helping to keep it free and plentiful ever since cgm.com/juicebox.
Dr. Blevins 19:42
Exactly. And that what you're talking about you don't want to stack because once a once the shirt goes up and you're disturbed by it, you want to you you're tempted to reduce it, right hit it again, that might bring it down more quickly but unfortunately that insulin can hang around. And the detail of the first dose, the tail of the second dose can cause you to become hypoglycemic. And that is stalking. So the duration is a big deal that leads into what is the time for the effect to return to baseline of a Frezza. It's about anywhere from 90 to 180 minutes. And let's compare that to the other two. Remember, they're the fast ones. The fiasco time to return is five to six hours. Right? It is, yeah. And the time for limb Jeff, which is a great, it's a fine answer. And we use a lot of it, of course, but the time to return to baseline is 4.6 to 6.2 hours, we're not talking, you know, remember, a phrase is 90 to 180 minutes. So what you said is exactly right. You want the insulin in but you want it out. And if you want to reduce it, you want to be comfortable that that first, or the prior dose is not going to be hanging around to cause you to get low later on. Right?
Scott Benner 21:02
Especially if you know if you if you underdose a meal, for example, or it's fatty and you don't go after correctly, and then you do have to hit it harder. But then eventually that logjam inside breaks and the food passes through and it's no longer impacting your blood sugar. All the leftover insulin is just going to It's like a It's a lead weight than it is. I know, it's not part of what you want to talk about. But if I asked you to go over like Novolog, or or a pager, would they be significantly different than loom? Jeff and fiasco?
Dr. Blevins 21:29
Yeah, they're slower in and they're going to be slower out. Okay.
Scott Benner 21:33
They don't. Six hours still, though? Do they? know they do?
Dr. Blevins 21:36
They go six, seven hours really ration? Okay. Yeah, they do. And they peak later. Most people, if you ask someone who has diabetes, or even practitioners are right down the peak time of various of these insulin, they would they think it peaks sooner. And it doesn't the pay people with diabetes know, they take a dose and they know it takes a while for it to kick in. And they just were patient, and many times very impatient, though. And they'd like something that acts faster. And the fastest pencil on the planet is a Frezza. It gets in quick. And one of its big advantages is also and I'll just say it again. It gets in quick. It gets out quick. Yeah,
Scott Benner 22:17
no, it's a big deal. And let me stop here for a second to highlight what I think might be some people's can, like concern. Yes. What if anything about it, like is dangerous or concerning? Like it's the idea of inhale, I'm still listening to you and thinking like, Yeah, but inhaling something. And I don't know if that's based in just like, a nonsensical fear or if that's a real thing I should be worried about? Well,
Dr. Blevins 22:41
I mean, there are things that are cautions that people need to know about when they use it inhaled insulin. One is there are side effects potential cough can occur in a significant number of people, it tends to get better over time, I tell my patients when I when I start to monitor for, as I say, you may cough, and you may see some powder come out, it's okay. It doesn't mean anything. And nothing has gotten absorbed, I can tell them. That's the what, but the studies show clearly enough has gotten absorbed, if you cough, somehow, a cough can occur sometimes sore throat, which tends to be transient, I had one person who developed a very sore throat initially, and we thought we were going to have to stop the medicine, she kept taking it, it went away. And, and so there are certain people also who shouldn't simply shouldn't be taken it. And those are people who have some kind of any type of chronic lung disease like chronic recurrent pulmonary disease, that would be asthma or COPD. We don't we don't prescribe it for Frezza for people who have those conditions. And there are some people who are hypersensitive to human regular insulin too, of course, they have trouble with any insulin. And we also know that when people take a Frezza there is some reduction in a measure of lung volume called f e v one. And it can reduce a small amount, usually about 1% 30 or 40 cc's of lung volume reduction reduction when on the Frezza. Now, interestingly, when people go off the phrase, it comes right back, so it's not a permanent thing. But let me also put that into context, what 40 cc's of reduction? Well, what is the typical male female lung volume total, that's about anywhere from males have greater lung volume than female, but it ranges anywhere from 3.5 to 4.5 liters. And I would just say make it easy as four liters. And you know, that 40 cc's of 4000 CC's is it's it's tiny amount on percent. So, that is important to know people see that that the lung FEV one can reduce but it's it's really a tiny amount of what we do and it's important for everyone to know we do. Typically we do a measure of lung function at baseline, or at least when we decide to continue the Frezza that's called the FEV. One, it's a simple little test we do in the office, and there's a little machine I can hold in my hand that will allow me to get an FEV. One a person breathes into it. So we do it at baseline, after six months, and then about once a year, that's the current recommendation. And if there's a decline of over 20%, then we would discontinue the medication. So the safety is good that we know we know what kind of changes we might see. And we measure for them. Those are the primary sort of concerns there's people sometimes have, in the past have said, What about lung cancer with inhaled insulin? And let me just make a long story short and say that there were some there were some cases reported, one of them occurred very soon after person started. So it couldn't be related. And, and they're just really tiny numbers. And there's no sign or signal here that I can detect.
Scott Benner 25:56
Yeah. So stuff like this, am I right to say exists with almost every medication you take? So I mean, like, there's some people who are just not going to work well, for some people are going to have an adverse event that you have to discontinue because of, but is it any more or less so than other things? I mean, or I know, with injectable insulin, you can't just stop if you have type one diabetes, because I've interviewed people who have like significant insulin allergies. And it's very infrequent, thank God, but it's it's horrifying. And they had to just keep doing it. Actually, those people end around their problem by using a Frezza. In some situations, generally mean like, my question is, is this something that's more concerning than any other general situation? I put myself in with the medication?
Dr. Blevins 26:46
And Scott, my answer is, I think not. I think that there's been a lot of caution. Fortunately, as there should be. And careful evaluation of data as there should be. The route of administration is unique. To me, the greatest side effect or, or adverse reaction related to insulin is hypoglycemia. If I have an insulin that is associated with less hyperglycemia, then I'm going to be really happy. And I will say that not every bit some of the studies but the Frezza have have suggested lower risk of hypoglycemia, because it doesn't hang around so long. So to me, the greatest risk of insulin is hypoglycemia, be it inhaled or injected. And so finding a quick and quick out insulin for mealtime, or rapid acting, or for intervening when the glucose is high, is is an advantage. I still
Scott Benner 27:40
need a Basal insulin if I'm using a third crack, so I'm going to inject a basil. You do okay. And so this is this is for meals or affecting high blood sugars, or for somebody who's using a pump to bring out high blood sugar down. Are those the use cases that you say?
Dr. Blevins 27:55
Yeah, I'm gonna say yes to all of those. I will point out that the approval currently is adult for adults, it's not approved for children yet, there's a big study that's been conducted that that is looking at that possibility and don't have results yet. And, and I'm optimistic but I don't know yet. It's approved for adults with type one and also type two. So certainly the adults with type one have to have basil. Most of the people with type two will have to have basil too. But there's some people will talk to you that might not need it. But you're also exactly right on this is for mealtime to get in quickly and cover the meals quickly. You know, your when a person doesn't have diabetes, the pancreas doesn't wait. It doesn't pick the insulin at at an hour, it peaks it quickly. And this gets about as close to that as possible. So mealtime is is number one. Number two, yeah, if you're a person's low two hours after a meal, because of the short duration, they can reduce it. And we had people do that in the study, and people on pomps if they have a high reading, and they want rapid reduction they could use it to. And I'll point out in a bit that in the study that we conducted, we had people who went off the pump to go on the study, and they went on to a Basal plus a Frezza. And many of them afterwards decided that they would want to stay on the injected insulin with the A Frezza. And we had a couple people who are on on pumps that decided to use the pump the automated pump as a background and use it Frezzer for the mealtime because of the rapid
Scott Benner 29:29
effect. Is that a thing that insurance is covering our
Dr. Blevins 29:33
results when it comes to getting things covered recently, this has been better and better. Good.
Scott Benner 29:37
Yes. Do you see? I might feel like it's off base for a second but I've now interviewed three people who probably have Lada who started a GLP and now are almost completely off of insulin are completely off of it for that for the time being I imagined but they still see excursions that their meals and they get like some of them are afraid to use insulin When at the excursion because like you said, the the insulin lasts so long would this be a better fit for that? Do you think?
Dr. Blevins 30:05
I have to admit I haven't used it in that way. But I will tell you that your thinking is exactly right. It's quick and quick out. And when a person has beta cell failure near failure, or you know, impending failure, the first thing to go is the postprandial. And the sales just can't keep up with the need. And so yes, the present would be a reasonable option in that in that case, and so I think you have to You're doing the right thing, Scott, you're thinking through, and then that would be one, wrap it in wrap it out, that would be a good potential. For person has a high sugar at bedtime? Frezza gets in gets out doesn't hang around overnight, make different times? Yeah,
Scott Benner 30:50
everything I think about insulin is about timing and amount, like meeting need with with impact. That's just kind of how that's the the entirety of the way I think about managing diabetes. So yeah, it's interesting. Approved for type ones and type twos. Yes.
Unknown Speaker 31:06
Okay. It is.
Scott Benner 31:07
But adults, what is that 18? And over? Or what's the cutoff at the moment,
Dr. Blevins 31:11
it is adults 18. And over, all right, and we're hoping for an approval, it goes down to much, much younger, and it would seem to be a very usable treatment for the pediatric population, because it's, again, it's discrete, it's quick, and you get rapid response to hyperglycemia. And that that just really fits the PD population, but a study has to be done. And then approval has to be obtained.
Scott Benner 31:37
Are there smaller instances of low blood sugars with a Frezza versus injectable?
Dr. Blevins 31:42
You know, there have been a number of studies that have looked at that. And I could go through them by name. But you know, One study in adults with type one showed that Frezza as rapid acting insulin, reduce the frequency or kept maintained it or reduce it just as well as in that in that study, they were using actually insulin as part which is Novolog. And also shown also in people with type two, and there are a couple of the studies have shown a reduction in hypoglycemia as well, because of the shorter duration of action.
Scott Benner 32:12
Okay, what's interesting, am I missing anything before I ask you to move on to the to the study?
Dr. Blevins 32:18
Well, I can I can say that. There are a couple things I might talk about the dosing?
Scott Benner 32:23
Yeah. Oh, please. You know what? Yeah, how did that slipped my mind? That is the most confounding part of this. And even when I asked people, listen, I asked the CEO of mankind, I was like, explain the dosing. And the explanation feels a lot like art, and not a lot like science. And I get that insulin is that in general, but I guess in a world where people are used to hearing my insulin to carb ratio, is this my insulin sensitivity is that that means if I do this, then this is how much insulin I use. This seems vague, I guess. So how does it fundamentally get used in a real world situation?
Dr. Blevins 32:57
Well, let me explain some of the dosing when I go to talk about that study, because I think that study helps to find the right way to dose. And that's why okay, but let me also point out that a Frezza, comes in three doses. One is called a four unit one and I say is called, and I'll explain that in a minute. One is called a four unit, one's called an eight unit, what's called a 12. Unit, the FDA requires mankind to assign the number to the cartridge of relating to the amount of insulin in each cartridge. Okay, that makes sense. But in fact, when you inhale, insulin, some of it gets caught in the inhaler a little bit, a little bit, get caught, gets caught in the oropharynx. And a little bit get constantly gets caught in the upper airway, so it's not going to get absorbed. And so what I tell patients is their three doses, four, eight, and 12. And you can't imagine how many people tell me Oh, four is way too much for me. And I say, Well, it turns out that for as to, when it comes to the amount that gets into the absorptive area of the lung, I'm going to also tell you, that is an estimation, but it works for is to eight is 412 is six. So if you are on four units pre meal, and you're going to change over to a Frezza, do you dose the four you're going to cartridge, and you might do the carb count this, I'm just gonna say if you're on four units, most time before meal, you use the four unit cartridge. And the answer is you can but your sugars not going to do as well because there's really only two units. So we tell people to use that conversion for us too. And by the way, this seems a little confusing, but I've given this conversion to so many people now. And the next visit, you know what they do? They come back and say remember for us to hate us for that. They understand it very well. And it's very straightforward for us to eight is for 12 is six and now that may have to be adjusted. That ratio may not be true for everybody but that works. So you can get people who are very, very sensitive on a four unit cartridge, and they're really just getting about two units. And that works. And then people who have to take more than, like, if they need, like eight units, in reality, the eight units of their usual insulin, then they would have to take a 12. And then nothing would have to take a four to get up to eight, because 12 is six and four is two. And they can do that they can take one Hila inhalation, then go out, cartridge switch really quickly. And inhale again, it's very fast it works.
Scott Benner 35:33
Do you think? I mean, you've spoken to a number of people, obviously, who reuse it? So what's the response? You get back from people using a Frezza? Is it? Do they find it easier? Do they find it more difficult, but worthwhile? Like, what's the what's the user experience? Without,
Dr. Blevins 35:50
we learned that the study, quite a few people who actually had been on the pump before actually decided they wanted to stay on it forever, either with or without the pump, either with with the pump or with Basal insulin. So So Pete, some people really, really like it, not everyone, it's not for everyone, it's an option. And, and the the critical thing here is that we need to be talking to people, we practitioners, we people, other people, people who have diabetes, need to be talking to people about about this, it is an option. And people should, should be exposed to all of the options available. I know that's one of my jobs in medicine period to say, Hey, these are things we can do. And and I give people samples, I let them try it. And if they like it, we move on. Lots of people want to get the prescription after they try the sample. I tell them about it. So a lot of people really do want this type of insulin activity. Some of the responses I've gotten have been, I want to continue it. One, the response I got from a somewhat elderly gentleman, there's no age limit on the upper end. In the end, he told me which which he said no one told me that an option like this existed, and I felt very badly because I'm his doctor. And that was my thing. He was he was sort of a little bit indignant, and I realized that I'm going to change the subject here. But he's doing really well on it. And I've had a few people say, is this insulin new? Because they like it. And they're why haven't we done this before? And another person just said, simply this kind of same thing. Why didn't we start this before? This was a personal study, not a person I was taking care of, as it turns out, in my own personal practice, but when she she volunteered for the study, and she says, wow, this stuff has this effect. Why didn't this get started before? So I Yeah. And some people say, you know, it's not for me, I'm coughing, they have the side effect. It's not for everybody. And some people say, Well, I like the way it works. But I really want to get back onto my pump. And that too, so that we had quite a few people. I could give you some stats on that here in a bit. Yeah, I
Scott Benner 37:56
imagine that that's just going to be the case with everything. But I think to hear that if I begin to take it and I get the call off, and I don't like the call off or it doesn't dissipate, eventually, stopping puts me right back to where I started again. Is
Dr. Blevins 38:09
that correct? That's right. Yeah, that's That's exactly right. So nobody's
Scott Benner 38:13
going to experience permanent damage. As far as the studies have shown or your experience.
Dr. Blevins 38:19
That's exactly what the studies show, when it comes to the FEV. One, that lung volume thing, and the cough will go away. As soon as a person stops, the med sore throat tends to go away. And so that would go away to You're right. You're exactly right. Yeah.
Scott Benner 38:31
For me, personally, I can tell you that, if I didn't have a lot of good information, when I started using a GLP medication, I can see that there would have been times where I would have stopped. I would just said like maybe the juice isn't worth the squeeze here. But I do know now that sticking with it was really was important. And you know, any of the kind of earlier side effects that I had really are gone. I'm doing 12 milligrams of zap bound right now. And I don't have any nausea at all. Well, like nothing. So yeah, that's great. Yeah, it's, it's sometimes you just your body's got to get accustomed to what's happening. Am I right about that, too, to equate those two ideas? I
Dr. Blevins 39:13
think so every medicine has potential side effects, and effects. And sometimes the side effects are not tolerable, and then that that dictates what happens. But many times the side effects are known, tolerable and go away. And, and you get the effect. So it's important. Every medicine has a benefit and a risk. So it's important that you look at medicines, just the way you're talking about these outbound. Look at medicines that way.
Scott Benner 39:40
So when you presented at Ada, is that where you presented the information about the inhale study? Yes,
Dr. Blevins 39:46
I along with a number of other excellent presenters. We had about an hour and a half session at ATA a few weeks ago. Seven presenters got 10 minutes each, and amazingly stayed on time. That doesn't mean Are we presented the inhale three study? What have you
Scott Benner 40:03
not said so far? In our recording the from the study that you think people would be interested to know about Skogafoss Okay,
Dr. Blevins 40:09
let me walk through the study and a real general kind of way. Yeah, yeah. Because the study is in people that are we take care of in practice and and people who agreed to go on a study and some of them took a bit of a leap. Because automated insulin delivery on the pilot with a pump, and these people, you wouldn't expect to go on a study like this. And then the people took a leap as well, some some of them had never heard of inhaled insulin. And one or two had been ordered before and they'd gotten off so they could still participate in study because it was it was they got back on it. It really is very typical patient types in the practice. And these were people with type one diabetes. This was a study that was done around the country, by the way, 19 sites from Jocelyn I won't name everyone, but I'll just say Jocelyn northeast Mount Sinai up in the Northeast University and University of North Carolina, Atlanta, and also Texas, diabetes and Endocrinology right here at Austin, a group in San Antonio diabetes and glandular UT Southwestern Barbara Davis did it Las Vegas, endocrinology Sansom, diabetes, Loma, Linda University of Washington, all over the country, Mayo to Northwestern, and all over all over the country, 19 sites, and the the entry criteria was people had to have type one diabetes, and they had to be adults, they could be on automated insulin delivery, they could be on just a regular pump without automated, they could be on multiple daily injection, they if they had asthma. And just to emphasize this, if they had asthma, or history of lung cancer, they could not be on the study, it turned out that about 48% Were on automated insulin delivery to start the study. Now, the way the study goes is that people are going to be placed on degla Deck, which is true SIBO plus a Frezza. Or they're going to be left on their usual care. It's going to be about, you know, half and half. So that's nearly 50% of people on pumps. Now, what does that tell you? I think that tells you that though, we love pumps, and I love pumps. Not everyone who pump is just totally enamored to the point that they want to go on forever. And they wanted to explore something maybe a little different. And that's kind of interesting. And we should be open to that possibility. And sometimes I think we're not. So most of the pumpers it turns out, we're on the tandem or the Omni pod. It turned out there about 123 people that were randomized 62 that means of course, they're put into one treatment group or the other about half into again, degla deck plus Frezza. And we call it in the in the presentation technosphere insulin because we're not supposed to use brand names in front of a group like a continuing medical education group that the ADA, our usual care. Now usual care was I stayed on what they were on. And it was a 17 week study, we did try to titrate the doses and the way we calculate the dose of the Frezza was that we would multiply the usual dose by two and then we would round down to the closest dose of a Frezza. So bottom line, we were doing exactly what I mentioned earlier, we were doubling the dose of a Frezza recognizing that only about 50% in each cartridge gets absorbed. And we did a what's called a meal tolerance test at the first of the study. And the people on the Frezza took a Frezza beforehand. And the people unusual care gave the insole however they normally gave it afterwards and I'll tell you about that in a minute. The baseline anyone see when people entered the study was about 7.6 With of course some variability but that's kind of the general part. I can tell you with the the baseline meal challenge that we did, again, the reference versus the usual the glucoses were clearly lower out to about 9120 minutes for the people who got it for so I could go into a lot more detail but it's the present gets in quickly. stops
Scott Benner 44:07
a spike. Yes, that's it. Yeah, it gets ahead of a spike right by the end without having to Pre-Bolus at all.
Dr. Blevins 44:14
Yeah, that's right. Okay. That's right. They didn't have to they gave the insulin right when they started to eat thank you for pointing that out.
Scott Benner 44:21
And yeah, I mean it's a big deal because it takes away from that having to like remember 1520 minutes depending on what my blood sugar is etc and so on. So a lot that's right. Yeah, yeah,
Dr. Blevins 44:32
yeah, that's exactly right. One of the people who I know pretty well who was on the study would be in a various meetings and he could just kind of whip out his little inhaler and dose himself right before a snack or eating and and he didn't pre Pre-Bolus did not do that. Is
Scott Benner 44:49
the to ever too much. The two unit cartridge does it is it ever too much where people are like, Oh, I have two more than I want to because I can't go lower.
Dr. Blevins 44:58
You know it it'd be but I have to admit, I haven't seen that happen. It's the four the four unit is the two is what you're talking about. Yeah. And that's a such a small amount. I have people who are very sensitive, I saw someone early this morning is on a Basal of like point two, or like actually reduced it a little bit. So, you know, plenty of people with type one are very insulin sensitive and many are, are really almost type two ish in their in their insulin resistance. So a lot of variability.
Scott Benner 45:27
Okay. All right. Interesting. God, I'm sorry. I didn't mean to cut you off?
Dr. Blevins 45:30
No, that's a great question. And now in terms of so that's the meal test. That's one one outcome, the other was a one C. So let me let me just pose the question to you and and the people who listened to this? And do you think that inhaled insulin with Basal insulin given one time a day placebo degla deck as a background could compete when it comes to a one C with an automated insulin top?
Scott Benner 45:52
I would think that anything that stops a meal spike, and can quickly defeat a stock high blood sugar without causing a low that would cause me maybe to treat and rebound high would have a better chance. Right? Yeah, that's my expectation.
Dr. Blevins 46:11
Yeah, well, you're you're you're right on, I think there were hopes that the ANC would be lower with the president because there was reason to think it could be competing against not everyone who was on automated insulin delivery, that we are the automated insulin pump on and the control group. But many were, it turns out at the end of the day, he was he was the same in both groups, really. So it was an A Frezza was not inferior, that, that I think that's quite an achievement. And there's more to it, though, when you delve and kind of dig into the actual data. And bear with me here, I'll try to make this as clear as I can. The proportion of people in the study, who achieved a one C levels below 7% 30%, with the Frezza 17% with usual care, which of course included the automatic pump, and 21% of those on a Frezza had a go and see improvements of point 5% or greater 21% versus just 5% with usual care. Now you're thinking, Well, how did the one seed turned out to be the same that? Well, it turns out that some people actually got worse. So 26% of people had about a point 5% worsening with the Frezza compared to just 3% of usual care. And and the bottom line here is that not everyone does better with a Frezza. Or as well. And you really have to be someone who is willing to actually dose sometimes between meals when you have a high and and be ready to do that. And is that
Scott Benner 47:48
what you saw that people would just kind of stare at high blood sugars and not do anything about them?
Dr. Blevins 47:53
Yes, yeah. Sometimes, we did instruct people to study if their sugar after a meal. And after the previous dose was over 140, then they could dose again, at one or two hours after, because for two reasons. One, we're aiming for very good control. Two, we know it doesn't hang around, they're not going to stack their chances stack is much lower, put it like that. Many people did that. And we're watching their numbers, and we set their alarms and just do it. And some people just just didn't want to do that. And that's pretty typical what we see in practice in general. I mean, we do see that,
Scott Benner 48:29
Tom, that's almost an argument for automated insulin delivery, because at the very least, if you go to a 224, your algorithm is going to keep pushing when the person maybe who's either unmotivated or distracted or whatever, is not going to do something again. Yeah, yeah.
Dr. Blevins 48:46
Let me say something about that. And that makes logical sense to me, too. It turns out and I'm, you know, asked me in a minute, that quite a few people who had been on the automated pump, who were on the in the Frezza treatment group actually stayed on the Frezza afterwards, so it's like anything else? This is an option. Sure. It's really not designed to compete with the pump. But this was a this was a brave study in a way to actually allow it to compete against automated insulin delivery. Actually, quite well. Yeah. And quite a few people decided that it was in their interest to continue on it would
Scott Benner 49:24
occur to me that there's probably like three outcomes here right? Either I listened to the direction and you know, either stayed where I was, or or did better, and I don't have to wear a pump anymore. So great. Or I did the minimum I needed to do and even my you know, my one C went up a little bit but I love not wearing a pump. So I'm you know, I'm down for this if that's yeah, or I guess the other option is somebody who's super motivated and really paying attention could probably terminate one seeing the fives with this if they were if they were paying attention and then on top of it, sure, yeah. Oh,
Dr. Blevins 49:59
I think you're I think you're right. And this idea of pumps are great automate is great. I love them. We've done studies with them, we use them in clinical practice, we use every one. They're wonderful. I mean, it is so nice, yet, many people really don't want to have the apparatus on their person. Yeah. And many people would just as soon have been, I learned a new term, a pump Keishon, you know, and, and sometimes they want it to be pretty long. So if there's an alternative for them, and gives them the ability to interact, they may take it. So it's, I would never have thought a person with a pump was a candidate for a Frezza. But I know better at this point based on the study. But your point is a good one. I mean, some people really do better do just very well, overall with the automated insulin pump right
Scott Benner 50:49
now. I mean, listen, I It's my expectation. I mean, I've been making this podcast for a decade now. And it would have been easy for me in the beginning to get lost in the idea that like, Oh, everybody wears a pump, or everybody tries really hard all the time. But that just seems to be the people that the podcast attracts either people who are desirous of living that life or wanting to get to it right. But I don't know the numbers. But I wonder if you do, the percentage of type ones wearing pumps is not as high as I would think it is. Is that correct?
Dr. Blevins 51:20
It's pretty high. It depends. It depends can depend a lot on various regions, practices, things like that. But I don't know the exact percent but it's got it's at least two thirds at this point. That's fascinating. Yeah, it is fascinating. Leaves a high percentage of people that are really that aren't on you would think that the technology would kind of bowl people over. But there are reasons not to wear a pop. I mean, one is, it's something you have to wear. The other is the catheter one way or the other is in constantly, and life situations like going swimming, and some things are just come more complicated things getting pulled off falling off and things like that, like catheters and that too. And this gets back to the idea of option. We should be giving people all of the choices and letting them experience and let them decide and not just say, Hey, you are a pumper, son. Let's do it.
Scott Benner 52:16
No, I'm gonna propose that yeah, of that. Yeah, yeah. Yeah. Yeah. There's a lot of different ways to hack your health situation. And at the very least, you deserve to know what they are. That's right. Yeah. No, I agree with that. Totally. Totally. What are we missing here? Anything.
Dr. Blevins 52:33
One thing that was really interesting about the study is that it's a short acting insulin. I've said this before. And we found that when people dosed at bedtime, they did better than theirs. People are so cautious, and had been so cautioned against dosing. Couple hours later stalking, and people have have been Tolo, don't take that insulin Bolus, don't take much at bedtime, you'll get low overnight, because the current sub q insulins hang around even the fastest, as I pointed out, and I talked about the fastest while ago, they hang around. And if you dose at bedtime, you could get in trouble. This one, you really need to guide the insulin at bedtime. And it's a big deal. And this one, inhale gets in and gets out as not going to hang around. And so we did learn that that dosing a bedtime was really important when it came to improving control. Now,
Scott Benner 53:27
I mean, I preach all the time to people, first of all, you can steal a onesie overnight, it's the easiest time because there's no carbs usually. And you know, making a thoughtful Bolus at a meal definitely stops you from having to, to address it again later, which is very likely going to lead to a low if you're not really adept at it. So yeah, but in for those people who are missing, and coming up on bedtime, they're very willing to go to bed with a 200 blood sugar or greater to avoid the risk of even getting low overnight, and then they'll start their next day high. And then then it's just a perpetual circle they can't get out of which is I think, you know, a lot of the ways where we start to accept Oh, my a one C seven. Oh, it's a it's okay. You don't I mean, there's nothing I can do about it like that minds. The mindset around insulin is and, you know, lack of tools and understanding are pretty much the drivers and in poor outcomes, I think, at least Yeah, yeah. I see the value 1,000% of being able to just say look, I have a 200 blood sugar here. I can pump this in real quickly. And, you know, an hour from now 90, would you say 90 minutes, maybe maybe three hours from now at the at the at the greatest? This? This impacts go on for me now. Sure. Yeah.
Dr. Blevins 54:49
Can we get it's gone. You could reduce it in one or two hours. That's what we found that was safe and it worked. And if you've got handy to guide your sugar down, you could guide it down with the quick hit And that devastated after meals that between meals bedtime, and then people learn to be comfortable with that because they've learned to not be comfortable. Like I dare you to take another dose of sub q insulin two hours after you eat and not get low or I dare you to take it a bedtime, we always have people take a bit of time to guide their sugar was sub q2, but it's a little, it's just a little different, you have to be cautious because the insulin does hang around, you don't want to leave the glucose high. With either type of insulin.
Scott Benner 55:29
I have a specific way I talk about snacking, because I genuinely believe both things. First of all, it's not stalking if you need it, it's bolusing. But that infers great settings and a great understanding of timing on your part. And then you know, otherwise stalking is 1,000,000% going to lead to a low blood sugar later, that is probably going to take more carbs than you imagine to stop. And yeah, and so there's you have to keep until you know what you're doing. The idea of bolusing inside of the window where the previous Bolus is still active is, you know, it's an issue because you're you very likely may do it wrong. Once you know what you're doing. I just think it's bolusing. At that point, if I know I need it, then then you use it right? And that doesn't lead to a low, which people also have trouble. Like, when I talk to people, you can see them processing and they're like, Well, I ate and I ate again an hour later. I'm like, wait, we'll be sure Bolus again. And they're like, Well, I get low. And I was like, why don't you get high if you don't? And they're like, yes, that's a person who knows their settings work. You don't I mean, Sakhalin, another person who doesn't just I talking to somebody the other day that said that they're on a pump, they see people on pumps who see doctors and still have a one season double digits. And I think How is that even possible? They don't have a good lead into this, the you know, they their settings are way off, or their understanding of insulin is significantly off. Right. So do you think that a Frezza is more of a ninja level? Or do you think that everybody could use it successfully?
Dr. Blevins 57:00
I think a Frezza. But let me let me let me go. Let me back up. I like that analogy. I think a Frozen is a one of the borders the Greenbelt. Okay. That's that's a starter, I think a presidency we talked about a green belt, and it may make a person a black belt. If if the if they use it the way it can be used? I think it goes all the way up, I think is something we should be talking about from the get go. Let people have the option of it. I don't think wait till any particular time. So now you're a Frezza person, I hope I interpreted your question. Some way did somewhat closely. Okay. I think it's something we need to talk to people about right off the bat, if it makes, if it fits their personality, their life, their thinking, their approach, then they need to know about now. And and frankly, you know, they really need to try it. We try everything along the way. Anybody on a pump has been on probably every insulin basil, you can imagine every bowl as you can imagine, but mostly, most likely they haven't been on present. That is something we need to grapple with. As people who prescribe and talk about options, people should have the options and should should be allowed to try them
Scott Benner 58:15
you find the doctors if they don't understand it well, and the whole force to this is that, like might stop them from understanding it. Like, are you fearful, I guess that this won't get the foothold it deserves. And the community
Dr. Blevins 58:28
and the in all societies already has had that happen. I do think that this inhale three, study. And I'll tell you more about the kind of what we learned here. Finally, as I close out talking about it, I think it really gives us a foundation better than ever. We already have foundations. This is not like the first study, there have been a lot of studies. This is a really good one, though, that tells us about the here. And now. What about against automated insulin delivery? How do you use it? What are the proper concepts that we learned from ourselves and from our patients mainly? And you know, how do you use it? And so I think I think you're right, I think that people don't understand how to use it, therefore they shy away from it. That's one thing. Second thing I think we've made these assumptions that people on pumps want to stay on panels forever. We could keep talking about other insolence for them. Thirdly, there have been a reimbursement issues that people have sometimes knock their head against a brick wall when it comes to reimbursement that's getting a lot better in our experience. And frankly, if we think an option is good for a patient, I'll say we need to go and go to bat for it and we do we do after the what I'll call the GLP one wars when it comes to getting things reimbursed and paid for I think we're pretty good at going to bat when it comes to getting things covered. So I think that whole reimbursement things better now to to there are a few kind of little blocks that have occurred along the way. Yeah, knowledge and reimbursement that that are better now. And I think This study has taught us so much. And our next job is to get all that information out to everyone in the in the people that prescribe insulin world.
Scott Benner 1:00:08
Yeah, I agree with you. I'll tell you, I took my daughter's endocrinologist the better part of two months to talk our insurance company to covering her GLP medication. Right. Yeah. And it was it was more about being on the phone talking, like sending the sending what they asked for worked at first, but then of course, a month later, they were like, we'll do it again. And you know, Mike, I'm like, are we doing this every three and a half weeks, we're gonna have to reevaluate like, what, what's happening here? So she finally got them on the phone and walk them through it. And they said, What did they give her? They gave her a three year window for GLP. Really, yeah, they're gonna reassess or they're gonna reassess her again, in three years.
Dr. Blevins 1:00:48
That doctor is very convincing, I must say, very persistent. And I, I admire that we do the same, we tried to do the same thing here. And, and with GLP, ones for people type one, or Frezza. And it's just the world we live in. I mean, growth hormone. We're, I'm an endocrinologist. And I prescribed things outside of diabetes, of course, and, and cholesterol meds that are hard to get. We're just used to it. And unfortunately, we really have I mean, fortunately, we know how to do it. But unfortunately, we have to go to bat repeatedly. And we just we do that. She's
Scott Benner 1:01:21
interesting, because she's not she wasn't born here. So she has a more less American idea of how things should be. But she's been here long enough that she understands how things work. And so I think I think not growing up in the system allows her to fight against it easier, if that makes sense. Yeah, but anyway, it does.
Dr. Blevins 1:01:42
Yeah. That's impressive. My hat is off to her. All right, good. Finding
Scott Benner 1:01:46
her was one of the luckiest things that ever happened to my family, actually, Dr. elevens, I really do appreciate this. I needed somebody who could talk about this. And I learned from the GLP conversations with you, you are the exact right person to talk about things like this with so I hope to have you back again on other topics. Thank you.
Dr. Blevins 1:02:02
Do we have a few more minutes? Oh, my gosh, if
Scott Benner 1:02:05
you do, I was over your time I was trying to let you go.
Dr. Blevins 1:02:07
Let me let me close out with a few comments, some of which are redundant, truly. But and then I'm then yeah, it's great. This has been fun. This is a whole talking to you is a lot of fun. I tell
Scott Benner 1:02:19
you, Tom, you and I seem to get along very well, I would I expect you're going to be on this podcast for years. So thank you,
Dr. Blevins 1:02:25
I'd be happy to I may have to put off the screening one a little bit. I've just got so much going on right now. But anyway, back to inhale. You know, some things we learned in the inhale three study. And this is a little bit of redundant. But these are a big deal. And I hope to get this information out as soon as possible to people who prescribe insulin, people who are first of all very involved in their own self management, they're perfect for Frezza. And if they want to reduce hyperglycemia, this is a good way to guide the glucose down. And people who would like to try something other than a pump. This study showed this was a very, very, very good alternative. And this thing about rapid in rapid out that is just golden. I mean, we could read those people, one, two hours after a meal, and we didn't see an increase in hypoglycemia at all. And we had actually people you'd be some people roll their eyes here, but we had people set their alarm at 140 and dose over 140. And I'll tell you not everyone did that. But the ones who did did well. And and so the people are gonna have to be, I think, okay, with multiple or extra dosing. Yeah, but this is something they've wanted to do for a long time. I think
Scott Benner 1:03:33
if people you're talking to on this podcast, my daughter's high alarm is at 120. So you're not scared? You're not scared. And then with 140 Don't worry, I'm
Dr. Blevins 1:03:41
so well, thank you for saying that. Yeah, because I felt I was imposing on people on the study, I'd say set your alarm at 140 and kind of look at him. Like, are you going to throw something at me? But no, I'm glad to hear that. That's so good. Because it works. So well.
Scott Benner 1:03:53
Yeah, I'd rather use a little bit now than a lot later. That's just the way I think about it. So go ahead
Dr. Blevins 1:03:59
and the other party or is that people who completed the extension phase, there was a second 17 weeks that I don't have information on yet but afterwards we asked them Do you want to continue or Frezza and I can just tell you if they were on multiple daily injection and before the study, and they were they were we said hey, you can go back to whatever you want 60% wanted to stay on Frezza if they were on pre study automated insulin delivery the fabulous automated pumps water No, I'd love to ask people what they what percent of people they thought would want to stay on a Frezza it was 43% and and then if they were on just regular old pump without the automated features 60% wanted to stay on a Frezza now maybe they selected themselves out to try something different. Okay, maybe so but that was amazing to me. Yeah. And and so why would you use in conclusion, why would you use a Frezza patients choice is number one, and number two, we talked about it in and out. It's discreet and inconvenient. There was a day when I've said the people that are the best candidate are people who are needle phobic, and people who had lipo hypertrophy, you know that fatty buildup that occurs when people give injections in the same place. But really, those are the bottom, they're not low. There are good reasons but they're at the bottom of the list patients choices number one, and and then we talked about the conversion thing. And, you know, in the study, we allowed people to Lex the insulin, we learned that if they're going to have a big meal, that could take an extra four, if they're gonna have a small meal, they could subtract from their Frezza dose, and then they can adjust their dose just the way they do with other types of insulin. And we did have people correct 60 to 90 minutes after they, they ate. And we had them sometimes interact with their rate of fall that they're seeing when they dose rate of rise too. So maybe a little less if it's falling, when there does seem a little more if this rising. And and I'll just also comment that in our, our site here, we had, I think eight or nine people on the study here in Austin, and we had about four of those who wanted to stay on. Oh, that's right, we had we had quite a we had more than 50% Who are to say on a Frezza. At the end of the study, whether they were on MDI, the automated insulin palm, people liked it for quite a few different reasons. And so it's easy for travel exercise, quick and quick out. And you could talk about scenarios quite a bit. So you
Scott Benner 1:06:29
don't have to refrigerate it when you carry it. Is that right? Does it have to be refrigerated when I carry it? Once
Dr. Blevins 1:06:35
you take it out of the blister pack it can say room temperature for about three days. Okay, now you would want to you don't want to keep your your stores refrigerated. But the supply that you're going to use the next few days can be at room temperature. Yeah,
Scott Benner 1:06:50
yeah. And thanks to the people who do the studies, by the way. And, Tom, if people want to jump on a study, can they contact you, I know you, you seem to have some running almost all the time.
Dr. Blevins 1:06:59
You know, the present study is over. And I don't have another phrase instead of yelling away, we are doing some studies and people type one diabetes who are on, especially on multiple daily injection of medicines that are kind of like ozempic, the GLP ones, and we're trying to get a drug approved for type one, that'd be great with GLP. One. And you know, as you said, your daughter's practitioner had to, you know, really go to bat to get it approved. And hopefully that could be a thing of the past in the future if we get something approved. So we're doing studies and people with GLP ones, we're doing a study with a medicine that might help reduce hypoglycemia, and people with type one as well. So if if anyone in the Austin region is interested in talking to us about studies, we'll be happy to talk to them. They could call the Texas diabetes and Endocrinology and ask for the clinical research department.
Scott Benner 1:07:48
Nice. That's excellent. Thank you. I really did I let you get everything out. You did. Great. Would you hold one second for me? I just want to ask you something when we're not recording. Yes. Great. Great. Thank you so much for doing this again. I really appreciate you Scott. It's a pleasure what.
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#1265 Snap, Crackle, Pop
Adrienne was diagnosed with Type 1 diabetes during her pregnancy. She also has a Bipolar II diagnosis, which she isn't convinced is correct.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1265 of the Juicebox Podcast
today's an interesting episode with Adriana, she's 29 years old the mom to a little boy. And she was diagnosed with type one diabetes about 19 weeks into her pregnancy with him back in June of 2022. Since then, she's gotten a bipolar diagnosis, which she doesn't particularly agree with. You're going to hear our entire conversation and then after that, another conversation I had with her later, so she finished recording with me and then thought of other things that she wanted to say, I let her come back on to complete her record. 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. Don't forget, if you use my link drink ag one.com/juice box you'll get a free year supply of vitamin D and five free travel packs with your first order. And if you go to cozy earth.com and use the offer code juice box at checkout, you're gonna save 30% off of your entire order. And if you'd like to help with type one diabetes research and you're a US resident who is a type one or the caregiver of a type one, all you have to do is go to T one D exchange.org/juicebox. Join the registry and complete the survey that should take you about 10 minutes, your answers are going to help T one D exchange.org/juicebox podcast. This episode of The Juicebox Podcast is sponsored by hungry route. The easiest way to eat healthy, hungry route.com/juice box. today's podcast is sponsored by touched by type one check them out on Facebook, Instagram, and at touched by type one.org. If you're looking for an organization who's helping people with type one diabetes, you're looking for touched by type one. Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jaylen, he was diagnosed with type one diabetes at 14. He's 29. Now he's going to tell you a little bit about his story. To hear more stories with Medtronic champions, go to Medtronic diabetes.com/juicebox or search the hashtag Medtronic champion on your favorite social media platform.
Adrienne 2:27
Hey, my name is Adrian. I'm 29 years old, a mom to a little boy who is almost a year and a half and I was diagnosed type one at 19 weeks pregnant with him in June of 2022.
Scott Benner 2:38
Let's go Hold on a second. Could you start in hot? So you're in 2022 You're pregnant?
Adrienne 2:46
I am here's my first and only child, okay. And I was actually supposed to be going into the OB office to have the gender reveal ultrasound. But I walked in and they had mistakenly booked me for a regular doctor's appointment. And my doctor was not on staff that day he was at the hospital delivering and so they asked me if I wanted to see someone else that was on the team that day. And I you know, I was kind of irritated by it. But I was like sure might as well. So I went in and saw a nurse practitioner who was great, but standard procedure for any doctor's appointment there at the OB is to do a urine sample before you're seeing. So a nurse came in and she's like, you know, we saw something that kind of flagged us and your urine we want to check your sugar. So she did a finger poke and I came back like 391 I think it was and I could see she was concerned. So she poked again. And she's like, okay, we're just gonna check to be safe. And my second pick was 457. So she left and unfamiliar face poked back in and it was the nurse practitioner who never bothered to introduce herself. She said, What did you have for lunch today? That was where her first words to me so that well we did break the ice and sheepishly admitted that I had given into a pregnancy craving for Taco Bell. So that was great. But she said that her blood sugar had she eat and Taco Bell probably wouldn't have been over 120 And so that was her way of telling me that I was diabetic. She said that they didn't think it was gestational it was too soon into my pregnancy for that to have developed was her gut instinct, but they were going to send me home over the weekend to check before and after meals, that type of thing. So I basically just broke down crying there in the office asked zero questions and left there with no idea what I was doing. But they had me monitor over the weekend. And things kind of just rolled from there and thankfully my partner works in pharmacy so he was able to bring home all of the supplies I needed that same day was able to kind of push things through pretty quickly. So that's how the story started. And
Scott Benner 4:42
long story short, your baby's name is chalupa? Is that correct? Right.
Adrienne 4:46
That's exactly right. No, his name is Lucas. Oh,
Scott Benner 4:49
does anybody know what chalupa means? Like? Is that a real word? Is that like a word that like Taco Bell made up? Right.
Adrienne 4:55
That's a good question.
Scott Benner 4:56
I'll figure that out while you're telling me about everything that's happened. Oh, no, it's a real food. Several specialty dishes of south central Mexico. Okay, thank you. I thought maybe it was a marketing word. You said, That's how she told me I had diabetes. She didn't say to you, you have diabetes. She just said, that's not what my blood sugar would do. And I'm super healthy.
Adrienne 5:17
That's how she led off was that, you know, that's not how her sugar would have responded. But she said, You know, I think you are a type one diabetic. Unfortunately, this is not something that goes away. You know, I had heard of gestational diabetes. I wasn't super familiar with it. And I, you know, just kind of, I guess, asked again, that was my only question was, are you sure this is not gestational? It's not going to go away when he's born. And she said, No. And at that point, I pretty much just couldn't pull myself together enough to even ask her any questions. And she just apologized for having to break this news to someone that you know, she had never even met before. She was super sweet. But that was a shock. Nobody in my family has type one. No autoimmune that we're aware of. I do have a type two grandfather. So you know, familiar with that side of it. But type one was pretty new to me.
Scott Benner 6:04
No autoimmune at all. Ra celiac.
Adrienne 6:07
My grandmother had on my dad's side, a gluten intolerance, which she says is going away. So
Scott Benner 6:15
how old is she?
Adrienne 6:17
She just turned 80.
Scott Benner 6:19
My friend, Mike, he's gone now. But his grandmother when we were growing up in the in the last 10 years of her life, she poundcake and smoke cigarettes. What away? She just did not eat food anymore. Get up in the morning, have a piece of pancake, smoke a cigarette? And then that's just what she did all day long. I just wonder if maybe she stopped eating gluten didn't realize that the gluten thing is going away. Right,
Adrienne 6:42
right. Well, she did avoid it for some time. And now she says she can have little bits and not be bothered by it. So good for her.
Scott Benner 6:50
Yeah, I stay alive long enough. Yeah. Well, okay, so that's interesting. But I have your notes here in front of me. So it's a little unfair. But do you have anything else going on besides the type on post
Adrienne 7:02
type one diagnosis actually also received a bipolar two diagnosis? This was last August, and I am still not 100% settled into that. A lot of things about it do make sense, with, you know, my my history, but I haven't fully embraced that, I guess quite yet. I'm still navigating treatment and trying to find something that alleviates symptoms. Yeah, we're still in the throes of that. So yeah,
Scott Benner 7:29
I asked because if you listen to the podcast, you've heard me say this now. You know, when I started saying to people, is there any other autoimmune in your family? Eventually, people like they rattle things off? Like you just did it? You're like, I didn't ask about type two. But you said, oh, you know, somebody has type two. A lot of people would go, Oh, and I have my uncle's bipolar. Like they were just thinking of things that were, you know, wrong with people. And then they in their family and they would blurt them out. And my god, like, that's one at a time somebody said, My uncle's bipolar. I was like, What the hell is going on? You know, like, and I always wonder if it's not an inflammation issue, like autoimmune inflammation, that kind of mix. It's I mean, I obviously barely got into high school. So I don't know. But it's, you know, anecdotally, a lot of people say bipolar to me. So Right. Yeah, that's interesting. Yeah. And was that your whole life? Like, did you like you said you there were signs what were the signs growing up? I'd like to introduce you to your partner in eating healthy, hungry route. The easiest way to eat healthy hunger route has the best fruits, vegetables, premium meats, kids snacks, soups and stews, baked goods, and so much more hungry route.com/juice box. You can save hours of planning, shopping and cooking by letting hungry route deliver food you'll love right to your door and hungry route is here to support your fueling goals. Do you need more vegetables less sodium hungry route can make that happen? If you're ready to dig in, use my link hungry route.com/juice box links in the show notes links at juicebox podcast.com. This episode is sponsored by Medtronic diabetes, Medtronic diabetes.com/juice box. And now we're going to hear from Medtronic champion Jalen. I
Speaker 1 9:15
was going straight into high school. So it was a summer heading into high school was that particularly difficult? Unimaginable. You know, I missed my entire summer. So I went I was going to a brand new school. I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist. So I was traveling over an hour to the nearest endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown. Did
Scott Benner 9:48
you try to explain to people or did you find it easier just to stay private?
Speaker 1 9:53
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating wreck. Where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just kept it to myself didn't really talk about it.
Scott Benner 10:07
Did you eventually find people in real life that you could confide in. I
Speaker 1 10:12
never really got the experience until after getting to college. And then once I graduated college, it's all I see, you know, you can easily search Medtronic champions, you see people that pop up and you're like, wow, look at all this content. And I think that's something that motivates me started embracing more, you know, how I'm able to type one diabetes, Medtronic
Scott Benner 10:32
diabetes.com/juice box to hear more stories from the Medtronic champion community, I
Adrienne 10:40
guess, early to mid teens, I started having issues with depression and anxiety. So I've been treated for that since I was in my teens. But with bipolar two, there are more stretches spent in depressive periods, then there are in hypomania. So the difference between type two are bipolar two and one, you don't quite reach the full heights of mania. So you're maybe irritable or anxious, restless type of thing, but you're not just totally off the rails experiencing things that bipolar one usually would. And again, it's more time spent in depressive episodes, but you know, you live your life, like everything is revolving around the problems that you're having. And I have found just some selfish things, I guess about myself in the way I've lived in the past and just kind of disregarded what might be going on with the people close to me, when I myself am dealing with something. Everything else kind of just shuts off, which is embarrassing to even talk about. But then I'm worried that this is just going to talk sound totally scattered, because this is pretty new to me. Like I said, I'm I'm still not even fully convinced that that's what's going on. Okay. There are things about the diagnosis that, like I said, makes sense just about my personality and the way that I have lived but haven't found a treatment yet, that is super helpful. So I'm not fully convinced that that's what's going on. But they said that something like bipolar two could be triggered by the type one diagnosis, you know, being a traumatic event could also have been pregnancy. I do really notice though, that when my blood sugar is on a roller coaster, my mental state follows. So I think that's pretty normal for people with, you know, high sugars to have your inability or you know, just to not be themselves. So it's hard for me to kind of differentiate what may actually be bipolar versus just, you know, the things that go along with type one. Yeah,
Scott Benner 12:33
I don't have bipolar and my personality ebbs and flows with my daughter's blood sugar. So that's, yeah, that's fair. Yeah. Long depressive episodes. What does that look like? Like day to day?
Adrienne 12:45
Well, so this is actually another interesting element, they diagnosed me as rapid cycling bipolar two, so I can I can swing from, you know, it seems like one minute to the next, but I'll have a lot of ups and downs within a day. I think that the actual guidelines for diagnosing bipolar two, rapid cycling would be like four, or five depressive episodes in a few months, which to me doesn't seem that rapid. No, not at all. Because I like I'm sitting over here thinking I'm swinging you know, one side of the pendulum to the other multiple times of days. So
Scott Benner 13:20
Adrian, what's that look like? Is it like, oh my god, the world's ending? Everything is Terrible. Let's go climb Mount Everest, I just want to die. You guys want to try it? Like Like, is it like, sorry? Oh, hell, no, I just jumped to the. But like, is it like that is it just like, like, up, down, up, down, up, down like big swings like that, it
Adrienne 13:41
is big swings, I can go from like, I'm trying to think of just an example here, I wake up in a completely awful mood, you know, usually it's a crying baby that jolts you out of bed. So there's there's that it's a way to start the day. But you know, I'll walk into you know, take them out of the crib and we can have a restart, be totally snuggly, and you know, just head downstairs and something can set me off. It can be you know, the dog tripping us up as we go down the stairs, or just something that, you know, didn't get put away from the night before. And it just totally sends me into this spiral of oh my gosh, I'm not gonna get anything done today. Like, look at all this stuff that's got to, you know, happen around me and I'm working full time from home while also caring for the toddler and you know, most of the household stuff kind of defaults to me, I know you've had that experience in your life. But it's just a constant feeling, I guess, of being buried under the things that you see need to be done. When something good happens in your life that you know it can can really increase or better your mood, but then the slightest thing can really tip you off. And I feel terrible for my family because I know that I can be difficult to live with. I feel like my partner walks on eggshells. Oftentimes when he comes home because he doesn't know what version of me he's gonna get. But I keep telling myself that this is just a crazy period of time. I have lots of new things going on with the baby and the new diagnosis. You know, type one, I'm still navigating that there were no pre pregnancy settings to default back to and my insulin needs are constantly changing still. And
Scott Benner 15:14
can I ask a question here, if you had your thyroid checked, so,
Adrienne 15:17
because of you, I had actually requested some more in depth thyroid panels pretty shortly after I got diagnosed. type one, and they ran another panel just last week, actually. So I just got those results back and everything looks pretty normal. My TSH is like right on the border of low like the the low end of the scale, and I know this different app can be one second, by
Scott Benner 15:45
the way, you should see my notes in front of me 29 Bipolar question mark diagnosed during pregnancy thyroid question mark bleep
Adrienne 15:56
oh, gosh, okay, I
Scott Benner 15:58
had to make the note, Adrian because I got really panicked that Rob would take out the whole sentence and I really just wanted the word out not the whole sentence.
Adrienne 16:04
It's so funny. No,
Scott Benner 16:07
it's chalupa real. That's one of my other notes. I don't know why you people listen to
Adrienne 16:14
I do. I can't remember it yesterday. I was listening to it was an older episode and cut. I was in tears. Scott. You had me cracking up? I'm
Scott Benner 16:21
gonna have to go hilarious. Yeah, no, you really are. No.
Adrienne 16:25
I gotta say, too. I found the podcast. My first night in the hospital. I spent three nights in the hospital after I was diagnosed. And I pretty much went without any good information straight from the doctors because I was getting so much conflicting information. I went to Reddit, which I know you have mixed feelings on.
Scott Benner 16:44
No, no, no. Let's be clear, because that's not good. I love Reddit. I just don't go there. That's all the people on Reddit are very nice to me. I love you all. Don't let this lady speak for me. I don't say anything bad about you. Do not get me in trouble on Reddit. Adrian, what are you doing?
Adrienne 16:57
Oh, sorry. No, no, I thought maybe I had heard once that just weren't maybe weren't sure what the platform was.
Scott Benner 17:05
I don't want to say there was one time No, no, we won't talk about that. Anyway, the people on Reddit are really kind and they always are telling people about the podcast. I'm being genuine and sincere. Yeah, they are
Adrienne 17:15
absolutely wonderful. So that I was actually referred twice to the podcast in my first post, and I had cross posted my initial inquiry into a few different subreddits. But Heidi's pottery and you'll one one night, and they both said you have to listen to the Pro Tip series. And so the first episode I heard was newly diagnosed or starting over.
Scott Benner 17:35
So that makes you upset. It
Adrienne 17:37
is it's no not in a bad way. At
Scott Benner 17:40
all, let me know. Just kidding. Actually, Adrian, it would be great for the podcast, if you had a big mood swing while we were recording, but I don't.
Adrienne 17:50
You're in for a treat.
Scott Benner 17:52
So people reached out and they found you. That's amazing.
Adrienne 17:55
Yeah, they responded to my post. And you know, everybody just had the best words of encouragement and it was a lot of No Hey, sorry, you're invited to this crappy club arrived. But it is a great community and they could not sing your praises highly enough on there just was so so grateful that they pointed me your direction. Because honestly, like I said, with the the mixed info I was getting at diagnosis, your podcast was such a pillar of consistency and solid info that I could tell was really impacting people just from the Facebook group. I was in that really quickly as well. The community there is just unmatched. So so grateful. You're
Scott Benner 18:35
doing Who am I thinking? Yo, MTV Raps and Heidi song, what am I doing? Heidi's pottery? Oh, okay, thank you Heidi's pottery,
Adrienne 18:43
and Yo, 119119
Scott Benner 18:47
I really, I genuinely appreciate all kind you guys are and that you were sharing with me? Look what you did for a drink. It's really amazing. I would have never found you that way. You know? Yeah,
Adrienne 18:56
it's a it's a big world out there for sure. But just super grateful that they happen to see that post and, and come up listening to you. Yeah.
Scott Benner 19:06
Obviously, you're making the post because you need help. And I'm gonna I guess let's dig backwards a little bit. You came out of the hospital with what was your understanding of diabetes leaving the hospital or even in there?
Adrienne 19:16
They mostly were just trying to stabilize my sugar's I wasn't like, off the rails 91 See at diagnosis was only 8.9. And so they thought that it must have been the pregnancy that kicked it off. My agency wasn't high enough for it to have been something before that. And so they sent me straight to like labor and delivery. And so that's where I was being treated. They seem to have I mean, and I would never be able to tell the difference obviously at that point, you know, whether they knew much about type one or not. They seemed to they got my sugar's down, I you know, was vaguely briefed on how I would be handling things with both short and long acting insulin when I left. I never gave myself an injection at the hospital. They did it each time. And then the only education I really got was my OB coming in to check on me and my actual doctor in the middle of the night he came in at like two in the morning, I had just fallen asleep not that long before. He was talking about my lifespan and all the complications that were gonna happen while you're walking out of a dead sleep to tell me these things. And so that was the impression I had of type one when I left. The hospital was like this doom and gloom thing he did say, you know, there's some technology now that helps with management. But basically, this is where you're headed. That was really awful. And then I was referred to an endo, who works within the hospital system there. And she, Okay, I gotta, I gotta rewind a little bit. So when I found your podcast, you know, I started hearing all this about Dexcom and Omnipod. Those were the two, the two things that stuck in my brain. And so then I left there, really urging my teams to help me get this technology. And I was set up with a virtual visit with a diabetes educator. A couple of days after I was released from the hospital. When we logged on, she said, Oh, you know, I was really hoping you'd be here in person, because I wanted to set you up with a Dexcom. And I just about came out of my skin. I was like, I will be there in 15 minutes. You know, please let me come in, don't get
Scott Benner 21:18
the guy on the phone said that word. Right. You're like, I heard the guy on the podcast, say that word. Yes.
Adrienne 21:24
Yeah, I need that. Yeah, I will be there. And she's like, okay, yeah, I'll wait for you. And I could not believe that I figured she was going to reschedule me and you know, make me wait for this. But so we got that set up. That was great. And then, after seeing her, I finally got connected with the endocrinologist. And I asked her pretty much immediately about getting on a pump. And she said, It's too much for you to learn right now. I don't think you can do it. And I was like, at listen, I will tell you what I can or can't learn, you know, my main concern now is not killing this baby. Like, they don't even want you to get pregnant as a type one, unless you're a onesies below a certain level. And I went into pregnancy, not even knowing that I had this. And so I'm panicking thinking that I'm going to harm my baby. I just want all of the tools that are available to me. And so I really pushed on Omnipod. And she was not going to do it. And so I went back to my diabetes educator. And, you know, she had kind of given me the impression that she thought I could I could handle this information, you know, that I was catching on kind of quickly. And I credit the podcast with that, by the way. She Yeah. She said, Okay, well, I'll see what I can do. I'll put some notes in and, you know, we'll, we'll talk to the Endo. And that never happens. She didn't put notes in my file, but I had reached out to insolate you with their insurance coverage check. And they reached out directly to my Endo. And before I knew it, I had a prescription on file at Rite Aid for the entrepot. Five. And where did this even come from? Because my endo never approved it. I never talked to her about it again, all I did was ask about my insurance coverage. So I don't know what happened there. But yeah, I ended up on the Omnipod. Five within a month of diagnosis. I think I think insolate for that because I you know, I couldn't get anywhere with my doctor. Yeah.
Scott Benner 23:11
I mean, it's not uncommon, like, you know what, you bumped into there. And that person didn't know you? They didn't How much time do they have with you when they said I don't think you can handle this.
Adrienne 23:22
I was in her office for probably 20 minutes. But the only reason for that was because she just kept talking over me and talking over me talking over me and I, I left they're so frustrated and discouraged. You know, this person is she's not hearing my questions or my concerns. Like, I know, there's there's also the element of you don't even know what to ask, because you don't know what information you don't have. But it seems like she just was looking down on me, I guess because I didn't know what I was talking about. And like she just had
Scott Benner 23:54
diabetes at that point. Eight seconds. Right? Yeah. A little over a week. Right? Of course, you know, and she's not asking you questions. She's, she's just pontificating. Pretty
Adrienne 24:06
much. And I got the the typical, you know, 15 carbs to treat a low was on a sliding scale before insulin, and they had started me on mph, which eventually got changed, thankfully, because I didn't have a great experience with that. I feel like I'm just talking circles now.
Scott Benner 24:23
No age. Are you doing great. Are you really worried that you're not doing well? Well, I
Adrienne 24:28
was mostly worried that the story wouldn't even make sense. I feel like there's so many elements I've just been jumping around. Not at all. Don't
Scott Benner 24:34
worry about I'm following you perfectly. Well, don't worry about that. Yeah. Okay, so they get your pump. Did you get a CGM at the same time or no,
Adrienne 24:44
no. So I was on a roll. I had the Dexcom about six days after diagnosis and then the Omnipod five a month after and after I got the prescription for the Omni pod. They actually had an alert come out for a shortage of Omnipod vibes and so I was supposed to be going in for my pump training in a couple of days. And so I was waiting on. It's like a provider who delivers your prescriptions, I guess it's alto pharmacy and they were supposed to be delivering Omni pods. Then I got an alert that they were in short supply. So I spent a long time on the phone with the pharmacy and this poor girl. She was just so wonderful. I told her like, I'm about to leave town. I'm supposed to get my pump training right before I go, you know, is there any way I can I drive and pick these up somewhere. And she's like, well, it looks like there's a pharmacy. This place was three hours from my house. I'm just gonna do it. I drove and I picked them up. That was my first box. Wow, that's, yeah, got the training.
Scott Benner 25:41
My parents picked me up to adopt me in during a tropical storm. They said it was like a hurricane. And I always felt like that meant some thing like that. They probably really wanted me. But now I look back as an adult. And I'm like, it's probably the only baby they got offered your life one way. What is this pumpkin to do? It better be special. I
Adrienne 26:05
was so so glad to be able to even pick it up. I don't care about the drive. But ya know, that was that was great. And I've actually since switched from Omnipod five on the dash now and I'm looping with Android APs.
Scott Benner 26:19
Oh, look at you. Did you move into Dexcom? G seven. Are you still with G six?
Adrienne 26:22
I'm still with G six. But yeah, I just started looping. Right before Christmas. Christmas Eve actually was my first day on the dash. So that's Did you say you do it so far. I EPS Android EPS. Yeah. Who
Scott Benner 26:35
did you set up yourself?
Adrienne 26:37
So I set up the Nightscout through T one pow. And then I built built a PS on my own? Yeah. Good for you. Yeah. Awesome. Awesome. Instructions. Yeah,
Scott Benner 26:47
no kidding. I am. I let somebody helped me, but still. Thank you, Mike. I wish I did. Yeah, no, no, I there's a part of me that knows for sure. I wouldn't do it. Right. But it's working astonishingly well for Arden. Really great. Really? Yes. So and she's using it with G seven, which is nice, too.
Adrienne 27:06
How is she liking g7
Scott Benner 27:08
It's smaller and easier to swap. I think that's what she knows about it. So it's what she gets. Arden really doesn't dig nuts and bolts into diabetes. Like she knows how to do it. She knows how to handle like I've not seen she's been in college now for a year and a half. I haven't seen one circumstance come up that she hasn't handled well. Like really, really good and outstanding. Yeah. But she's she's not wanting to talk about it a lot. She doesn't want to sit around and talk about IVs. Even if I come up to her, I'm like, Hey, we have to do this. Because of this. She goes, Okay. I'm like, do you understand? She goes yeah, and I'm like, okay, but it's not dismissive. It's just she's not looking to conversate around. That's fair. Yeah. Yeah, there's nothing about me. I don't talk about it either. Which is probably weird for people to hear. But I don't. I don't find myself talking about diabetes very frequently.
Adrienne 27:55
I imagine you spent so much time doing it on the podcast probably doesn't leak into your personal life.
Scott Benner 28:00
I'm tucked out on it. I'm good. I've had enough. I've had enough conversations. I want to, I want to, I want to make sure this timeline is right. So how far along are you when you're diagnosed? Tell me again, late 19 weeks, 18 weeks now I'm gonna do some quick math. That's like five months. And you're probably impressed off. So did that. But don't think it's great. Yeah, thank you. It's actually four months in three weeks. But so five months, you still have month 678. You still got four to go. And you're on a pump pretty quickly, six weeks. So you do a pump at a CGM for the last three months of your pregnancy? And where did you get your a one C two during the pregnancy? So
Adrienne 28:45
I started at 8.9 that diagnosis and by the time I gave birth, I was 5.4. Which I don't know if that's actually good or not, because it seems like a huge drop in that amount of time, which I know is not good for you. But my sugars were so much more in control. I was proud of myself, my team was impressed with what they were seeing with the graphs, and I just could not have done that with a podcast. I
Scott Benner 29:14
well. Oh, well. I'll let you say something nice about me in a second. But I was gonna say that as much as I don't know the actual ramifications of you bringing it down that quickly. I think for the baby. It's the step I would have thought I would have said, Hey, let's get it down. You know, because we're growing a baby here.
Unknown Speaker 29:29
Right?
Scott Benner 29:30
Did you change your diet? Was there any more Taco Bell after that? No,
Adrienne 29:35
no more Taco Bell, although so this is kind of another interesting element too. I feel like the type one diagnosis really messed with my relationship with food, which I'm sure you hear all the time, but not in the way that I would expect. So I did control myself better during the pregnancy for baby's sake, but holy cow after he arrived. Self control abilities really just plummeted. So, I found that the the foods that I was figuring out the Bolus for the best were the worst foods for me, you know, things that I would just try and fail, try and fail until I finally figured them out. Like I have to know how to Bolus for a decent amount of fries. So you know, things that I just, I don't want to give up. Like, I'm more inclined to eat the things that I know I shouldn't have now that I know that I shouldn't have them, you know, almost like I don't, I don't want to be told you know that I can't do something food was a really big, I don't know, I'm a foodie, I love I love the experience of eating and I'm French fries as a terrible example to demonstrate that but I would miss that you know, and so it's really important to me to know that I can maintain, you know, a normal sense of
Scott Benner 30:45
well listen, anybody who's ever bitten into a properly cooked french fry with crispy and salty on the outside and squishy and potato in the middle is not gonna that's a good example. I think so i
Adrienne 30:57
think so probably not as good as a chalupa, but we'll go with it. Yeah.
Scott Benner 30:59
Did you know by the way, in 1997, Taco Bell ran a commercial with Chihuahua named Gidget. And, and I think
Adrienne 31:06
you know, Taco Bell.
Scott Benner 31:07
Yeah. So say that again. You know, Taco Bell. The reason I bring it up is because when I remembered I remembered a secret or Taco Bell. And I don't know any Spanish at all. I just wonder how it stuck in my in my head. Like, how did I get quitter? Oh, right, but not the yo. So anyway, I'm upset with myself over that one. Do you think now 97 You know that one? 2007 2000. So that's 30 years ago.
Adrienne 31:33
Did it run longer than 97? I wonder because I definitely remember the Chihuahua.
Scott Benner 31:37
It's huge on YouTube. Like legitimately, like, almost like this is the commercial. It's a little chihuahua. He's like running through the street. And then he sees another shoe ally falls in love. And then what happens tolerance passes by.
Okay, so here's the premise. That Chihuahua is running down the street. There's another Chihuahua, a lady Chihuahua, who's looking at him with love. But he rolls right buyer to a guy eaten a taco and then says what he says. My kind of dog bites what I'm seeing from you, is you would probably give up love for a taco.
Adrienne 32:27
I might, I might
Scott Benner 32:30
see you ended up getting very good at bolusing for things that you're like healthwise, I shouldn't be doing this. But hey, look how good I am at boys and for it.
Adrienne 32:37
Well, I think I've gotten better at bolusing for those things. I don't know if I've gotten good at it. But I did figure out there's a sandwich from Panera that I have nailed. You know, things like that staples that I crave often. Like, I gotta figure that out. Because I don't know if I'll make it without having that in my life. So here we are.
Scott Benner 32:57
What's the Bolus for the sandwich? What do you do? So I
Adrienne 33:01
actually have to drag that out. And so I'll tell you, I haven't eaten that Panera sandwich. Since I started looping. I'm having trouble with the extended carbs and getting those to work right, with APS but still working it out. But when I was on Omnipod, five, it was an extended Bolus for like two and a half hours. And I would do about 60% upfront and the other 40% dragged out. My carb ratio is one to 12 Currently, I don't know what it was at the time, but
Scott Benner 33:28
you're in manual at that point with Omnipod. Five. I
Adrienne 33:32
never stayed in automated mode after Okay, so Oh, because you couldn't while you're pregnant. Right? Right. Yeah, just wasn't tight enough. Right
Scott Benner 33:40
control. So I was gonna say cuz you said extendable. So I was like, that's gonna confuse people. You cannot do an extended Bolus and automation with sorry, don't be sorry. Be apologizing. And I'm, I'm cleaning it up. Don't worry. You're good at that. Yeah. So you're like doing a heavy extended Bolus on this sandwich. You've got it all figured out. It's working well for you. Do you Pre-Bolus it?
Adrienne 34:00
Oh, yeah. Yeah. And that I think postpartum has been a huge hang up for me the Pre-Bolus. Because if, if I do Pre-Bolus Oftentimes, I'll get distracted by something else and then totally forget to eat and then I'm tanking. Or sometimes it's like, oh, shoot, you know, I forgot to Pre-Bolus and now I know I'm going to skyrocket. So it's, you know, adding that extra extra amount onto the front end of the Bolus and hoping to even it out later.
Scott Benner 34:28
Are you finding it difficult to be a mom? I
Adrienne 34:32
am i i love it. I would not trade it for the world. That little boy is just my pride and joy. But yeah, it's been hard. the postpartum period was really rough. And I feel like with the type one diagnosis, you know, this sounds selfish, but I feel like I got robbed of a very happy time in my life. Of course, the pregnancy was perfect. I didn't really have morning sickness. I think I got I got sick twice over the whole pregnancy. You know, most of the The downsides that you hear about carrying a child just didn't apply to me and it should have been a really joyous time in my life if not for this. And same thing with the first year of his life. You know, I, like I said, I had no pre pregnancy settings to go back to for my pump had no idea what my needs would be. I have no idea. If I was honeymooning. I'm sure I probably was. But my requirements change.
Scott Benner 35:24
Yeah, you might have caught a little bit of a break while you're pregnant in the honeymoon, but still a heavy usage because of the hormones I imagined. And then you have the baby and you don't need as much but you don't have any frame of reference for how to go back. Right?
Adrienne 35:35
Exactly. Yes. It's like starting from scratch. Yeah. Twice, eight, six months.
Scott Benner 35:39
Yeah, yeah. While you're supposed to be celebrating this, this, this thing that may be coming in instead, you're Listen, I'm not a lady. But I've been married to one for a long time. I would imagine that getting really bad news during a time when you're so flooded with hormones is probably extra difficult. It
Adrienne 35:58
was bad. It was bad. I ended up back on antidepressants after having like a total meltdown in my OBS office. Like alright, but I feel like he kind of wanted to just wash his hands. And he's like, Well, we'll get you taken care of and we'll see how this goes after you give birth but we're
Scott Benner 36:14
gonna get this one. Hi. So she stopped yelling. Right?
Adrienne 36:19
It was like yelling. Crying,
Scott Benner 36:21
I would imagine. Yeah, like devastated. No, yeah, absolutely.
Adrienne 36:25
Yeah. Cuz you're, you're afraid for your kid and you're afraid because this, you know, same guy who is now like, Okay, well, we'll start John, something he was the one that came into my hospital room in the middle of the night was telling me how my life was gonna be shorter. And I was gonna have all these these problems down the road.
Scott Benner 36:41
How much shorter? Did he tell you? This is ridiculous.
Adrienne 36:45
I don't think he gave me an amount. He just basically told me that type ones are known to have shorter lifespans, especially women. He said, I don't know why that is because I feel like when I googled that after, I didn't see anything
Scott Benner 36:58
like that, but probably knew one lady that died. Yeah, yes. You
Adrienne 37:02
know, aside from that experience, he was the most amazing doctor, I really loved him. So that was that was really bizarre to me.
Scott Benner 37:09
But there's one day when when he ignored the fact that I was pregnant for the first time having a baby super excited, all of a sudden found out I have an incurable disease, and then started thinking about my own health, and the baby's health. And the fact that I didn't know what I was doing. And all the joy was stripped out in my moment. And then he's like, Hey, by the way, you're probably gonna die sooner now. Right? Yeah. I don't know why that didn't go. Well, Adrian, this It's baffling.
Adrienne 37:36
Ya know, oh, my gosh.
Scott Benner 37:40
Is Wrong with everybody? Let's say you were gonna die sooner. Let's just say that that's true for a second. We can't hold on to that information for a little bit. That has to come out today.
Adrienne 37:53
My friend, yeah. Figure it out.
Scott Benner 37:55
That guy is not married. Or if he was that lady left him.
Adrienne 37:59
His appears happily married with a couple of kids. Yeah,
Scott Benner 38:04
I don't know why what she's putting up with at home or What? What? Maybe he's got common sense at home that he doesn't have when he's sitting with you. Also, you look young. I know. You're not young. I know. You're 29. But I know what you look like. You look young, like even that you would think would would like I don't know, like garner a little bit of like, fatherly care from the guy or something like that. Like, you know, you're gonna die sooner. To weird place to start, you know?
Adrienne 38:29
No, yeah, really, as it is. Wow.
Scott Benner 38:32
Yeah. What are you gonna do? Exactly. So, so I'm sorry. So baby comes flying out. That all goes great. But then Besides, your insulin needs changing, you get hit with postpartum how quickly? Does that happen after the birth? And how long does it stick with you for and what was it like?
Adrienne 38:49
Well, I would say within a couple of weeks, I noticed a big change in myself. And my partner took I think he took about a week and a half after the baby came my boss so it's, you know, funny enough, he is actually type one himself and he was in the car with me the day that I got called in to come to the hospital after I had monitored my sugar's you know, that weekend after the initial doctor's appointment? Yeah. So he heard me reading off my numbers to the nurse, and he had no idea what had been going on. And when I hung up the phone, he said, that sounds like blood sugar. And that doesn't sound very good. And I was like, geez, no, thanks. He has been a great resource for me. But all that to say this company that I work for is about eight men. And there's no precedent for what happens when a female employee needs to take maternity leave. And so when he found out I was pregnant, he's like, Well, what do you think? And I said, Well, I think standard in the US is 12 weeks. And he said, Oh, I was you know, thinking more like three weeks. Oh,
Scott Benner 39:49
you bring the baby to the office right after you have it and keep working place.
Adrienne 39:54
Well, thankfully, I work from home. And so they they were flexible. They met me at eight weeks, but Even still, I mean, anybody who's had a baby would say, that's just not enough time, especially when you're navigating all this new stuff. And I would say within a couple of weeks in, to circle back to your question, I started noticing, like I said, a change in myself, it was a really lonely period. You know, when your partner's gone during the day, you're now responsible for caring for this small human, you have no clue what you're doing. You know, you're navigating this new disease at I breastfed and nursing dropped my sugar a lot. And so I was having scary lows. I remember my partner coming home from work, and I was just completely out of sorts. I don't remember where the baby was somewhere safe. He was either in his crib, or maybe sleeping in his swing or something like that. But my partner found me just kind of wandering around trying to put on this baby carrier sling thing that I had, and I was not making any sense, you know, he was totally sweaty and shaky, and just not, you know, I didn't want to eat anything. But this poor guy he has put up with a lot, you know, that fell in love with me. I mean, he didn't know what he was signing up for, you know, he has a son from a previous marriage who just turned 16. And he had not been planning on having any more kids. And so our son Lucas was a
Scott Benner 41:20
blessing to us. Yeah, fries blessing, but it happened after a wedding. No. Do you guys go out to a movie try to have dinner? Thought it would be safe. What happened? No,
Adrienne 41:29
no, just, uh, we're, we're still not married yet. That's that's down the road. But I actually found out that I was pregnant on a business trip. That was the shock. So
Scott Benner 41:38
hey, guys, I'm gonna need 12 weeks off and about a year. Right? Yeah, surprise.
Adrienne 41:44
No, but right after we found out we were pregnant, pretty much. You know, within a couple of months, I got this diagnosis. And now he's not responsible for me. But he's encumbered with all of my alarms. And you know, whatever nonsense I'm dealing with on a bad sugar day. You have concerned about that? Well, I mean, the alarms kept me up all night, every night, up until birth, pretty much. And now you know, baby's awake in the night, my alarms are still going off. Like he he gets the backlash from when I'm frustrated by sugars. You know, every time I'm high or super low, I feel like I'm failing, which is extra scary to me, because I'm worried that my son is going to get it. That's really heavy on my brains. I've been paranoid about that since since I was diagnosed. Even just last night, actually, my son had been drinking a lot of water. And he ended up throwing up in the middle of the night, which he hasn't done. You know, they split up when they're young, young. But yeah, in terms of actually getting sick, I had never seen that from him. And I just about lost my mind last night. We were checking his sugar, he was beautiful 72. But I find myself checking often, and I'm afraid of every sickness that comes into our house, because I don't want that to be what kicks it off for him. Just hyper, hyper aware. I'm
Scott Benner 43:05
about 23 years ahead of you, on my race to the grave with you, pretty far ahead of you. The best thing I could say, and the thing that I found very comforting and helpful throughout my life and raising kids and your childhood as type one. And, you know, my son has hypothyroidism. So does my daughter, you know, like, I've got health issues around me. I would just tell you that worry is a waste of imagination, that you absolutely have no idea what will or won't happen in the future. And you're using up your your capital now on worrying about something that might never happen and probably won't ever happen. But if it is to happen, I want you all charged up and ready to go when we're actually when there's actually a fight to fight. You know what I mean? Yeah, I know, that's not as easy said. And as easy said is done. But wait, I got that. I just get that back. Who cares? You know what I mean? I know it's, you know what I mean? It's a saying you all know what it means. It's you know, but it's absolutely true. And you will figure it out one day, so don't dilly dally get into it. Because you can't spend any time pre planning and worrying are not the same things. That is like you can you know what to do, right? If this happens, I'll test his blood sugar. Other than that, you'd never think of it again. People get sick. There's nothing you can do about it. That is very true. Yeah, you are not in control.
Adrienne 44:28
I believe that. I've seen that the last couple of years.
Scott Benner 44:32
And neither am I. I hate to pile on with the make you feel bad questions, but you're not married. And you got the baby. And a year ago, you weren't bipolar and had type one diabetes. And do you worry about that? Do you ever like look at the door at 505 and go hey, ain't coming back. Or like, you know, like,
Adrienne 44:53
worried that he's voice totally. Yeah. Well, I mean, yeah, that the thoughts have been They're for sure I feel, like I said, I felt like I became a burden when this happened, and especially, you know, with the, I never want my son to listen to this, and feel like oh, man, you know, my parents weren't expecting me or, you know, they're not happy. I'm here. But Adrian,
Scott Benner 45:14
if this podcast still around, when Lucas is old enough to listen to podcast, I am going to be such a successful podcaster that he'll just be thrilled that he was mentioned on my amazing show that's been running for 30 years. Don't worry about a plan for
Adrienne 45:28
that plan for it. Okay. I believe it. The thought has been there. Absolutely. A lot of this is now what he's signed up for.
Scott Benner 45:34
Yeah. I mean, I don't see how somebody wouldn't think that like not that you're like, actually thinking this guy is going to bail me. But I mean, like, like, what's
Adrienne 45:40
the appeal to staying for him? Well,
Scott Benner 45:42
I'm assuming you love you. That's not my point. My point is like, from your perspective, why would you not wonder about that? Like, that's not worrying? That to me seems like, Ah, okay. Well, I could see how this could end up happening. Now, once I've thought it through. I would voice it to him. And then I would like, I wouldn't worry about it again. Yeah. Because I think the worst thing you can do is in your heart, hold out even 10% of an idea that like there's going to be another shoot, it's going to drop, and then because it always I think it stops you from being completely present in your relationship. If you're worried the person is always going to leave you. That's absolutely, yeah, you're right. 23 years ahead of you. Well, I
Adrienne 46:24
won't have long to catch up to you.
Scott Benner 46:26
Oh, no. Yeah, you and I should be dying right around the same time, according to him. So right on your tail, Scott. I'm very good now. So I'm gonna live forever.
Adrienne 46:35
Excellent. Yes. You're probably dropped
Scott Benner 46:38
dead next year. And people go oh, remember when he said he was 10? He was gonna live forever.
Adrienne 46:43
Too many chalupas?
Scott Benner 46:44
I've never I don't do the Taco Bell.
Adrienne 46:48
It's good for you. I don't get it shouldn't shouldn't. Yeah, I
Scott Benner 46:51
don't get the whole you have it out there. Right. Is one of the shoe from the house somewhere. I live in a fancy place. No, I mean, I could be at a Taco Bell in five minutes if I catch one light. But I drive past that every day. And I'm like, I don't understand what you people are doing it. They're so good for you. For you. I really don't.
Adrienne 47:09
It's sometimes you just need something greasy and awful. Yeah, I don't
Scott Benner 47:13
have that. I don't have that feeling. greasy. Makes me feel unpleasant in my belly.
Adrienne 47:18
Yeah,
Scott Benner 47:19
yeah. You're right about that. So anyway, all right. What are we going to do? Adrian, we got, we got all of our problems laid out in front of us, we're doing pretty well with the diabetes, you're learning the algorithm or to get rid of some of those lows. So you can you know, sleep through the night, stop those alarms from going off. But what about the rest of it? How are you managing? I mean, you said they put you on some sort of antidepressant, but did you stay on it?
Adrienne 47:40
Well, I'm on something different now. So I was on the antidepressant through the pregnancy, and then through breastfeeding, because that's, you know, what has been studied to be safe for nursing women. But since then, they have put me on a different medication that's sometimes used to treat bipolar two, but it's actually a seizure medication. So I'm at the therapeutic dose of that. And some days, I feel like it helps some days I don't. So I really don't know if that's the meds or if it's just a better day, if that makes sense. I'm still navigating. And my last appointment I had with the psychiatrist, I was actually really low blood sugar wise, and just was pretty worthless for actually making any headway during the appointment. So that kind of put things on pause. So I'll meet with her again, in another month or so. I see her about every month, in another month or so. Yeah, we don't we don't meet every month. Okay. It's actually kind of hard to get in with her. There's a shortage of mental health professionals.
Scott Benner 48:36
Firing the Yeah, I think COVID might have done that. Yeah, I believe everybody a reason to need one and enough time to figure out how to do it. So yeah, a problem. Wow. I can't believe that as frequently as you can get in. It's
Adrienne 48:52
pretty crazy. And it's worse. I guess now with OB GYN is out here. People are talking about not being able to get in to see anybody you know that they're calling until October or November, which is obviously not an option if you're pregnant now, you know, so I thought
Scott Benner 49:07
you get here in October. That's where do you live in the woods or something?
Adrienne 49:12
I live in western Washington. So I'm on the west side of the Puget Sound.
Scott Benner 49:20
Region, Canada in the ocean. I hear what you're saying. Pretty much you got no, you're stuck. You better learn how to be an OB on your own. Do you think you'd ever have another kid?
Adrienne 49:30
Right now? No, I think I think we're good.
Scott Benner 49:34
I'm fine. Yeah, everything's fine.
Adrienne 49:37
You've seen that picture. The dogs sitting in the Burning Room? This is fine. Everything's fine.
Scott Benner 49:45
No one worry. You know, it's funny when my son was in, like kindergarten, he had this principle. And I used to joke that she was a great politician because if you came to her and said the building is on fire and the kids can't get out, she'd be like, don't worry about it. We've seen this before. We'll take care of It like, you know, she's like on that level. She passed away last week and I thought I could stop that one. No, let's hear her spin this.
Adrienne 50:10
Oh my gosh, I'm
Scott Benner 50:11
just teasing. She's like a eulogy.
Adrienne 50:17
Would you speak at my funeral? Scott, when I'm sure
Scott Benner 50:19
I'll never forget the day, I met Adrian. Oh, Jesus, what a mess. Do you have a lot of hope? Like, are you hopeful about your direction? Do you feel like you're focused and have the help around you that you need to get where you want to go?
Adrienne 50:37
I have such a great support system. I feel really, really blessed. And I feel guilty even complaining about any of this stuff. Because man, I know that there are people out there who are navigating a lot worse, alone. And so I do feel like I have hope I have got a great family in my corner. Nice. I'm really happy with my care team. Now I have changed. endocrinologist and my my endo now is actually type one herself, which is amazing. That has changed a lot about the way we approach there. And just her her understanding of where I'm at. And her her willingness to help me. I was shocked that she actually loops. I can't remember if I even said that. She loops herself. And so it was funny. I was actually trying to be covert in my, my my chart message to her when I was asking about switching from the Omnipod five to the dash. Like I think I'd like to lean towards some you know, tighter control and you know, more in depth settings or something. And I put like a winky face because I didn't know if I was supposed to talk about looping since it's not FDA approved. I didn't want that in her system. She wrote back she's like, do you mean that you want to loop? And I'm like, Well, now I feel like a weirdo for
Scott Benner 51:45
talking about it. Now. I
Adrienne 51:48
don't know what that is. Yeah, no, but that's, that's been wonderful. She's amazing. And yeah, just like I said, my family has been great through all of this, my mom especially, she lives a couple hours for me, but she has done everything she can to learn about type one and what's going on, I do feel like she has probably the best understanding of anybody in my family, she really dove in with me. And, you know, it's such an onslaught of new information that makes no sense in the beginning. And, you know, I probably buried her with all of my venting and complaints. But she's, she's been great. She gets it in. really grateful to have her in my corner, too. Yeah.
Scott Benner 52:27
I'm sure if you keep going the way you're going, you're gonna you're gonna find your way to the other side of it. You know, I mean, my wife had postpartum after she had call. Like, she was like, completely disconnected from him for a little while. Yeah, in the beginning, like he looked like, like furniture. Her I think, you know, like she knew, you know, the baby, and I love the baby and all that stuff. But she just she felt disconnected for a while. Until I heard
Adrienne 52:52
that. Yeah. That alone gives you feelings of guilt. Because you know, you're you're supposed to feel one way about this baby that's here now. And you know, to not have that right off the bat is really hard. Sure. Did she come out of it fairly quickly. Yeah.
Scott Benner 53:05
I mean, it wasn't. It wasn't too too long. And but she also had, you know, I don't know, like, I wonder too. We never were checking her thyroid back then. And I don't know that we even knew what to look for back then. You know, but she then after having Arden lived with, like, untreated hypothyroidism for years, but I don't know if it was, you know, what the situation was prior to that we look back sometimes to a couple of things that happened before. And some of her symptomatic stuff matched my son's before we figured out about his hypothyroidism, which is probably Hashimotos Oh, wow. And you wonder, like, how long was something like that impact? They may? And you know, like, how much effect does that have? If your TSH is two by the way? Did you ever figure out what it was in the paperwork?
Adrienne 53:50
I totally spaced on that until you started talking about this again, I just pulled it up. It's point 665.
Scott Benner 53:54
Your TSH is great. Yeah. So the normal
Adrienne 53:58
range point five, five to 4.78. So it's like right on the low end. And I don't know if I should push for that.
Scott Benner 54:06
I mean, if you don't have a problem with your thyroid that low TSH shouldn't be
Adrienne 54:10
an issue. Well, they said it was visibly enlarged my thyroid Oh,
Scott Benner 54:14
do you maybe have hyperthyroidism? That's
Adrienne 54:17
what I'm thinking this so they had some nodules that they weren't concerned about when they did the last ultrasound or thyroid ultrasound, I guess is what they do. But they didn't feel the need to explore that further. TSH is on the lower side, but the three T four looks great. Oh,
Scott Benner 54:33
yeah, I mean, I would want somebody paying closer attention to it because of just some of the symptoms that come with thyroid problems. I'm gonna yank up hyperthyroid symptoms.
Adrienne 54:45
I'm insanely sensitive to heat, like night sweats, out of control, which really piqued or I guess raised a red flag for me because that's something pretty new. I'd say within the last couple of months that is just really become a problem. So that's why I had asked again for that thyroid panel. This last week when they were doing my UNC and we'll see what she says I have an appointment with her in a couple days. So let's do
Scott Benner 55:09
a hands up yay or nay ready? nervous, anxious or irritable. Yay. All three hyper activity you may find it hard to stay still and have a lot of nervous energy. Occasionally mood swings. Yeah. difficulty sleeping. Yeah. Feeling tired all the time. Absolutely. Sensitivity to heat. Yes. Muscle weakness.
Adrienne 55:34
Not so much. You
Scott Benner 55:35
gotta pay too much. Not really know there's the a lot. Yes, he?
Unknown Speaker 55:41
Yes.
Scott Benner 55:42
Do you make the thin poopy diarrhea?
Adrienne 55:44
Not super often. No.
Scott Benner 55:47
Have you had a loss of well is gonna say a loss of interest in sex. You found out you were pregnant. on a business trip to a guy you're not married to I bet you that got rid of your interest. And we
Adrienne 55:56
had we'd been together for a decent amount of time prior to that. It's not like a one night stand. You
Scott Benner 56:01
probably have a back now on your side of the bed. Keep that thing over there. But do you have a loss of interest in sex? I do not. enlarged thyroid gland. Yes. excessive sweating. Yes. Loose nails.
No, any hives? No. Loss of hair. Yes.
You lost weight.
Adrienne 56:21
I fluctuate. I fluctuate.
Scott Benner 56:24
I mean, I go find a rock solid. Endo to take care of this for me.
Adrienne 56:29
I absolutely trust my current Endo. I just wonder if when she sees the actual lab results? She would think yeah, there's no reason to pursue this. I'm hoping not. I said with Kelly they you just pushed it right until they actually tried the meds for
Scott Benner 56:43
her. Here's what I might say. At the moment. I have a lot of symptoms that people are telling me are bipolar two that also match thyroid issues. Let's not be treated me for something I don't have. So this thing is a lot more controllable than the other thing. Why don't we find out if this is what this is first? Because I mean, can you imagine if you I mean I don't know. Again? Hand to god, I almost didn't make it through high school. But can you imagine? Can you imagine if you're being treated for bipolar two and what you have is a thyroid dysregulation
Adrienne 57:17
that would be absolutely wild and a huge relief, I think. Right?
Scott Benner 57:22
And so like especially because it all came on at once. Right? Right. You know after the baby and a lot of times ladies thyroids go pop snack or crack snack up. What am I trying to say? Crack? What am I trying to say? Pop? Snap, Crack. Crack Snapple pop? Is that it? Holy shit. I might have Bipolar to a lot of times thyroid issues. Yeah, go pop after pregnancies. Right? Yeah, true. I mean, what are the odds that you got bipolar two, and your thyroid exploded? At the same time as you got type one diabetes?
Adrienne 58:03
That's what I'm thinking just a hot mess over here. Wow. I really would love for it to be thyroid.
Scott Benner 58:08
I would love to be right about this. And I mean, a for you and your happiness. Sure. But I mean, B for me, because I would look like a master diagnostician. I wouldn't be a BA. I'd be like Dr. House. Except with a Paul. Absolutely. Yes. Yes. He's British. You know, the actor.
Adrienne 58:27
You have a good accent? No, I
Scott Benner 58:28
can't do it. But he he did an American accent on the TV show. So it doesn't matter. I'm good. Yeah. Yeah.
Adrienne 58:33
I'm impressed with their ability to do that. Sometimes.
Scott Benner 58:36
I hear what you're saying. Sometimes they're okay at it. Wow. I can't remember the rice krispies commercial, but I know the Taco Bell one.
Adrienne 58:46
That's interesting. It's a sign I think you're supposed to eat there.
Scott Benner 58:49
I think I'm supposed to start drinking caffeine. Yeah, my brain firing a little faster. Snap, Crackle pop. Right. Snap crack. That's exactly right. Who can we call the episode Snap, Crackle pop.
Adrienne 59:01
Please do.
Scott Benner 59:02
I don't see why we couldn't because we can't call it so. By the way, a thing you did not say you wanted to do just the thing I said out loud. All right. Let's get that out. Yeah, let's be clear, in case your kid doesn't have listened to this one day. Your mom's a face to face lover. Don't worry about it. That's an appropriate Adrienne.
Unknown Speaker 59:22
You're fine.
Scott Benner 59:25
Oh, no, I figured you were cool a while ago. Don't worry about it. Well, Jesus Christ, what a mess. Alright, I want this fix. And I want it I want a report back in six months. Is that fair? That's
Adrienne 59:38
fair. Yeah, I will let you know about the thyroid. Seriously.
Scott Benner 59:41
I would love to know Like honestly, whether it's the cause of all your issues or not. It needs to be well regulated, so that you can at least eliminate those possibilities because even people with well regulated thyroids seem see ups and downs with the symptoms throughout their life. Sure, you know, it's not a it's not a perfect system? For sure. Yeah, I don't know. I want to know more about this seriously, will you keep in touch for me? Yeah, I would love that. Alright, is there anything we haven't talked about that we should have?
Adrienne 1:00:11
One thing that I did mean to include that I didn't. And this, I think just speaks to the importance of advocating for yourself. So I have seen all across Reddit, all throughout the podcast, the Facebook group, but the general consensus was to not trust an emergency medical setting with your type one care. And so
Scott Benner 1:00:33
Oh, my news is freaking out.
Adrienne 1:00:37
Oh, yeah. No, no, I mean, I had already come to that conclusion. But this was just really eye opening. And it's been great. I love love that whistleblower Colvin? Oh, yes. But they totally lost my train of thought. So my OB, I had asked him, you know, what happens with sugar control when you go in to deliver because they actually induced me a couple of weeks early, which I guess is common with type one, moms delivering babies. And he said, Well, normally, we put you on an insulin and glucose drip while you're there, and it would be in our care, just kind of hit the brakes. And I was like, I really, really would feel more comfortable. If I could do it myself. You know, I'm on this pump. Now. Can I you know, as long as I'm aware, and we're not doing like an emergency C section or something? Can I be the one responsible for my own blood sugar? And he said, Yes. When I got there to deliver, the nursing team was not aware of that. And so I didn't really bring it up at first. And then it was time for me to do a pod change. And they saw me filling my pod. Somebody came in and they're like, what's that? Yeah. So it explained to her and then she was all over me about my sugars. And I remember my mom had actually brought a Starbucks breakfast sandwich one morning, it's like, the second day I was there. And I had eaten that. And the nurse had said, Well, if your sugar goes above, you know, like, this one 110 or 120. I think it was 120. She said, I have to tell Dr. Swanson. And all right. So every time she would come in to ask me, I had been watching and my sugar was slowly creeping up. And I was at like, 136. And she came in and she asked me what the sugar was. And so we just like, This is terrible. But we lied to her. But I didn't want to give up control of my sugar. And I was like, Oh, we'll get it back down. And it was fine with sugars were great. I never went over 150 Anytime I was in the hospital, despite the the food that they bring, and they'd be arrived, no complications. He was a little over six pounds, his sugar was great. Couldn't have asked for a better delivery. But
Scott Benner 1:02:29
congratulations. I'm glad. I'm glad he was good. And I don't mind you lying about that. I think that's fine. I want to say this, though, with deference to my wife, who's lovely and nice of her to let me talk about her on hair, stuff like that. Before my wife's thyroid issue was diagnosed, and she was being medicated. I thought she was out of her mind sometimes. Like I was making plans on how to murder if I'm being on, like, not legally, like, I wasn't really like hyperbolically. I mean, I would literally think like, how am I going to like, explain to my kids that this is the lady I picked to make babies with, like, like, it was like that kind of like, ooh, like all over the place. And then she got the Synthroid. And like, in a week or two, it was just like all gone. I was like, Oh, wow, that's better. So and it was for years. Like I really thought she was like, cuckoo for Cocoa Puffs. There's a lot of cereal references in this one today. I don't know why exactly. But you sound like you eat the food. So you're down with what I'm saying? I do I do. Lady rolling into the hospital, the Starbucks sandwich or something else wrong?
Adrienne 1:03:35
Yeah. When I was there at diagnosis I had, I was actually sneaking food. Clearly, I had no idea what I what I was in for here or what I was dealing with. But yeah, it wasn't anything terrible. I had like a grocery bag that had some apples in it and some nuts. And like, you know, they had already dosed me for dinner and they left me for the night and I'm just sitting there snack and listening to the podcast, like totally uncovered fruit carbs. Yeah, things have changed. But
Scott Benner 1:04:02
I also know a woman local to me, who I definitely know wouldn't want me telling her her name. But like I've said this before, like she was known throughout this town as being like, I don't want to say the word but you know, the really bad one the word? Yeah, you know what I'm talking about. It's got four letters, and we don't use it very often. She for you know, years like to everybody was just the nastiest person and then smiling and then not like it was really strange. And then one day, she did an apology tour around the town and came and found everybody and said, Hey, I'm sorry, it turns out I had like undiagnosed Hashimotos. And, you know, I'm, I'm doing well now and I can only imagine how I must have been and I apologize, like literally. So that's amazing. I'm just saying. I mean, I know you were depressed when you were a teenager, but I mean, I go find five girls that weren't and you know, a lot of different conversation. I don't know. I'm super excited for you to find out.
Adrienne 1:04:57
I cannot wait to get into the Endo. That makes me also
Scott Benner 1:05:02
agent. Can I say something? I have no business saying? Sure. And I mean, this was love because I've interviewed a number of people with bipolar. And I really do. I've enjoyed every one of the conversations. I count some of them as friends. Like the whole thing. You don't have the vibe. Well, sorry. I know that's not technical, but there's a vibe and you don't have it. Interesting. Okay. So find out.
Adrienne 1:05:28
Yeah, me too. Me too.
Scott Benner 1:05:29
You feel why I cut you off.
Adrienne 1:05:31
You feel? No, I feel like I'm off my rocker a lot of the time. You know, just and I don't know if that's just because I'm hyper aware of how I'm probably coming off to the people around me now that I have this, you know, possible diagnosis in my brain? Yeah, I don't know. But I would be,
Scott Benner 1:05:49
by the way, if you have Bipolar to whatever, like I'm not saying like, try to avoid it if it's true. But no, I'm saying like, read out the other more obvious easier to figure out items before you jump to you know, that. Absolutely. That's all. Alright, I'm gonna let you go. You were terrific. I feel bad about what I said Mommy makes is a face to face lover that seemed over the line. And I'm definitely going to get a review. Listen, let me just say it right now. If you want to leave a review that said that was creepy or agent didn't deserve that or whatever, blah, blah, blah. It's fine. Just make sure you sign the review woke girl. Okay, we that's all just please. You know, you can't screw around anymore. Like, by the way, I'm fighting back. And I think a lot of other people are too. I don't know if you notice this in culture right now. But I think the pendulum swinging the other way. I think we're gonna get back to Saturday. What do you think of that? I'm hoping so. Yeah. Oh, it's coming. I can feel it. The wind is blowing in the right direction. Now, I think everybody's tired of pretending they're not thinking everything they're thinking. Anyway, that's a completely different story. And hold on one second. And I will say goodbye to you actually. Here's the thing I usually do when you're not being recorded. But for you. I'll do it when you're being recorded. Watch this. Adrian, thanks so much for doing this. I really appreciate it. Did I say anything that made you uncomfortable? Or is there anything you'd like to have come out of the episode? No,
Adrienne 1:07:15
I Well, I mean, maybe the comments.
Scott Benner 1:07:21
Were bleeping that all out. Don't worry. Aside from that. Yeah, yeah. No, I you understand I went for the most bombastic mood swing thing I could think of. Absolutely. Not that I think you're like, Wayne or something like that. You understand what's happening right now?
Unknown Speaker 1:07:35
I do.
Scott Benner 1:07:37
It's, what is it a week after we recorded
Adrienne 1:07:39
now? About a week and a half? I think Yeah. Okay.
Scott Benner 1:07:43
So I don't want to stifle you. So I'm going to say what I want to say at the end. That makes that a fair. But you contacted me a few days afterwards and tell people what you told me? Yeah.
Adrienne 1:07:54
So of course, as soon as we hung up, I was kind of going through everything that we had talked about. And in my I don't know if it was nerves for the podcast itself. We're not really sure what but just thought of a bunch of things that I had meant to say, points that were pretty important to my story, and at least my experience with the mental health side of things that we had discussed, and just wanted to make sure that I left the full story on the table and wasn't leaving anything out. So
Scott Benner 1:08:19
I asked you a question you felt like you didn't answer fully. Is that right? That's
Adrienne 1:08:23
right. Yeah, you had asked what a typical mood swing looks like. And I think that my go to example, on the spot was something about the dog tripping me as I went down the stairs, you know, kind of setting me off and making me angry. But that just seemed like such a superficial example, I suppose kind of a knee jerk answer to your question. And it's a lot deeper than that. So just kind of wanted to clarify and tell me about it. Yeah, so I guess what I should have left in there was that I am a pretty high strung person on a day to day basis. There's just kind of like a persistent tightly wound feeling in my chest. And it's not unhappiness in any way. It's just anxiety, just kind of jittery, that type of thing. And so without any sort of aid, that's my baseline. For me, it's kind of up or down from there. And the reason I decided to kind of reach out for help in the first place was a newly developed issue with anger and sudden outbursts that I was having. So I could swing from my normal state to an absolute rage over something that seemed insignificant, kind of what I had touched on before something small could totally started off. So it could be a basic miscommunication with my partner or a stubborn high blood sugar that I you know, hadn't been able to tackle, getting cut off on the highway, you know, being overstimulated from a sensory point of view. Sometimes it's just looking around at things that I can't get to because you know, I'm fighting a toddler and trying to work full time during the day. You know, things that normally I would have handled with ease. Suddenly, were becoming these five alarm fires that would physically affect me in the moment and then later spiral me into these unhealthy III thought patterns. So my vision would start to wave or go dark, when it would get angry, and my heart would race, you know, start sweating all these things, and it's momentary, but it was totally overtaking me, which was scary to look at those moments and realize that you're kind of out of control. And then it could go a couple of ways. You know, sometimes minutes later, it's, it's gone, and you just needed a minute to, you know, kind of freak out and bam, your day is back to normal, then you, you know, feel remorse for that anger or lack of control, it's scary to think of yourself that way. It's embarrassing the way that you act, and you get further from your family, your partner, you start to feel like a burden. And, of course, you figure out how to course correct and move on from there, but then you're, you know, kind of full of this self loathing for being difficult. And you just get down on yourself and wonder how long it'll be before the people around you. You know, just kind of get fed up with it, you get tired of yourself after a while. So, you know, it's hard when frustration over something small becomes, you know, something that snowballs into, you know, I can't believe I've been this way, and I'm not cut out to be a parent, my son's gonna hate me for acting like this, you know, just it turns into this, this big ordeal in your brain that that really just kicks you while you're down. And on the flip side of that, sometimes you can just stay elevated. And I think one of the main differences between bipolar one and two they say is that we don't reach that full blown euphoric mania. So when we're in an elevated state, you know, it's it's irritation or restlessness, I think an another element of that, that I kind of saw from my past when this diagnosis was first kind of brought to my attention was that in that hypomanic state, you can have this sense of self grandiosity. And so I was laughing, looking back thinking about all the times that I had this great idea, like, Hey, I'm gonna pick up this new hobby, or I'm gonna get graded this, this is the time that I'm going to make it in music, you know, the band is really going to take off this year, that type of thing. And I have spent loads of money on materials for new hobbies that I never gave a second look to. So there's like, unopened boxes of soap making supplies and stuff in my garage from like, four years ago. Because you just get on these winds of productivity, and you know, thinking that you're going to do something great. And then it just kind of falls to the wayside. Yeah, a lot of times that elevated state for me is, you know, a mode of rage cleaning of something has irritated me, I will just jump into binge cleaning mode. So those periods are probably my most productive, but also probably the most unpleasant for my family, I would think.
Scott Benner 1:12:30
What made you want to clear me because you gave an answer, right? Like, nobody would have listened to your episode and been like, Oh, she skirted the question, like so it was important to you, actually, when I got your email, and I don't want to be flippant about this, but I got your email. And I remembered at some point during the podcast going like, Well, I wonder if your thyroid thing is impacting your behavior? Maybe you don't have Bipolar, but when I got your email, I actually thought I know she has bipolar. Okay. Because Because every not every, but an overwhelming amount of people who I've interviewed who are bipolar. Follow up with an email telling me about the things they didn't say that they should have said, Oh, geez, it's very common for me. Like so. But is there a difference? Is there like, that kind of like manic like, oh, there's so many things. I didn't say I should have said things like blah, blah? Or did you just think I was trying to be honest. And I didn't give an honest answer. Like that was the part I couldn't tell about you. So I'm not sold that this is what's happening yet. That's why I wanted you to speak first, actually, because I kind of wanted to see what road you went down. No,
Adrienne 1:13:39
that makes sense. And I appreciate that. Because like I said, in the first time that I recorded with you, I am not even 100% Certain on the diagnosis. This is kind of new to me still learning about it. And you know, seeing what makes sense and what doesn't. When I first hung up with you, it was not so much a matter of not being honest about the story. It just was like all these things that had escaped my mind. And I had worked myself up so much for this, this chance to talk to you and to hopefully give back on a platform that has helped me so much it was like why and I don't want to leave holes in my story or maybe offend you know, other people who are in this, you know, mental health community by giving such a superficial or
Scott Benner 1:14:21
so you didn't have like a mad like, a mad dash feeling that you had to correct something. Well,
Adrienne 1:14:28
I did. And I don't know. Yeah, I mean, I wrote to you, I think I think it was just within a day or so. And it was
Scott Benner 1:14:35
quick. Yeah, it was quite surprised me when it came. I was like, Oh, here it is.
Adrienne 1:14:42
The most high maintenance person you've reported. Oh, no,
Scott Benner 1:14:44
no, I want to say no, not even close. I did an after dark episode once with a lovely woman like really lovely. And at the end of it, I made the mistake of saying like, well, if you want to hear it first, I'll let you listen. into it. Oh no. And months later, she and I were involved in an editing process that was I just thought, Oh, God, this is never gonna stop. And I didn't want to let her down, you know, but she'd get manic. And then she'd want a bunch of things fixed, and then show. And it's interesting, because everybody feels that way. There's not one person that doesn't record this podcast, and later in the day think, oh, you know what I should have said, but most people just go, No. And then that, then that's the end of it. Right? Right. But I also know the feet like I understand the feeling, because I'm a talker. And there's Listen, people who don't laugh at me, if in your car, I could turn this microphone on and talk for a full day. I just could, I know I could, I would get interested in what I was talking about, and dig through ideas. And, like, I know I could, but I also have the knowledge that I can do it again tomorrow. So if I'm in the middle of a conversation, and I don't bring something up, I think, oh, that's no big deal. The next time it comes up, I'll say it then. Because I have that opportunity. But you don't. This was your one shot to get your story out. So I feel that too. Definitely.
Adrienne 1:16:11
And I think well, first off, I don't think any of us would laugh or complain. If you were to turn on the mic and just talk for a day. It would be a treat
Scott Benner 1:16:18
my family like that. But I appreciate you. Thanks. Thank you.
Adrienne 1:16:22
Yeah, it just, it was more, I think, I guess more of not wanting to minimize this condition nicely, I guess, or offend the mental health community by you know, equating it to being annoyed with my dog for you know, tripping me on the stairs or something like that. I just really, that wasn't sitting well with me and I had left out, you know, the kind of the biggest part of this whole thing. You know, what made me seek the help to begin with was the sudden anger issues. I was having an Yeah, I'm not sure how I just totally skipped over that. I think, like I had indicated in my email. I just wasn't planning to spend as much time on the mental health portion of it just because the diagnosis was so new to me. Yeah, and uncertain, but I really appreciate you letting me know,
Scott Benner 1:17:05
I'm clarifying. I'm super happy to the one like my one, like reservation was like, oh, everybody's gonna send me an email. But like, I forgot to say something to and I'd be like, Alright, that's enough. Stop. So but, but um, I know I was happy to I mean, your emails like very well thought out and cogent I read it. And I was like, Okay, I see what she wants to do here. Like, that's, that's cool. We should definitely do it. The anger thing. And I have a couple of questions about it, if you don't mind. Okay, so anger, like, I understand, like zero to 100, for no reason. But then do you hang on to it later? Or does it dissipate?
Adrienne 1:17:39
I'm sorry, for my my Dexcom alarm here,
Unknown Speaker 1:17:41
don't be sorry. It depends, I
Adrienne 1:17:43
think on on what set me off to begin with, you know, I can think of a couple instances, just within the last probably five or six months or so. It's mostly in conversation with the partner, you know, you have a discussion about maybe something from the past that's come up that's a little bit heated. And you know, what, there? There's the specific example, what he was saying to me was not at all what I remembered him saying before, and I'm saying no, that's that's not what you told me, it's not what you told me. And eventually, it's like, something just snaps. And that's when all these, you know, visual disturbances started happening. And I can just feel this wave of angry coming over me. And that last, that last a while, you know, once that initial wave kind of passes, the residual feelings of just frustration, bitterness, stick around, until they're replaced with that, you know, kind of kicking yourself for a man, I was a real jerk. And you know what most of these people think. And I remember once took me probably three or four months before I even shared this diagnosis with my partner, it was kind of a harder one for me to swallow, just because I wasn't sure about it. But I remember after I had shared with him, conversation didn't really go very far. He didn't ask any questions was kind of like me throwing the information out there. And that's as far as it went. But a couple of weeks later, we were in, you know, sort of a disagreement. And he just said, I don't understand how you can flip from totally fine to fly it off the handle with no prompt, basically, how does this happen to you? And that was, that was tough to hear that was?
Scott Benner 1:19:17
Was this not Your? Your mo prior to recently? No,
Adrienne 1:19:23
not really. And that's kind of what made me question this diagnosis to begin with was because there's just so many big events that have happened in my life with the pregnancy with the diabetes diagnosis, you know, I just lost my dad. Three years ago, I was actually diagnosed the day before his birthday. But there was just a lot of large things happening in my life kind of that at one time, and I thought, Well, maybe it's just the stress of all that, you know, that's changing how I'm handling things. But it was not a point in my life where I wanted to see those changes in me, you know, it's more important now than ever to, to not be the person that To fly off the handle, you've got a young baby in the house. And that's just no way to be. But yeah, this is this is new to me.
Scott Benner 1:20:06
I'm gonna say something that feels like it's out of left field. And it might it might be, but I've been paying attention to this and picking through it for a few months now. Have you ever heard of the MTHFR mutation? I have not. So I think it's colloquially called the motherfucker gene. I think probably just because of the the acronym. Symptoms vary from person to person. And from variant a variant. If you do a quick internet search, you'll likely find many websites claiming the MTHFR directly causes a number of conditions keep in mind the research around it, and its effects is evolving. evidence linking most of these health conditions to the gene or currently lacking has been disproven. So it's one of those things that like, it might just be a bro science thing. Okay? Like, you know, I really don't know. But they say that something like 60% of us can't have like, have this problem where we can't I don't know if I'm gonna say this correctly. Even we can't methylate fully we can't methyl I forget exactly how the wording is, but that, you know, not being able to absorb this absorbed folate leads to cardiovascular problems, depression, anxiety, bipolar, schizophrenia, colon cancer, leukemia, chronic pain, fatigue, nerve pain, migraines, reoccurring miscarriages, and women of childbearing age pregnancies with neural tube defects like spinal, spinal bifida. And so the way it's treated is you just take a methylated vitamin that your body can pick up this folate, right? I am just like, I don't know, I'm so enamored by the idea of it. And I'm, I'm trying to pick through it a little bit because it can have other impacts to like digestion issues, and other stuff like that. And so many of these so many autoimmune issues. They have such similar, you know, symptoms, right. And I know that I could be 1,000,000% off like Adriana, seriously, I don't know what I'm talking about, okay. All I am is a person who has like 1000, you know, have conversations with people, I've probably, I mean, if I've recorded 1100 podcasts, and each of them are about an hour long. I've talked to people for a really long time and pick through their lives. And so many people talk about depression, anxiety, bipolar, on a type one podcast, I get it comes up a lot chronic pain, fatigue, people talk about migraines, like all this stuff. And I'm like, I wonder if like, Jesus, is it just something like this? Simple, you know. And so anyway, I bought a bunch of vitamins, and I'm spreading them out amongst a few people who I think might fit the bill a little bit. And we're just going to kind of see now you can actually get tested for it. It's like, yeah, you can get, like there's places online, you can get the test for like $89. And, you know, you could also have your doctor look at, I'm gonna use the wrong word. I'm gonna look closely. So I can say because you can ask your primary care physician to order the MTHFR blood tests for you. Although most insurance companies don't cover it, that type of gene test, it may leave you with a bill. There are places online that offer them. But there's this one thing you can test for homeo. Gotta watch this, I should have been ready to talk about this. Although I didn't know it was gonna come up actually. Just 23 me to help me if you have it. Oh, if you already have purchased 23andme test kit, you can log in to see your mth fr status by downloading your raw genetic data. Now, that's the thing where I heard 23andme stopped giving people access to their raw genetic data. Really? So I'm not sure if that's still I don't know if I have an account on this. I
Unknown Speaker 1:23:51
mean, yeah.
Scott Benner 1:23:57
As an added security measure, we're requiring that all customers choose a new password unique to 23 me reset your password I get well, this is fun to do on a podcast. Hold on. See if I can get through this pretty quickly. Send reset email. We've sent your email. Not air. Reset was pretty quick.
Adrienne 1:24:20
I was pretty sure you've been asked this but do you ever consider voice acting? Oh, did you?
Scott Benner 1:24:25
Adriana listened to me. Did you hear the dewdrop diaries episode? I don't think so. Okay, so gentleman comes on. Right? And his. He's the producer of a Netflix like animated series. And he was really great. I enjoyed talking to him. Actually. It's very interesting. His daughter is named Arden and she has type one diabetes. Oh my gosh, it's very there's a lot of similar like weird similarities, right? So we had to put in my username. And I said something I don't know if somebody online said don't like you should let Scott to a voice On the show, and he goes, Well, if we get a second season we will. Then he got a second season. I did not hear back.
Adrienne 1:25:08
Okay, he was paying down that door. I
Scott Benner 1:25:10
don't know what I would do with all that. Money. Yeah, but it does sound fun. I have to admit.
Adrienne 1:25:17
Yeah, I don't think so. Yes, totally let loose. Alright,
Scott Benner 1:25:21
so the problem when I use this password, other options, choose my own password. I don't mind when Apple like suggests like a 97 digit password, but sometimes it doesn't save it in the end, then I don't know what the hell it is afterwards. Wait, my new password is not long enough. All right, we're not doing this now.
Adrienne 1:25:47
Sorry to derail you.
Scott Benner 1:25:50
By mutation though. Yeah, me too. So I just wish that sorry. To 3d. Try to make up the password real quick. I've made up a password and song. I didn't know how to do it anymore. The machine does it for you now. When I grew up, not so uphill
Adrienne 1:26:11
both ways in the snow.
Scott Benner 1:26:12
Oh my God, for sure. Now they alright, I changed the password. Now. Enter your verification code. Oh, Christ. Jesus, remember, and please remember me I don't want to do this again. Once I get in there, and I don't have an account or something. Oh, I do have an account. Okay, now, how do I get to raw genetic data?
Hold on a second.
I gotta Google that right? For all genetic data can I get raw data from 23 you can access your alternate data is coming through me account using the bras bras browse raw data feature you can view brought over the hell is that? How come I don't just see that. But a tease this was almost I feel like I have to come through Family Tree View All DNA relatives, surveys and studies edit answers, publications, research over your health trades. My health and action plan. What the hell? What are your DNA book DNA relatives? I did this because I'm adopted. And I thought like one day like, obviously, somebody's gonna pop up that I'm like, Oh my God, look, I'm talking. It never happens. Like I'm, you know, the closest it's gotten is a second cousin.
Adrienne 1:27:25
If any family is something my my partner has actually adopted. Also, he did ancestry.com and was able to find some grandparents, uncle and his mom, but not reached out to anyone yet.
Scott Benner 1:27:38
I actually found a second cousin who was Facebook friends with a friend of mines daughter.
Adrienne 1:27:43
Oh, my gosh, you're kidding. Is that just because of regional locale idea.
Scott Benner 1:27:46
I reached out and I was like, Would you mind like bridging a gap here? And she's like, I'm not comfortable with that. I was like, Okay, wow. So yeah, that's okay. How in the hell view my profile? Yeah, that's my socks, traits, wellness. View All wellness reports. Can you search that? You can search it pause. I'm going to type in the MTHFR. In search your role genotype data? Oh, look at that. That was pretty easy. Search button kids, it works. Browse your genome data is raw, uninterrupted format, your A's or T's or G's or C's, you can search for specific genes, markers positions of interest. While there's a lot there's a ton of this MTHFR. How am I supposed to know what any of this means? This is an advanced view. Yeah, no. Marker, assembly position variants, your genotype. I'm clicking. Welcome to the reference report. I feel like I'm on that ride in the original Jurassic Park all the time. When stuff like this happens, then they're like, Hey, have you You remember when the little Anyway, the thing was talking to them? Very details. There's a lot of data here that I don't. And I'm not going to understand splice donor region variants.
Adrienne 1:29:20
On 23andme is blog they say that? The short answer is no they do not test for mutations in the Mt. FHR. Gene says that they include more than a dozen variants on their reports, but they don't have a report that specifically test for mutations. Whatever that means. Oh, the
Scott Benner 1:29:38
internet's let us down again. Sorry for the No, don't be sorry. It's not your fault. Whose cheese? Yeah, well, maybe we'll take this part out. Who knows? But I'm gonna find out more about it. Like I think I'm going to get the testing done like so because I was talking to a person the other day and we were like Googling around a little bit. And the next thing you know, we were talking about Ehlers Danlos And there seems to be a connection there, perhaps. And I was like, Oh, this is interesting. So I have a bunch of like, I have a bunch of information saved. And I have a note to myself to do an episode about it. So I'm gonna try and see what happens. But right it it just it's one of those things like, listen, is that the answer? Probably not. But the idea that you're in $89 test on the internet away from finding out that you can't process, you know, folate properly, and you just need a vitamin. You know what I mean? Like, that's, that
Adrienne 1:30:30
could be the missing piece. For some people.
Scott Benner 1:30:32
I hate that idea. Like that. I know, it's not going to be for most people, but like, I hate to do this for somebody. And we're just all sitting around and not doing anything about it. I hope that makes sense or not. No, that makes total sense. It's the way I feel when people don't take their thyroid medication correctly, or they don't use enough insulin. I'm like, Oh my God, there's just this tiny little thing to do. And you'd be so much better off. And you don't know about it. But I do. Like, I wish there was a way to get to those people all the time. Anyway, I'm going to figure this out. And then I'm going to talk about on the podcast at some point, but excited to hear what you learn. One, we'll see what happens unless maybe you're gonna you know, who knows you yell at somebody and they're gonna like, you end up in jail. Don't yell at anybody too loud. Okay. Try. You're the most conscientious person about their mental health that I've ever spoken to so far.
Adrienne 1:31:16
Yeah, well, thanks. I feel like you have no choice but to be now because you're just I think we talked about this last time we spoke but just afraid to step on any toes. You never know who you might offend. There's
Scott Benner 1:31:28
something about the way you approach this. And the diagnosis that don't go together for me, and I can't and that's very colloquial, I obviously don't know what the hell I'm talking about. But it just feels it feels weird to me somehow, if that makes sense
Adrienne 1:31:42
or not. It makes sense. Because I feel the same way. And I like I said, don't ever want to write this off. Or yeah, of course, belittle it in any way. It is. It's a it's an important thing. And I know a lot of people really
Scott Benner 1:31:54
struggle, of course, yeah, no, no, I agree. I'm just talking about between you and what I know of you so far. Anyway, if I figure something else about this, I'll let you know. Please
Adrienne 1:32:04
do. And then just to kind of close the loop, I I had an appointment with my endo a couple days after I last spoke with you. And I had told you I was going to run the thyroid stuff by her. And we had done some lab work prior to that appointment. And what she saw she wasn't really concerned with she said she would keep monitoring, but right now she didn't think thyroid would be behind any of this. So
Scott Benner 1:32:25
what was your TSH in the testing?
Adrienne 1:32:27
I think it was like point 661 Or something like that
Scott Benner 1:32:31
seems very good. So yeah, I'm sorry. It would have been nice if it was an easy answer. Yeah,
Adrienne 1:32:37
let's see. Yeah, keep keep working. But like I said, I really appreciate you taking the time to let me come back on and clarify and it's
Scott Benner 1:32:45
my pleasure. I'm glad you took the time. Thank you very much. That's awesome. It takes care of Scott to hold on one second.
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