Scott Benner 1/30/23 Scott Benner 1/30/23

#837 Marvelous Marla

Mar has LADA, Hashimoto's and a few other issues.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends, and welcome to episode 837 of the Juicebox Podcast.

On today's episode we'll be speaking with Marla, she has diabetes Hashimotos something going on with her kidneys. And another thing that I can't pronounce, so why don't we wait till we get into the episode for you to find out about that. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. And for those of you who are getting ready to skip through the ads, I've got a new advertiser today, and they have a 35% off coupon code for you. So maybe don't touch that button so quick. If you have type one diabetes, or are the caregiver of someone with type one diabetes, and are a US resident, please go to T one D exchange.org. Forward slash juicebox. Join the registry, you complete the survey. And when you finish that survey, you'll be helping diabetes research to move forward. It's super simple, completely safe, and you will really be helping that link again is T one D exchange.org. Forward slash juicebox. It really does just take like 10 minutes. This episode of The Juicebox Podcast is sponsored by cozy earth. Because the Earth has you covered for your bedding bath and sleep wear needs. There has been a cozy Earth product on Oprah's Favorite Things list for five years in a row. I'm going to tell you all about the sheets that I'm sleeping on right now, a little later. But for now, here's what you need cozy earth.com. And when you check out use the code juicebox to save 35% off your order. What'd I just say? 35% 35% of you spent $1 You save 35 cents. I understand $2.70 You understand the math of this. It's a fairly significant amount of money. They have a ton of stuff. It is all incredibly comfortable. I will tell you more about it later, like I said, but for now cozier.com 35% off at checkout with the code juicebox it's all one word ju ice box. The podcast is also sponsored today by touched by type one. This is a wonderful organization that I'm talking about. Just go to their website and check out what they're doing for people touched by type one.org NO BULL you understand I'm saying set a small group of dedicated people helping others with type one diabetes. Check out their initiatives like the D box program and dancing for diabetes. Find them on Facebook and Instagram touched by type one that will warm your heart. Take five minutes today to feel better at touched by type one dotwork.

Mar 3:07
My name is Mark and I am diagnosed with LADA five years ago. How old are you? I will be 56 later this year in October.

Scott Benner 3:20
That's a good that's a good age.

Mar 3:22
Yeah, I guess so. Better than not.

Scott Benner 3:25
You know, you and I have a lot in common Martin. Yeah. Now did you just say your name differently because of an accent or am I saying Marla and I shouldn't be it? No,

Mar 3:33
no, a lot of people call me Mark. My name is Marla. But a lot of people call me bar so either one is fine.

Scott Benner 3:39
Oh Mark your mark. Okay. 56 Lada for five years,

Mar 3:46
five years now. Yeah.

Scott Benner 3:48
Interesting. Tell me how they explained allotted to you?

Mar 3:53
Well, it was kind of a long process because I was told five years prior to the diagnosis date that I had type two. So it started with my primary care doctor saying, you know, your blood sugar's a little elevated, I think you're pre diabetic, start watching your diet, you know, try to get more exercise. And I have two friends that are type two close friends. And so I just started doing what they were doing. And that went on for a while, about a year and then she said, Okay, now you're diabetic. And she added Metformin in over the next probably four years. You know, I really I struggled. I mean, I did everything my friends were doing their numbers were really good. Mine just slowly kept rising. And my doctor kept saying to me, you know, I would tell her, I promise you, I'm doing what I'm supposed to do, and I don't know why it's not working. And she would say, Well, don't worry, I know you're trying. I think yours is autoimmune anyway. But, you know, when she said that to me, I didn't understand what she meant because I I had always thought that only kids were diagnosed with type one. And I didn't make that connection. Oh, autoimmune type one. I thought that she meant because I have so many other autoimmune disorders. It was making the diabetes difficult to manage. Oh, I see. I never, I never asked her like, Well, what do you mean by that? So things got really bad. And my numbers got really high. And that's when I got the lot of diagnosis.

Scott Benner 5:28
How long did really bad last?

Mar 5:31
Um, you know, I, I had a hysterectomy the summer before my diagnosis. And so for several months following that, I really felt horrible. But I attributed that to recovering from the hysterectomy because it's a big surgery. And, you know, I was extremely tired. And I felt nauseous all the time. And my numbers were high, but I knew that they, you know, I had been through a surgery and I was recovering. And so all of these things that were going on, I just thought, well, this is because of the surgery, you know, and so it's probably several months.

Scott Benner 6:08
Wow. Why did you have the hysterectomy?

Mar 6:12
I had endometriosis, which I've read is frequently associated with autoimmune disorders, but I couldn't I can't find anything that says Yes, it definitely is. And so it basically you know, was like a, just a never ending period. And the only way to cure that is to remove the uterus,

Scott Benner 6:31
a medical condition characterized by the growth of cells that build up inside the uterus. That sounds like you. Yep. Okay.

Mar 6:38
Yeah, I was happy to have them take it out. They couldn't do it fast enough.

Scott Benner 6:42
Do you have children? I do not. Was that ever an issue for you?

Mar 6:48
You No, no, I was okay with never having I never really figured if I did, I did if I didn't, I didn't.

Scott Benner 6:54
I sat through a two and a half hour presentation last night of the high school that made me rethink having children. I'm trying to see if I can find a relationship to it. And autoimmune is an add in Wow. How do you say it add an add no

Mar 7:09
meiosis.

Scott Benner 7:11
Is it something in

Mar 7:12
my my gynecologist explained to me as being like she said, it's an endometriosis that's confined to the uterus is basically what you're dealing with. And she said, the uterus just continues to once it starts, you know, getting into this. Oh, my computer's making noise. I'm sorry. There's once it gets start into this, you know, stage where it's just continuing to bleed. It just won't stop. And I had a 60 day period, which made me almost want to lose my mind.

Scott Benner 7:42
Man, period means stop. Yeah.

Mar 7:47
I know. Someone tell my uterus. Yeah. So that's what led to the diagnosis because she, you know, they did a DNC and they said, Oh, it'll, it'll, it'll be okay. Now you're just probably starting menopause. And I was like, Well, okay, I'm a little. Seems like I might be a little young for that. Yeah. And she's like, No, not really. And she said, it takes a long time. I said, Okay. And I remember and I really liked her, but she said to me, I don't know why this happened, but it's not going to happen again. And I thought, okay, that doesn't make sense. But, um, and so the DNC kind of fix things temporarily. And then it came back and she said, Well, we need to do an MRI. And that was how they diagnosed it. And then she said, You need a hysterectomy. That's the one way to fix this. Okay.

Scott Benner 8:31
All right. Yeah. You said you have other autoimmune diseases. What else do you have?

Mar 8:37
I have rheumatoid arthritis. I have IGA nephropathy. I have Hashimotos thyroiditis. And then the latter.

Scott Benner 8:48
What was the one between RA and Hashimotos?

Mar 8:51
It's IGA nephropathy. So it's a condition where basically you build up too much protein, your kidneys, which then makes them stop working.

Scott Benner 9:01
Have you had, are you on dialysis?

Mar 9:05
No. So my kidneys are still functioning. I was diagnosed with that, in 2007. If you were to look at my kidney function, it's slowly decline. Over the last, what, 15 years, but I am right now and probably speak, I wrote they fluctuate between stage. I don't know why they split three into two, they'd have stage three and stage three B, I'm not sure why they do that. But I fluctuate between those two stages, which is somewhere between I think 50 and 60% of my kidney function remains.

Scott Benner 9:41
What came first. Did you get the Hashimotos first, so it

Mar 9:47
was the rheumatoid arthritis first, then the IGA than the Hashimotos? One Well, that's that was the order of the diagnosis. I you know, honestly, I could have had, they told me I couldn't have the IGA for years, but Before it was diagnosed, it was diagnosed by accident.

Scott Benner 10:05
All right, how old were you?

Mar 10:08
So that was in 2001. So I would have to do some math, I think.

Scott Benner 10:14
Hold on 2156. This is my time. 3035.

Mar 10:18
Yeah, somewhere. And then I've heard your comments about math several times.

Scott Benner 10:22
I was like I saw I saw simple low numbers. I was like, I can get this one. So how did ra percent for you?

Mar 10:31
So Ra was just a pain in my hip that was persistent. And I, I had was buying a house and I can remember, it was Thanksgiving. I was buying a house the following spring, I moved in. And I can remember thinking if this pain in my hip doesn't go away, I'm going to have trouble moving. And it took about nine months for them to finally give me a an RA diagnosis, because they said typically, it's symmetric, and mine was asymmetric. And it still is. And they said, well, that's just not, you know, we think it's rheumatoid arthritis. But that's not how it presents. So they looked for everything else. And they it took them a long time, they bounced me back and forth between rheumatology and orthopedics. And they finally I think, just couldn't find anything else. And it presented as RA in every other way. And they they said, Okay, well, alright, your rheumatoid factors are through the roof. We think it's Ra. We don't know why it's asymmetrical. But this is what you have.

Scott Benner 11:30
Just in the one hip.

Mar 11:33
Well, it later got into the other side, but it's never thankfully, I've never had issues on both sides of of any joint at the same time. It's always just one thing.

Scott Benner 11:42
Do you take any medication for it?

Mar 11:44
I did for about five years, but I don't anymore. And I haven't since you know, the early 2006 Or seven, I stopped taking meds?

Scott Benner 11:53
Did the meds work? Or no,

Mar 11:55
you know, they did initially they took they had to go in and do I forget what they call the procedure, but they stick a big needle in there and pull the fluid out of the hip joint. And they did that I was in the hospital overnight, because my leg was actually pulled because there was so much fluid in there. And they pulled the fluid out and put me on meds right away. And I was good. And I stayed on those meds for probably four or five years. And then I just, you know, I didn't want to stay on them if I didn't need to. Because I mean, it sounds probably bad, but you can't drink. And I'm not I don't have issues with alcohol. But I do like to have drank here and there. And I asked my doctor, can I can I come off this medicine? Can we see how it goes? And he's like, Yeah, let's try it. And so it was fine. And so I've stayed off of it.

Scott Benner 12:44
Okay, so you. You got off the medication, so you could drink once in a while?

Mar 12:49
Yeah, I like to have Yeah, I like to have whiskey once in a while. At that time. I didn't drink whiskey. But, you know, I didn't want to break the rules. I don't want to put my liver at risk by drinking alcohol when I'm on this meds on these meds. And, you know, I couldn't couldn't do that. And, you know, I also thought, well, you know, it might be good to just see how things are going without the medication. And it turns out, I mean, I've been off the medication since 2005 2006. And I I've been okay, so I feel like, why take it if I don't need it,

Scott Benner 13:20
okay, means a level of pain and discomfort you're okay with?

Mar 13:24
Yeah, I mean, there are plenty of days that I don't have any pain at all. But then there are days when, you know, just last week, one of my, the joint on my left foot of my big toe was hurting so bad. I couldn't walk for a couple of days. I mean, I didn't walk, but it was very painful. And then I woke up and it was done. It's fine. And that's how it's always been, you know, I'll have a joint that just doesn't want to work, right. And it hurts for you know, X number of days. And then it just goes away, which is, you know,

Scott Benner 13:52
frustrating that and is it? I mean, are you keep talking about a little bit when it was first happening? What's it like to get a diagnosis like that, that doesn't seem very impactful.

Mar 14:04
So I mean, it was, you know, it was a little frustrating. I was in my mid 30s. And my I remember my rheumatologist telling me, oh, you're gonna get other autoimmune disorders? And I said, why? What do you mean? And he said, Because you do if you get one, you get more. And so that was a little frightening because I was, you know, still young at that point and thinking, Well, what else is gonna happen? You know, and then you if you you know, if you look up pictures of people with rheumatoid arthritis, their hands sometimes, well, those are worst case scenarios, you know, but their hands are like, you know, they can't use them. And I was afraid, you know, what am I going to do if that happens to me, and how am I going to, how am I going to be independent and, you know, so it was kind of kind of frustrating, kind of scary, but then I just thought, well, you don't know that that's going to happen, and it may never happen, and it hasn't, I mean, I have some I don't forget what they're called, but like my knuckles have some nodules on them, that you can see they're not Huge I can kill them. They bug me, but they don't really do anything about them. But I don't have. There's no part of my life that's impacted to the point where I can't do something because of the RA. Okay? Which if things stay that way, I'm fine. Okay.

Scott Benner 15:15
Okay, so you're 35? Around 35 When this happens, how long after that? Do you hear about the kidneys?

Mar 15:23
Um, well, it was 2007. And I had the flu. And I mentioned to my doctor, just, you know, off the cuff. I said, Oh, you know, I think I was really dehydrated, because my urine was like coffee color. And she said, What do you mean, it was coffee color? And I said, Yeah, I said, you know, I couldn't keep anything down. And I think I got really dehydrated. And she said, Well, let's check that. And so whatever she saw on the results of the urine tests, she sent me to a nephrologist, who said, well, we need to do a kidney biopsy. And that's how they diagnose that. And so what happens with that disease is it's often not diagnosed until it's in advanced stages, because the symptoms are, you know, I don't know, not there like you don't, you know, I was lucky, I guess that I had that issue with the coffee colored urine, because otherwise they they wouldn't have caught it, you know, anywhere near that early.

Scott Benner 16:24
Okay, so Hashimotos comes when

if you want to see people doing good things, look no farther than touched by type one.org. That's all I'm gonna say. Check their website out, find them on Facebook, find them on Instagram. And then you get to feel good about what people are out there doing. Touched by type one.org. There really are good people in the world. I don't want to get too inside baseball here. But I got an email recently, a couple of weeks ago. And the email says, Are you looking for new sponsors? And I said maybe depends, I only take quality stuff. And the person says, Well, I think I have something for you then that you could get behind. And I said, well tell me more about it. And he starts telling me about cozy Earth. A cozy Earth makes bedding. They make sleep wear, bath towels, that sort of stuff, right? Anyway, the guy says, Why don't you to try it out. I said, alright, I'll talk to them. I have a nice chat with a lovely person who sends over a set of sheets for my wife and I. Now let me tell you something, these sheets are made of something called fisco. Bamboo is silky, and soft and cool and warm. And I don't know how it's neither hot or cold. But it's amazing. I'm having wonderful night sleeps over and over again. Then time to wash them completely adorable. Right in the washing machine. Here we go. Right back on the bed. I'm trying them again. I say to my wife, what do you think about this, she goes, you couldn't got me a pair of pajamas. I said, Well, you know, like they just sent over the sheets. So we've been trying it out. For weeks. Now. We're not going back. And please don't tell my wife. But I logged on to the site today. cozier.com. And I use my own coupon code to get my wife a pair of those pajamas. And this coupon code. This isn't just for me, it's for all of you juice box at checkout ju ice Bo X. And just like that you save 35%. I'm going to just say one more thing about the sheets. Do I feel silly going on like this about bedding? Not really because it's that good. But they showed up really well packaged in this really kind of lovely tote bag that my wife she made off with right away. She's like, I'm keeping that and I was like, all right. I mean, how did she know? I didn't want it. You don't I mean? I mean, I go shopping sometimes. I couldn't use the tote bag, but no, okay, she gets the sheets and the tote bag. I say okay, that's fine with me. I need to tell you a couple more things about cozy Earth. They've been on Oprah's Favorite Things list for five years running. The sheets that I'm sleeping on are made from responsibly sourced viscose bamboo. And all of their products come with a 10 year warranty. Because the Earth bedding is temperature regulated and is available, not just in that visco bamboo but also in linen. There you have loungewear that provides optimal comfort. And by the way, don't take my word for it because I haven't received my wife's pajamas yet. Although I don't think I'll try them on. Will I know, I haven't received my wife's pajamas yet. Maybe I'll go back home and buy myself something. I'm going by what somebody told me on the private Facebook group for Juicebox Podcast. When I told them I'm gonna have a coupon code for cozy Earth. They're like, Oh my God, and they started going on about like sweat pants or something like that and how much they loved them. I don't know. I didn't read the whole thing. Anyway, Valentine's Day is coming up. So snuggle up in cozy errs best selling sheets or sleepwear. Get some towels, do your thing. Don't forget to use the coupon code to save 35% And I think when you log on the website, there's an opportunity for you to join the mailing list and get a $50 gift card on top of all that. So listen Juicebox Podcast listener It's time to upgrade your sleeping situation like me. It really is worth a moment to check out the website. The sheets are incredibly comfortable, not just with temperature, but feel and touch. And I can't believe I'm saying this. I like sleeping on these sheets. I never thought I'd have an opinion about sheets. But then here we are. Check them out goes the earth.com juice box at checkout.

Mar 20:33
That came probably around 2010 ish. And that was because I had my bloodwork showed a ton of calcium. Like my calcium levels were too high.

Scott Benner 20:46
Yeah, high calcium. That's one of the indicators. How about Yeah, that's how they caught it. Yeah.

Mar 20:51
And they said, Well, let's take you I was on some medication, I can't remember what it was that they said could elevate your calcium levels. So they, they took me off of that, and put me on something else. And so it didn't didn't, you know, resolve and kept getting worse. And I don't remember all the different tests that they did. But it ended up that I had a large benign tumor on one of my parathyroid glands and I had large tumors on my thyroid, and they said the parathyroid has to come up, you can't leave it. And while we're in there, we're going to take most of your thyroid because it's covered with benign tumors. So they did that. I still have little bits of my thyroid left. But you know, I take Synthroid everyday and I will for the rest of my life.

Scott Benner 21:36
And is that fairly well maintained? Do you see a lot of symptoms from thyroid or no?

Mar 21:42
No, I think it's pretty well maintained. My numbers are usually pretty good.

Scott Benner 21:45
How about how you forgetting the numbers, how you feel like you can get rested, your hair doesn't fall out, etc? Well, I

Mar 21:52
do have what I think is probably more hair loss than I than I should I mean in the drain, but I my hair doesn't look thin. And I am frequently tired. But I don't know if if Teague is from Hashimotos or not. I just don't know

Scott Benner 22:10
when you said your numbers are good. What's your TSH?

Mar 22:14
Ah, you know, I really don't know what I can tell you. Yeah, take a look. Yeah, when you look, let me log in. I just have bloodwork because I just reached out to my doctor. In fact, I see her later today. Perfect. Um, but I did reach out to her because I said, you know, I'm really kind of tired all the time.

Scott Benner 22:31
Scott's gonna help.

Mar 22:36
And I said, you know, I thought maybe my iron was low or something. Let's see test results. 1.440 So

Scott Benner 22:49
it is good. Yeah. All right. So you're gonna check your I do an iron panel. Check your ferritin that kind of stuff.

Mar 22:54
Yeah, she did all that my ferritin was only 18 which is on the low side.

Scott Benner 22:59
Oh, much too low. Yeah, yeah, yes. Yeah. So

Mar 23:03
so I could that could be why I've been tired lately. She told me you know, get a multivitamin and start taking iron.

Scott Benner 23:09
That takes forever, but okay. Yeah. Ask her if she'd like to get you an infusion.

Mar 23:15
I couldn't ask her about that. Actually. i Yeah, I'm gonna see her later today. So I will

Scott Benner 23:18
I had one. Lovely Marlo. Really? Yeah. So it goes in. And then once your body starts making new blood cells, it makes them now with the correct amount of iron in your system, and you just feel better. Oh, really? Okay. Well,

Mar 23:34
definitely ask her. Thank

Scott Benner 23:35
you. But we also want to know why your iron is so low. Well, that's been

Mar 23:39
an issue I've had for as long as I can remember, every time I have bloodwork, they tell me, you know, your iron is low every time it's pretty iliac

Scott Benner 23:47
or a see like even a celiac intolerance.

Mar 23:53
Well, they tested me for celiac and that was negative.

Scott Benner 23:55
Okay. Do you do you think you don't do well with gluten? No, I think I do fine. You're fine. Okay. Yeah. So then it's an absorption thing, I would guess. And I'll tell you what helped for me. Let's everybody remind each other I barely got through high school and I'm not a doctor, but you know, podcasts and all that like sorbic acid, vitamin C, along along with my iron supplements, so I could take iron supplements and it didn't matter. Not they didn't touch anything, that I got the infusions and got to the point where I thought, oh, gosh, I'm a person who's gonna have to get infusions for the rest of my life. This will be fun, because they only lasted for like six months or so. Yeah, but then it turned out I just wasn't absorbing the iron. So now I take a quality iron supplement along with the sorbic acid, same time, two tablets down and my body picks that up. Fine.

Mar 24:50
Okay, I'll definitely try that.

Scott Benner 24:51
Give it a whirl. Well, thank you. I don't want you to be tired. Yeah,

Mar 24:55
I don't want to be tired.

Scott Benner 24:57
Honestly, Marla, you got enough going on. You don't need another thing. I agree. So now after hearing about all of this, yeah, I'm baffled that when you get a diabetes diagnosis that someone doesn't go, well, she has RA and Hashimotos. And this kidney thing, this is clearly type one diabetes.

Mar 25:16
Yeah. Well, I am to now that I know more, but at the time, you know, I knew nothing about this. I mean, I, like many people had always heard that only kids are diagnosed with type one. So all the times that she said to me, and it was many times, you know, don't worry, I know you're trying, I think this is autoimmune. It just never occurred to me to say, What do you mean by that? I think like I said, I had all these autoimmune things happening. And I thought, well, that means that it's these other diseases are making my diabetes difficult to manage. It's just the way it is.

Scott Benner 25:46
Yeah, I understand. Yeah. But you know what I'm saying, though, like Lada or type one, whatever it is that you, you know, have an I don't, I'm gonna dig into it with you. Sometimes. I don't even know if it matters, to be honest, what they call it. But I just don't see how a doctor doesn't see other autoimmune issues and not put you on Metformin. Well, I wasn't meant for I'm saying, I don't know how that happened to you. Yeah, it's just it's, it seems a little obvious to me. Like, you know, when you're watching a movie, you're like, that's the guy that's gonna die first. And everyone knows, like, they could have wrote this a little better. So we all didn't see immediately that the character of Eddie is going to be murdered. And it just seems to me like it. It was kind of set up for them to understand.

Mar 26:32
Yeah, no, I would agree based on what I know now. And I mean, looking back, the Metformin did nothing but make me sick. I couldn't take it half the time.

Scott Benner 26:40
Yeah, I wouldn't imagine did you lose weight on it?

Mar 26:43
I did not. Which was a question my doctor used to ask me all the time. And she also she put me on Giannoulias put me on Victoza. And, you know, I didn't lose any way through any of it. Although, you know, I will say it's, it takes a lot for me to not power through and eat something if I am hungry.

Scott Benner 27:03
There you go. Your head down girl, huh? Yeah. Done.

Mar 27:09
I have to have some extreme nausea. Otherwise, you know, it's time to eat and I'm hungry.

Scott Benner 27:15
Okay, so going back to when you realize Lada? How does How is Lada explained to you? And is this fine endocrinologist or a general practitioner?

Mar 27:27
No, just my internal medicine doctor, she's she, I had been on vacation. This was you know, the December after my, my summer hysterectomy months leading into this was not feeling good thinking it was the surgery. I went on vacation like I always do over the holidays that come back from vacation and I you know, not rested, like you would be after a vacation. You know, my job, my job is stressful. I commute an hour plus one way, you know, I can think of all kinds of reasons why I would be tired at the end of the day. But this was more than that. And so come back and vacation. I'm not any better. You know, and I tested my fasting glucose that morning, and it was 450. And I thought, well, I'll get to work. I'll eat some breakfast. It'll come down. I don't really know why I thought that the breakfast I chose was oatmeal. And tested two hours after and it was 583. And so if a faculty member came by my office, I knew he had diabetes, because he had told me before about his diagnosis story. So he stopped by for something. And I said, you know, Hey, um, my blood sugar is 583 Do you think I should call my doctor? You know, I don't know why I even asked him because I knew the answer. And his eyes, you know, popped out of his head. He's like, yes, you should call her isa while he was I have a meeting that I have to go to. I'm coming back in a half an hour. If you haven't heard from her. You and I are walking over to the endo clinic right now. Because I work in a hospital. And I said no, no, no show. So she'll call me back. So I might chartered her. And she's very good about answering it. She did within like 15 minutes. And she said, come to the clinic. You need insulin. And so the conversation I had with her she said it again. At that point, I think yours is autoimmune. And I finally said What do you mean by that? And she said, Well, I think that yours is type one. And I said I didn't understand the kids that you've had could be diagnosed with that if you weren't a kid only kids get that and she said no adults can get it too. And so I went over got the insulin, you know, did my first insulin shot within two days felt night and day better. And they said you need to make an appointment with an endocrinologist and so all the information that I got from my primary care doctor, was you know, she said my basil I don't really or when she sent it out, I did a shot at night. It was I think it was Lantis or basil blur or something. And she said, if you eat a big meal, take four units, if you eat a small meal, take two units, and you know, get into siendo Well, it was a four month wait to get into see an endocrinologist. So I started researching lotto and reading about, you know, decks, comps and insulin pumps, and, you know, all these terms that were brand new to me. And so I called her back within about a month or six weeks and said, I don't want to stick my fingers because once I knew I had something that I could do something about now I have insulin, like, you know, before, when I thought I had type two, and nothing I was doing was working. You know, you after a while, you just kind of think, well, you know, um, nothing I'm doing is working anyway. So why am I trying? So once I figured out like, okay, now I need to take insulin, and I can manage this number. I'm sticking my fingers like crazy. And I figured out right away that this is not going to work. I don't like this. So I think within a month or six weeks, I said, you know, I read about this Dexcom Can I have this? And she said yeah, absolutely. And it took a while for the you know, paperwork and whatnot. But I was on the Dexcom G five by early April, because this all happened early January. Okay. So three months, and I had a Dex which I love. Um, and then by the time I saw my endocrinologist, probably in May. I had researched pumps. And I said, I don't want to give myself shots anymore. Can I have an insulin pump? And she said, Yeah, which one do you want. And I had researched the T slim and the Omni pod and I was leaning toward the Omni pod because I didn't want the tubes. But I knew that I knew that this decision was going to last me like, you know, for years, and I thought I'd better meet with the reps and talk to people in real life of real people. And so just reading online about these products before I make a decision, but I really kind of knew that I wanted to Omni pod and that's what I chose. And that's what I've been on ever since.

Scott Benner 32:11
And that's been really beneficial for you being on a poll. Yeah,

Mar 32:15
yeah. I mean, my numbers are. They're not where I want them to be, honestly, but they're not horrible. And my endocrinologist is always telling me you're you know, you're too hard on yourself. diabetes is hard. You're doing really well.

Scott Benner 32:29
Well, that's good. Where are you at that you aren't happy with?

Mar 32:32
Well, I my agency is 6.5 Not bad. But I would like it to be lower my time and range is 86%. Also not bad. But I would like it to be above 90.

Scott Benner 32:43
What do you call? What do you call in range? What's your range you're shooting for?

Mar 32:47
Um, well, I have my alarm set, according to what I learned on your podcast now. Um, so my low alarm is 70 my high alarm is 130. But the in range on the decks is just the normal 7180 Yeah.

Scott Benner 33:04
How often do you think you're between 7130? Um, maybe half the time? Yeah, that's probably where you'll make up that other half a point of a one C is losing those. Those 50 points between, you know, I don't know. 3130 and 180. Right in there. Yeah, yeah. And so what do you think? What do you have happened? You have spikes at meals?

Mar 33:32
I have. I have the same exact breakfast every day. And I can't figure it out. And I don't know why. Yep, I eat the same thing every day. I mean, I was doing that before I listened to your podcast of you know, eat the same meal figured out. And so what I started doing is writing down like, Okay, this is what my insulin or my blood sugar was when I Pre-Bolus Here's what it is when I ate. Here's why it was right after I ate. Here's what I did. Sometimes I do a Temp Basal. Sometimes I do an extended Bolus, sometimes I just do a you know, corrective dose before I think I need the corrective dose. Sometimes I just Bolus a lot more upfront. Now this morning, things have been going pretty

Scott Benner 34:14
well. Right. Um, what did you What do you eat every morning?

Mar 34:18
So I have a piece of bread that I make also thank you to your podcast. Yeah, I mean, I like to bake anyway. And I thought, Well, why am I buying bread when I could just make bread? So I have a piece of bread that I make. I had eggs, coffee, and I usually put either some Greek cheese on the bread or some goat cheese just a little bit. So I eat that same breakfast every single day. Do you need I do fine. And sometimes I don't.

Scott Benner 34:43
Do you need insulin for coffee when you're having it by itself? Yes. Okay. What is sometimes you do fine and sometimes you don't let's put numbers on that when you don't. Where's the spike go?

Mar 34:54
So, I think Monday I went up to like 240 Okay,

Scott Benner 35:00
And then but there are times where the exact same Bolus it doesn't happen.

Mar 35:06
Well, that's the thing. I'm not sure I'm boasting the exact same thing every time. How come? Because well, because like, okay, it didn't work Monday. So I thought, Well, that wasn't the right Bolus, because I do agree with what you say like if you're if your number is going up, you either didn't time it or you didn't use enough. I do agree that's true. So I thought, well, I didn't use enough, so then I'll use more, or I'll spread it out. Or like I said, I'll just do a preemptive corrective dose.

Scott Benner 35:34
Do you ever pay attention to where your site is? Or if it's an old or new site on your pump? In relation to what the success or not that you're having in the morning? No, I would think about that. Like, am I like, is today a good day? Is that the second day of the pump? Or the first day of the pump?

Mar 35:56
Should you know today? Let's see I just changed my pump. Last evening when I get home.

Scott Benner 36:03
This is so this is a pump that's 12 hours old. And it's it's doing well for your for your breakfast. I'd be super interested to see what happens. This is Thursday, Saturday morning, when this pump is on its last legs. Is it? Is it different? I would also look where do you where your pod, arms belly thighs.

Mar 36:22
It's on my arm right now. But I typically where I'm on my legs.

Scott Benner 36:25
Okay, our legs? Do legs need more insulin than arms? Or vice versa? Well, that's a good question. I don't know, this is what I would be looking at. Because I mean, if you have if you're doing the same exact meal, and I mean, a couple of eggs, a little bit of goat cheese bread you made yourself which we know. I mean, if you're using my recipe doesn't have very much sugar in it at all, honestly. Right? Yeah. And so I Yeah, and there's no high fructose corn syrup in it, etc. Right? So it shouldn't be hitting you all that hard. And if the Bolus is working sometimes and not others, I'd look outside of the of the carbs and the insulin for something else. The first thing I think of is pump placement or age of the infusion set. Okay, those are my thoughts. Okay. If that works, send me an email. I will. I want to know, okay. Okay. So, so you treat you know, so that they they're still calling you Lada like, is that your diagnosis?

Mar 37:25
Yeah, it says Lata and then parenthetically says type one. Okay. So, you know, I don't know I asked my endocrinologist about that. And she said, you know, Lada, she said, there's people that call it type 1.5. They call it Lada. She said, it's basically type one she said your pancreas just takes longer to shut off she said kids that have this their pancreas is done it you know, just shuts off there. You know, instantly, you know, need insulin. She said you have probably been experiencing this for years. You know, she said it just takes a long, longer time.

Scott Benner 37:58
Also, in fairness, not that you just not that you misspoke, but there are adults who get type one and their pancreas just gives up the way you express. Yeah, yeah. Excuse me. Okay, so are you noticing that like, as time goes on, do things need more insulin very slowly?

Mar 38:18
Oh, yeah. I don't honestly know how to answer that.

Scott Benner 38:24
Okay. That's okay. But it's just yeah.

Mar 38:29
I just don't know I I just don't know the answer is I need more than I did five years ago.

Scott Benner 38:35
Yeah. In your heart, the way you treat every day and what you see other people doing You You You act as if you have type one diabetes, and that there's no real thought about it. Otherwise, I imagine.

Mar 38:45
No, no, I mean, I just Yeah, I yeah, I would agree

Scott Benner 38:52
with that. Okay. All right. Yeah, I mean, if you don't agree with it, then that's just me saying here's what I think Mark Thanks, Scott. I don't think that too bad move on

I'm sorry me myself. What? I just I imagining a scenario where I just tell people what they think and somehow podcast today builds on I'm going to tell him how he feels about Bri. But I'll tell you that would not be a lot of fun to listen to. What made you want to come on the podcast?

Mar 39:28
Well, I just found your podcast and was suddenly like wow, these are you know, real people who are crazy because in the in the like real people who are crazy that have the same thing that I have or similar to what I have, I guess if not is not exactly type one.

Scott Benner 39:47
Before we get into that Marla do you find a lot of real people are crazy.

Mar 39:51
I mean, if you look in the online community, you can find some people that are not helpful. Maybe crazy is the wrong word but not helpful at all. All, or extreme or judgmental or, you know, admonishing. And so when I started listening to the podcast, I don't remember how I found it. But I thought, yeah, okay, you know, I'll see what they have to say. And I just was thinking, wow, this, these things, these, this advice could actually work. And these people are doing this and having success. And because I feel like I am largely reactive, like, I check my I hear you say you don't even check your daughter's number, you just listen for the alarms, and I'm constantly looking at my phone, constantly looking at it to see what the number is. And when it's not what I think it should be, it's because I've done something wrong. Now, I know that that's not true, but that is what I feel and think. So you know, that I'm reacting constantly to this high number. And I feel like I could do better to to put myself in a more proactive, you know, response, instead of just always reacting to things I

Scott Benner 41:05
understand. It's a large part of, I mean, if you, you know, you hear me on the podcast, obviously, I follow the conversations, when I'm talking to people, I don't just break in with thoughts that are, you know, out of left field, but a big part of how I think about diabetes is about acting first. It's about it's about attacking it, and then seeing what happens next. And knowing I made what happened happen. Like, I think once you wait for diabetes to happen, and you're responding, you're always behind, you're always chasing, and therefore, you get up and down numbers, and you never feel confident about anything you're doing. Because then there's always an aspect of what's happening that is unknown to you.

Mar 41:48
That's exactly right. Yeah, that's exactly how I feel like I, I react and try to, you know, I've learned a lot from the pockets, like don't get over 200, because it's much more difficult to come back down to is much more insulin. You know, when I see 160, I start, you know, trying to correct, I try to be very good about Pre-Bolus, seeing, you know, not being afraid to use more insulin and stuff. But I still feel like, I'm not doing something I should be doing to keep my keep my line a little more level and not be so reactive. And I often don't know what's happening.

Scott Benner 42:26
It's interesting that you that you bring this up today, because I just yesterday interviewed a woman who's the mother of a nine year old, actually, your episodes will come out really close together. So anyway, it probably just came out. And she had been on the podcast previously. She came on in 2017 when the podcast was like two years old, and was on an episode called the normal floor. And then she came back just to sort of do an update and talk some more. And she was still talking about some of the struggles she has one of them was that she has trouble Pre-Bolus at school because she's worried the kid's gonna get low. But here's what happens every day. She doesn't Pre-Bolus Enough. The kids blood sugar jumps up, the insulin becomes unbalanced with the foods that the food is the digestive system, and he crashes low. And I said so. You don't Pre-Bolus Because you don't want him to be low. And she said, Yeah. And I said, Well, what happens when you don't Pre-Bolus later and she goes, he gets a low? And I thought do I need to keep talking right now? You know, like, I'll let the silence work for me here. And she goes, Oh, yeah, or something. And I was like it just it doesn't matter. Big picture, you're using insulin, you're probably going to have lows sometimes. I prefer to have a low you caused than a low that happened to me. And I really ironically, as we're talking about it, Arden, you would know this, but in the first 20 minutes of this episode, I helped Arden fix a low that she's having at school. Oh, well. And so she it looks to me like what happened? It's just a crazy little thing. But it looks to me like what happened was she Bolus accurately for for a food that she had. Problem is this is the second day of her placebo of her birth control pill. And she doesn't think about it like that as much but you start getting, you know, there's a shift. So anyway, the Bolus was a little heavy. And she's gets this diagonal down arrow that's just not stopping she sees at around 65 and tries to hit it with some candy. Why candy and not juice. While I find out later. It's because she doesn't have a juice honor. So the candy doesn't work as quickly as she's expecting because she usually treats with juice and she would she expected a quicker response the way she gets from the juice. So she gets low enough to 50 where I text her and go, Hey, you're paying attention to this right? And she goes yay, I know. And I'm like okay, so I said what you do? She told me about the candy. And I said, you know your tests she tested the CGM was accurate. I said, I really think I would drink half a juice here. Five minutes later I get a text it says too late, too late means Arden doesn't like to have a half juice box on her desk. So she banged the hold us down. So I just texted her and said Bolus suggested, which is and by the way your Dexcom warmup period is over. Is that

Mar 45:30
That's my my alarm at 1310.

Scott Benner 45:33
I was that's the noise you used for that alarm? Yeah. Yeah. So you know, anyway, Arden's on loop, I told her to put in carbs for the candy, not for all of the juice, and we let it catch her low. If she was home, I would have just told her to Bolus like I actually would have Bolus did a 50 blood sugar after she drank the juice. But since she wasn't a way, I just told her to hold off. Now the insulin is going in. She shooting up, it'll stop around 150 and come back down again. Okay, if that all makes sense. But anyway, if if we would have Bolus for the candy and maybe a half of the juice, as her blood sugar was 58 She wouldn't be shooting off the way she is right now. You know, so and that's my point of telling the story, which is you have to be ahead of it. Right? You just Oh, and and I'm not disappointed that she had a low because she was appropriately aggressive for what she ate. And I would rather her have a low that she made happen than a low that just happens to her. Right? Is my reason for bringing it up. Yeah, that's all. I mean, is that a mindset thing for you? Why do you not do it? Because it sounds like you know,

Mar 46:53
I think I don't mind. Like during the day, all day long, I'm fine with you know, using much more insulin if I need to. I guess I just with breakfast. I'm struggling with how much and I also I well, I should mention this too. I don't want to have to eat extra calories if I don't need them. Because I'm always watching how much I'm eating. Yeah, I

Scott Benner 47:18
don't want you to do that either. But could we? We now I'm in this with you. Could we start upping your basil early morning before you get up?

Mar 47:30
Yeah, I just made adjustments to my basil because I thought about that yesterday. Because, you know, I knew I was coming on as today. And I thought, you know, what are the reasons that you can't get this breakfast thing figured out? And I thought, well, maybe I need to adjust my Basal which I don't wait for my endo appointment to make changes to my pump settings. And my endo is fine with that she you know, she'll look at them. And only one time did she asked me to change something that she wasn't comfortable with. And it was because I had an overnight target of 90 and she wanted it higher. And I you know, she's she's so good and everything I said, Okay, how about if I make it 100? And she's like, Yeah, that's fine. So I did that. But the rest of my settings, you know, she she's okay with and I just changed it Sunday to increase my basil in the morning, because I did think well, maybe that's the problem. Maybe? Maybe it has nothing to do with what I'm eating. I'm not getting enough insulin, anyway.

Scott Benner 48:25
Yeah, no, I mean, that will be my first consideration. Do you go up in the morning if you don't eat? Well, I always eat. That's right. You said earlier, you're eating right.

Mar 48:36
I always, I always eat breakfast. That's my favorite meal of the day.

Scott Benner 48:40
Would you be willing on Saturday morning to have breakfast for lunch? Just to see what happens to your blood sugar if you don't eat in the morning? Oh, yeah, for sure. Give it a whirl. See what happens? Because maybe you're busy thinking? Well, first of all. First of all, pomp sight thing is worth thinking about. But if you're drifting up anyway, at that time of day, and you're just thinking about it as the food. Well, then that could be part of it, too. Yeah, you know,

Mar 49:10
so it could be because maybe that's not the issue,

Scott Benner 49:12
right? Maybe, well, maybe there's two things going on, and you're only looking at one of them. Yeah, right. So that's a possibility, too. You just need somebody to talk it through with like, that's the problem is that you, you get in your own head and it's hard to it's hard to flush the whole thing out by yourself. Sometimes.

Mar 49:31
It is 100% Yeah, and that's another reason like the podcast was you know, such a great fine because I don't have anyone to flesh it out with like, it's just me and I don't know anyone in real life that has this. And you know, again, the social media thing, you know, you can find good people, I found some really helpful people, but I also found some that were the complete opposite. And so after a while I quit asking questions.

Scott Benner 49:58
Yeah, it's tough because you just don't know What you're gonna get? Have you tried my private Facebook group? No, it's really good. There's like 24,000 people in there. And it's the it's the thing you hope Facebook would be?

Mar 50:10
Oh, I will. Yeah. How do I find that Juicebox Podcast

Scott Benner 50:13
type one diabetes. All right. And it's a private group, you'll have to answer a couple of questions to get in. That's how you'll know you're not just on the public page. Okay. Yeah, it's cool. Yeah. It's, it's just people who won't listen. It's still the internet, right? So it's people who listen to the podcast, mostly. But there are also a fair number of people in there who have just heard that the people in that Facebook group have a lot of success. So they they go there. It's interesting that every once in a while someone will just pop on and go, I feel so silly asking this. What is this podcast everyone's talking about? That made me mental in the beginning more, but I've let go of it. And I just know now that the Facebook page has sort of become its own thing. Yeah. And hopefully some people find their way from it to the podcast. But I mean, honestly, if the Facebook page helps them with their problem, then, you know, I think that's great. My honest opinion is you should listen to the podcast every day. And I know that's me sounding like I want you to listen to the podcast, but it keeps you in it. Yeah, like, think about it, you only really started wondering about why your breakfast isn't going the way you want. Because you were coming on a podcast to talk about diabetes. So you wanted to have some thoughts about it. Right? But why didn't you think about it six months ago? You know what I mean? And the answer is because you're living and you're alive, and it's going okay, enough. And when things start bleeding away from center, it happens so slowly, you don't notice your A once he goes, you know, go 66163 You're like, ah, six, three is fine, six, four, that's only one more than six, three, everything's fine. All of a sudden, it's six, eight, and you're like six, eight, still, in the sixes, you can you don't I mean, like you can rationalize almost anything. And that is a, that is a key building block of how human beings stay alive. By adjusting sub, like unconsciously to things. Just just so happens in this one area, you need to stop and focus sometimes and say to yourself, there's no reason why I'm six, seven now and I used to be six, two, I must be doing something different. And just and just not realizing it. i There's a great episode because way back years and years ago, where a mom has this realization while she's talking, where she's like, Oh, I've just become okay with 200. And she's like, I now think of 200 is not bad. And now I get what I expect. I expect 200 I get 200 I said yeah, move, move the alarms down, like just like you were talking about, expect 180. And then once you start getting 180, then try to expect 160. And then you'll see that most of the time you're under 160. And, you know, it's no big. I mean, it for me, I expect Arden to be between 70 and 120. That's all and most of the times that's what we get.

Mar 53:07
Yeah, see, that's that's where I want to be. I want to be in that range all the time. I mean, I don't want to have these highs when I eat something out. I mean, if I eat something, you know, sugar, then I know. But I hear you even talk about like our needs stuff like that. Yeah, and stays pretty steady.

Scott Benner 53:25
Yeah, she does. Well, yeah, I mean, Bolus for the right one. Yeah.

Mar 53:30
I think the most frustrating thing for me is like I haven't figured out when I'm not eating stuff like that when I'm just eating normal foods, and I still can't manage it. I don't always know why that's

Scott Benner 53:42
happening. Yeah, I I cut my teeth on bolusing for cereal. Like sugary box. Terrible for you not really food cereal. Like when I once I figured out a bowl of cereal. It just opens your eyes. It's like, it's like seeing the other side of the matrix. You're like, Oh, okay. And then you're just Okay, after that thing's news. The reference is so old now. I can't use it anymore. But, but I see diabetes, the way Neo saw everything once the bullet slowed down. Yeah, I just kind of look up and I go, Okay, well, let's move this over here and put this here and that'll do this and done. You know, but it takes it takes time and experience and a desire to. I mean, just a desire to fight through how hard it is to figure it out. Yeah, you don't I mean, it's just and you're we haven't mentioned it yet. But do you live alone? I do. So is that worrisome at night? No, no, you're okay. All right. Yeah, I'm fine. Yeah. You're like, Listen, my kidneys my thyroid, ra, whatever the hell that other thing is that I mentioned, you know, like,

Mar 54:51
No, I'm yeah, I'm never not living. I can tell you right now unless I mentally not, you know able to take care of Myself, I will not let. I'm just so used to living by myself.

Scott Benner 55:04
I was gonna ask if you wanted to be with somebody else and you're like, Nancy, I'm good like this. Thanks. No. Good. I was gonna ask you about like dating. I don't know if you're doing that or not. But now I just don't know how it is to bring another person into into this world and try to explain your health issues to them.

Mar 55:25
Yeah, I don't know. I most of the people that I know in real life don't know I have kidney disease. My brother's the only one who knows and then my best friend, but the rest of my family or they don't know, I couldn't think of a good reason to share that. Because it's only going to cause worry, and there's nothing I can do. I mean, I watch my diet I avoid you know, things that are high in sodium. I don't eat foods that come from cans or boxes or, or frozen, you know, things that have a lot of sodium. You know, but other than that, there's nothing, you know,

Scott Benner 56:02
get a t shirt made that said I had coffee colored P asked. asked me if you'd like to know more. But um, I mean, I would love to see who you'd meet. If that was your people. Like, I want to know about the coffee colored paper?

Mar 56:16
Yeah. coffee colored. Yeah. So weird. But yeah,

Scott Benner 56:19
it is. It's honestly, if it wasn't a morbid thing around like kidney disease. It could honestly be the episode title. I was fascinated by that description. I must. must have scared the hell out of you.

Mar 56:33
I mean, it didn't at the time because I knew I had been sick. And I was like I said, I had the flu. I was vomiting and diarrhea. I thought, Well, I'm just I'm just super dehydrated.

Scott Benner 56:42
Yeah. Does everybody remember the first time their poop came out? Green? You're like a kid. You're like, running through the house? That's like, everyone else.

Mar 56:54
I know. Right? Yeah. And I only mentioned it to her in passing. I did not think it was a big deal. I mean, yeah. So she, you know, thankfully,

Scott Benner 57:04
you've lucked into a couple of diagnosis is actually even with the calcium test for the Hashimotos. You know, when they palpated, your your thyroid back then did you touch it to

Mar 57:17
know I don't think I don't think I did. But they I didn't have visible tumors.

Scott Benner 57:25
like nothing's being out. But yeah, but yeah, when they feel that they can, I mean, they're doctors, they know where it is. I'm poking at my throat now as if I know where my thoughts I don't exactly know. And but it's it's interesting because I, during COVID. I watched somebody do that to my son over zoom. Oh, and like, had him get real close to the camera, like pull on his throat and push in places and swallow and stuff like that was really interesting. Oh, wow, that isn't just not fun. But interesting. Yeah. Anyway. All right. Well, we're coming up on an hour. We're not done yet. But I want to make sure that we're getting to everything that you wanted to talk about, because you wrote a fairly extensive note that I have mostly ignored while we were talking. So I'm wondering, I'm wondering how we're doing.

Mar 58:14
Now we're fine. I tend to be a little too wordy when I when I write or even when I talk. So I reread that last week I was cash. One, I mean, why don't you just sit down and like write a three page letter to this guy. It was so long,

Scott Benner 58:31
I ended up being people's therapist, sometimes.

Mar 58:34
I think, I think when I when I reached out to you, you know, I just was so like, happy to have this resource, honestly, that I just felt, you know, so great about, you know, tapping into this information. And I thought, well, I just have to tell this guy how great this is. And then it made me want to tell you, you know why I was listening and what was going on?

Scott Benner 58:55
I'm glad. Would you consider yourself a person who listens to podcasts outside of diabetes.

Mar 59:01
Only just recently, like maybe a year ago. So what are these podcasts things that people are listening to? And it was not until the pandemic and I started working from home because I work from home four days a week that I started listening to podcasts while I work. Yeah. And prior to that, yeah, I didn't listen to them at all. And now I only listened

Scott Benner 59:26
to a few. Okay, yeah, I gotta talk to my wife about that, because she watches bad television while she's working. And I'm like, You should upgrade what you're she's like, I like how mindless it is. I'm like, I don't I don't know how she cares if a 21 year old kid is on a singing show. But my wife still really cares about it. So at least likes it his background. And so, anyway. Well, yeah, because I mean, 55 is, I mean, you're on the other side of what I you know, people expect for podcast listeners. Yeah. How did you so how did you find Did you Find. I'm trying to figure out how you found this.

Mar 1:00:03
I'm sure it was in one of the social media groups that I just remember thinking that I kept hearing the term that Juicebox Podcast. And I think I probably initially thought that it was for kids. And then I thought, well, I'll listen to it and see what it is. And I realized right away that it's for anybody who's dealing with insulin and diabetes. And I think you're right, I don't fit into that group that usually listens to podcasts. But if I have the TV on while I'm working, I can't pay attention to work. If I have the podcast playing in the background, I can somehow do both depending on the podcast, there are times when I have to rewind because I'm focused on what I'm working on. Or I you know, if I'm working on something, really, that really requires my focus, I'll shut it off. But, um, but yeah, I mean, it's just, you know, I listen all day. I'm home by myself. I listen all day while I'm working.

Scott Benner 1:01:04
That's lovely. Are you going to listen to this episode?

Mar 1:01:08
I don't know. Just because I'm sure that I will not like the way that I sound. And I will think, oh, cocky sounded so don't

Scott Benner 1:01:17
see, I'm always fascinated by that. Because a I don't sound the way I sound. Like when if I took off this head, these headphones. Because right now I'm hearing my voice in my own ears. And I do that so that you and I are the same level in the conversation. Like like his I'm hearing our conversation in my head. Which is, which is good. You kind of have to forget that the microphones here. But without this mic without these earphones. I don't sound the way you're hearing me right now. Exactly. Like I'm not like, I don't have like a squeaky Mouse voice. And I'm like, you know, masking it or something like that. But, you know, I don't like sound exactly like this. And I always think like, what did people like? What's their expectation of how they sound? Yeah, you know what I mean? And yeah, and then the other part is, you like the podcast, right? I do. You okay, do you? Generally speaking? You don't think there's like a like a real clunker in there? Right? Yeah. You don't get to one where you're like, Oh, God, this is terrible. Why am I listening to this? I mean, every once in a while, not your beer, your cup of tea, maybe or something? But you know what I mean?

Mar 1:02:22
Yeah, no, I agree. I listened to I'm trying to see what I was listening to it until our call, can't see what episode I want. Because I went back to the very first 000. And I've been working through them. That is

Scott Benner 1:02:34
what everyone should do, by the way. And, and because that's good for me. Just I mean, it might be it might be good for you. Actually, that's not true. You should because by episode four, I am already hitting my stride talking about diabetes. Like I'm, I'm going over things. And I mean, I think episode four episode 11 are really like pivotal to understanding how I think about all this. But but the My point was, is that I've never recorded an episode and just thought this is terrible. I'm not letting anybody hear it. So your episodes going to do something for someone else. Just like their episodes, or have done for you.

Mar 1:03:13
Yeah, hopefully. Yeah. Because I, I have gotten something out of all of them. I'm just looking at on episode 207. Look at your which is from February 19. So I'm getting caught up. But oh, this

Scott Benner 1:03:25
is super interesting. You know, a 210. The Pro Tip series starts you don't even know about that? Probably?

Mar 1:03:32
No, I've been listening in order. So no, I mean, and I do listen, like I said, if I'm focused on something that I'm working on, I'll back the podcast up because I didn't hear you know, what was actually being said it was just background noise. So I mean, it's taking me a while to get through them. But I do think that there's valuable information in each one, even if it doesn't pertain to me directly. So yeah, I haven't.

Scott Benner 1:03:54
Oh, Marla, you're doing pro tip. You're doing mid sixes. And you haven't been to the pro tips or the or the defining diabetes stuff or anything. Oh, yeah, you're a once he's gonna go into the fives.

Mar 1:04:06
Oh, I hope so. That's really what I want. Because honestly, Scott, I have all these other issues. That I feel like at some point, those things are going to come backing and I don't want to have major diabetes on top of every Sue's complications and then have those things come and have you know, whatever. How many ever years I have on this earth left? Hopefully a lot. I don't want that time to be you know, awful.

Scott Benner 1:04:36
Marla. I'm not even kidding. If you're definitely going to keep listening. When we're done here. We're going to talk about you booking to be back on like a year from now. Okay, because I'm sure I'd be super interested to see what happened to you after you got through that stuff.

Mar 1:04:55
Yeah, no, I definitely will keep listening. I mean, I'm lucky my job lets me work from home. I go to care. post like one day a week, the other four days I'm listening to the podcast. I mean, it's sometimes I'll take a break and listen to Smartlist because there's so funny. But the Jason

Scott Benner 1:05:09
Bateman one. Yes. Yeah, I've never heard it. But it's Bateman. Sudeikis and somebody else when Sean Hayes, I love that seems like something I should be listening to actually,

Mar 1:05:19
they're very funny. Yeah. And they have interesting guests. But most of the time, I'm listening. And then there's another one called spooked that I like because I like scary stories. But those are the three podcasts that I listened to yours. And those two. No,

Scott Benner 1:05:31
that's good company. I'll take it. Yeah. Thank you. Really, really cool. All right. Well, is there anything else that we should be talking about? Are we got?

Mar 1:05:40
Oh, no, I think I think we're good. I really appreciate you taking time to talk with me.

Scott Benner 1:05:45
No, I had a great time. This was was really interesting for me as well. And I appreciate you being comfortable laying out all the things that are happening so people can get a full picture. Sure. Yeah, that's really wonderful. Hold on one second for me. Okay, sounds good.

I want to thank Marla for coming on the show and let you know that I'm gonna have her back. I could wait about a year and then invite her back on I want to hear more from her. Thanks very much Mark. Also want to thank touched by type one, and remind you to go to touched by type one.org and find them on Instagram and Facebook. And of course, our new sponsor cozy Earth cozy earth.com. Then once you get everything in your cart, you know what you want to buy. Don't forget to check out to use my exclusive offer. Put in that juice box code, save 35% off and by the way that 35% off is sitewide when you use juice box, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

If you're looking for community, please take a look at the Juicebox Podcast Facebook page. It's an absolutely private group has over 33,000 people in it. If you're using insulin, there's no better place to be Juicebox Podcast type one diabetes on Facebook. If you have type two or a lot or something like that, get in there. Big Family

#836 Best of Juicebox: Explaining Type 1

Episode 371, Diabetes Pro Tip: Explaining Type 1 was first published on Aug 24, 2020.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 836 of the Juicebox Podcast.

Today, we went back to the listeners and ask them for another episode for the best of series. And today I'm proud to present to you Episode 371, which you may have first heard on August 24 2023 71, is part of the Pro Tip series. And it's called diabetes pro tip explaining type one. This episode is going to help you to explain type one diabetes to friends, coaches, employers, and much more. And today I'm dedicating it to a young man who I was speaking to yesterday in the private Facebook group. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And in a second, you're going to hear me say that back in 2020, because this episode is presented exactly as it was. So the musical Come on, you'll get the introduction, and then the episode. Now if you're a person with type one diabetes, or the caregiver of someone with type one, please do consider going to T one D exchange.org. Forward slash juicebox. Join the registry take the survey takes 10 minutes. You can do it from wherever you're sitting right now. If you're walking, I mean I'd sit down first. I don't like you're looking at your phone while you're walking, you know, but you're gonna move diabetes research forward with simple answers to simple questions about type one T one D exchange.org, forward slash juicebox. There are of course, no new ads on this episode. But if you'd like to advertise the Juicebox Podcast, you certainly could buy one and put it on the next best of. But let me just do this for listeners. Right now. We have a new advertiser coming next week, I'm going to give you a little jumpstart on it. So for those of you who are already aware of cozy Earth and don't need to be told about it and filled in. Just maybe you need some sheets or pajamas or towels. Whatever you get from cozy Earth usually, here's the thing. Now when you buy from cozy Earth, you're going to use my code juicebox and save 35% on everything on the site. 35% And now I'm very proud to present you episode 371 diabetes pro tip explaining type one. Hello, everyone. Welcome to Episode 371 of the Juicebox Podcast. Today's show is a diabetes pro tip episode, mostly sort of, you'll see what I mean in one second.

The Pro Tip series that exists inside of the Juicebox Podcast is mainly about management of type one diabetes. There's also some informative stuff like what can you do when you go to the emergency room to make your experience easier. And today, I'm going to be filling a need that's been presented to me by the listeners. So I don't know if this episode is for them to get ideas from or for them to share, or maybe both. But in this episode of The Juicebox Podcast, I along with Jenny Smith, Jenny of course has had type one diabetes for 32 years. She's a certified diabetes educator and an all around amazing person. And me Scott, who's you know, just the host of the podcast and the parent of a child with type one diabetes. So this episode is for people who need to understand type one diabetes more, or for those of you with type one who struggled to talk to those people about what type one diabetes is. See if you're like the school nurse or a teacher, maybe my boss, friend, and neighbor, somebody wants to have my kid over for a sleepover. This episode is for you to try to understand better what type one diabetes is and what your role in it can be. And if you're a person living with type one or the parent of someone living with type one, and you're struggling for how to talk to people about it, this will be beneficial for you as well. This episode of the podcast does not have any ads. But I do want to let you know that the Juicebox Podcast is proudly sponsored by Dexcom, makers of the G six continuous glucose monitor and Omni pod. The world's only to Bolus insulin pump. That greatest blood glucose meter in the world of my opinion that Contour Next One blood glucose meter. We're also sponsored by GE voc glucagon, Lily's chocolates touched by type one and the T one D exchange. There are links to all of the sponsors in the shownotes have your podcast player and at juicebox podcast.com. When you support the sponsors, you're supporting the show, but like I said, there's no ads in this episode. Because I don't know you're going to give this what to your kids, you know, baseball coach, and what's he going to do by an insulin pump. Having said that dexcom.com forward slash juice box my Omni pod.com forward slash juice box, contour next.com forward slash juice box touched by type one.org G voc glucagon.com forward slash juicebox. And if you'd like to get involved in some amazing type one diabetes research, T one D exchange.org, forward slash juicebox. Last thing before we start, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Or becoming bold with insulin. and a huge welcome to those of you who don't usually listen to a type one diabetes podcast, those of you who care enough to try to learn a little more about type one so that you can be a better support system for the people you know, and love living with type one diabetes, this means a lot to them. I'm sure they're really, really excited that you that you took the time. So I hope we can make this informative and fun for you. I think we have, let's get started. I want to jump right into this because this has been interesting since I brought this up to you the other day, I I sat down myself and I thought who in my time have I spent? Have I had to describe diabetes to you know, when I started kind of making a list. And then I just a lot of people, a lot of people and then I went online and I said you know into the private Facebook group for the podcast. And I said hey, you guys, Jenny and I are going to do this thing. Who do you wish, you know, we could talk to and here's how the list came back. Grandparents, teachers, parents, babysitters, somebody who might have my kid for a sleepover, my child's friend's parents, a coach of a team, spouses or significant others, co parents, roommates, extended family, school nurse, coworkers, bosses, bus drivers, and, and and family of adults with type one. So people who are diagnosed as adults who then are around other adults who never get end up getting it. And then very much at the end of the list. Someone said, Oh, I wish you could explain to chaperones. And I started thinking everyone should have just answered with the same word, it should have said, people, because this is just, this is like everything else around diabetes like you like Oh, explain it specifically to a coach. So what I'm going to tell you is I think we're going to have a conversation, that whether you're one of the people I listed, or just a person who knows somebody with type one diabetes, when you're done, I'd like you to understand the basics of type one better, maybe a little bit of terminology. So things are happening, and maybe more so the mind of the person with type one, what's happening to them and how you could be supportive of them. I think that's the goal here like not to speak to like, like there was there in the beginning, I thought, oh, we'll do a couple of minutes talking to grandparents, and then a few minutes high. And I'm like, No, it's all the same thing. Really. Right? Yeah,

Jennifer Smith, CDE 8:23
it is. And it's really funny, you bring this topic up, because it's actually we do a monthly newsletter and my my article last month was sharing your diabetes. Okay. What it was kind of along this same line it was, how do you talk to other people about your diabetes and give them the baseline of what you need them to really know. Without like a textbook that's like 4000 pages long, overwhelming. It's overwhelming. And I know some of the big points were one set a time to discuss specifically diabetes, with these people, or this person or this culture, whoever it is, I like your term, just people in general, right? Pick the person. You need them to know this, this and this, these are the important facts. Because it's a lot easier if you've set a time for it, than if you go to the coach at the end of practice. And you're like, Hey, can you just take five minutes with me I really want to talk to about you know, Billy's like type one diabetes, and the coaches got like, you know, soccer balls over his trying to get home

Scott Benner 9:38
to go home and get yelled at. There's a lot going on in my life right now. Right? Right. So

Jennifer Smith, CDE 9:43
setting up a time and again, the timeline of what are the important things you want these people to know. Like you said the basics.

Scott Benner 9:51
Let me add this to that. The other things that people came back in their in their responses very overwhelmingly was I want this episode. be something I can text to somebody like a link and say, Please, can you listen to this and understand diabetes, because many of the people who came in to speak said, Look, I'm not very good at describing it like I can take care of myself. But when I start, there was an overwhelming feeling of when I start to explain it to somebody else, I either get frazzled or too detailed, you and Jenny do it. And I'm like, alright, well, we'll do it. So Jenny's after you listen to this episode, and you decide you really want to help a person you love with type one diabetes, or someone who's in your class, or because there was one very specific woman who said, I'm a college professor, I wish I could explain it to my students. Better, right. And so whoever you are, in this scenario, here's what I can promise you, Jenny, and I will not make this boring. And we will not make it overly, like taxing, it won't be so technical, you won't understand. And it should be a good runway up to you having that conversation that we just spoke about with this person in your life who has type one diabetes. So that's my overarching goal, Jenny, don't mess it up. Okay. I'm talking to myself, I don't want to mess it up. Do we start with? Well, we usually talk about diabetes in such a specific way. But why don't we start with just a really simple description of type one diabetes? You want to go?

Jennifer Smith, CDE 11:19
Yeah, absolutely. I mean, type one diabetes is the body's inability to create insulin, or to put it out into the body. And so without it, your blood sugar gets too high. So type one diabetes is a deficiency of insulin, it's specifically an autoimmune disorder, which means the person did nothing to cause type one diabetes. It's not because they sat and ate hohos for, you know, three years or whatever. So I think that's a, that's an important one to put out there. And just the simple explanation, because there is a lot of misunderstanding around just the term diabetes. Sure.

Scott Benner 12:00
So yeah, and it is a listen, it's a genetic issue, right. It's an auto immune disease, you know, you can use an example, my daughter was two years old, when she was diagnosed, she weighed 19 pounds, and I, you know, fed her the same stuff, all of us feed our kids. And, and her body just was like, you know, got confused one day. I mean, that's even that right? For these people listening, I don't know exactly what triggered my daughter's type one onset, what I can tell you is that testing can prove that you have markers, that that make you more likely to get diabetes. I don't know if my daughter had them, obviously, because no one ever checked her. But she got sick. And you know, it's always been my belief that her immune system got confused and instead of killing her virus went and killed her pancreas for the lack of a better term. And I want people to understand, too, that the advent of insulin is still fairly new 1921 one, right. So, for context, if my daughter's pancreas would have crapped out in 1919, she would have died in a couple of weeks, right? That's okay. The insulin is the only thing keeping people with type one diabetes alive. Otherwise, the first time your blood sugar starts heading up, it will just keep going up and never stop. That's right, right. And you'll slip into a coma and die. Okay, I told you this sounds like it'd be too technical. So so people are getting this insulin in, in a ton of different ways. And so I think that would be important. What are the different ways people get insulin,

Jennifer Smith, CDE 13:38
initially, and some people even long term after diagnosis continue to take injections. So the age old, you get a little like bottle or what we call a vial of insulin, they now come thankfully, and easily dispensing pens. And you dose it through the course of the day based on many factors. There's other ways such as an insulin pump, that you could take your insulin, kind of a fancy little pager size device that sort of drips it into the body through a tube or if you're using a tubeless one like Omni pod, then that would be another way to do it. So essentially, an injection or a pump, those are two ways to get in the body. Now there is one other way. I mean, if we wanted to be truthful about it, there's also an inhalable insulin called the Frezza. So, that's another way to use it.

Scott Benner 14:27
Most people inject insulin correct. And so inject like Jenny said, with a pen, which really is just a very fancy syringe, you might see someone do it with a syringe, you might see someone wearing a device on their body, or carrying a device that's connected to their body with a tube. There's different ways but in the end, you need to get that insulin under your skin, right. And this could happen for a number of reasons. It could happen because you're eating it could happen because your blood sugar just went up On its own, and you need to bring it back down. When it needs to happen, it needs to happen. And I want people to understand that asking a person with type one diabetes to go into the bathroom and extensively hide while they're injecting is not the right thing to do. So if please, there's, throughout this, I'm gonna tell you say things like, please don't ever say this, here's one of them, people around here might be uncomfortable with your diabetes, you can't do that to a person. If they're uncomfortable, they can leave, I need to give myself this insulin. So my blood sugar doesn't go up really high. And don't get me wrong, like not getting the insulin is not going to, you know, it's not going to kill you in the moment if your blood sugar is going higher, but here are a lot of things that could happen. They're thinking could become cloudy, right? Right, they could become agitated. So if you're a teacher, you don't want your kids blood sugar high, because they're gonna have trouble concentrating, thinking, they're not going to learn norming performing in all kinds of different ways. Same thing with sports, your blood sugar gets too high, you slow down your body has a difficult time, you know, I can see it my daughter's foot speed. If my daughter's blood sugar gets over a certain number high where it doesn't belong, I can literally see her slow down while she's running, she just can't go as fast. Right?

Jennifer Smith, CDE 16:22
It would be the same thing too. I think in like a corporate world type of setting where someone may feel like it wouldn't be acceptable in order to use their insulin or to respond to their pump, telling them to take the insulin or whatnot. And the same thing if they're being asked to present or to discuss something that's very, very important. They may not have the ability to do that in if their blood sugar is not in the right place. Yeah.

Scott Benner 16:49
So you need to give people the freedom to do what they need to do. If you want them to be themselves, or be able to do the thing you're asking them to do or hope that they can do, they need to be able to take their insulin and feel comfortable about it. It's difficult to have, this is a lifelong disease, like it's not going to, it's not going to get cured anytime soon, it's not going to, it's not going to go away, it's not going to one person said make sure people understand it doesn't just transform into type two diabetes, like it's a progression from one to two, right? Doesn't happen type two diabetes, completely different thing. Right. And so this person, it's hard, it's really difficult. Like I really want people to listen and think that every time you have a body function that puts pushes up your blood sugar. And so for people whose pancreas has worked fine, could be adrenaline, stress, pain, so many different things can make your blood sugar try to go up, when that happens to you out there. With a working pancreas, your pancreas just stops it, you don't even see it happen. Like if you were monitoring your blood sugar in real time, and you got some adrenaline like it might blip for a second, but it would come right back. A person who doesn't have that their blood sugar is going to shoot up and keep going or get too high and stay there. And then they need to put that insulin in into their body to bring it back down again. It's just it's 24 hours a day and to have somebody make it more difficult for you is is kind of terrible.

Jennifer Smith, CDE 18:21
And I think in terms of even bringing up the technology that is available, such as an insulin pump in terms of delivery. I know that there's also the misconception even in our day and age right now. Oh, you've got a pump. It takes care of it all. Yeah, that's a that's not true. 100% not true at all, there is so much that the person with diabetes has to interact with in order for that technology to do what it needs to do for them. So just because they're connected to these devices can be helpful, but it's not doing anything without their interaction with it. Yeah.

Scott Benner 19:01
And it's, it's easy for people who don't understand to make an assumption, like, Oh, they got the machine, that machine fixes it. Right, right, or something like that. And I want to be really clear for everyone listening, like, I'm not coming down on you. There are plenty of disease states that I don't understand in any meaningful way. But what that does is it stops me from you know, saying things about it that I don't understand. And like there's a ton of different things you might think, Oh, this is helpful. Like, if you find yourself with a parent of a child with type one and they've just been diagnosed and you think oh, this parents so smart, or look how well they're handling it. It's not right to say to them something to the effect of you know, well God gave the child with type one diabetes to the right person because you can really handle it. Right really think about that sentence but you know when you're in it because it happens to a lot of people. No one's lucky that their kids got diabetes. Nope, no adult feels lucky. And no one walks around going thank God I'm a head screwed on straight kind of person and I'm the one who got to die. punk was Jimmy up the street hot mess. And if he would have gotten it, it would have been way worse for him. It's bad for everybody. Okay, it's just that's a. So be careful how you speak to people. Right? I think I think about a person who's been on this podcast before who had a child who passed away. And I asked like, what's the right thing for someone to say to you? And she's like, there is no right thing for someone to say to you. And, you know, anything you do is just going to, it's not going to make anything better. Unless you offer, like sincere, simple support. Hey, if there's anything you need, I don't know what to do. But if you tell me, I'll do it for you, that works with this as well. You know,

Jennifer Smith, CDE 20:41
I think it's I think it's along the same line as offering up information about your neighbors, grandma, who is something Something happened because they had diabetes, I same thing. It's like, don't, don't offer up in terms of like a connecting point. You know, if Sure, if you've got a cousin who has type one, or you know, an uncle who had type one, and you have a little bit of understanding that might even further your discussion in terms of what the person with type one talking to you could put back into the conversation. But unless you've really lived with it, or you have taken care of somebody with type one, please don't? Yes. Tell them about your neighbors, uncles, friends,

Scott Benner 21:28
Jenny's politely saying, don't look at somebody go diabetes. Oh, where have I heard diabetes from my grandmother? Oh, you know what? Oh, my grandmother had diabetes. They cut her leg off? That's not a good thing to say to somebody don't do it. Yeah. Right. And it just yeah, don't, don't do that. Okay, so keep keep those thoughts inside. Because that's not helpful. And it might have nothing to do with the person you're talking about your grandmother's situation, very well could be a ton different than this person situation. And that's important to understand, too, is that in this day and age right now, I know this sounds kind of strange. This is the best time in the in the history of the world to be diagnosed with type one diabetes. So people have a much greater chance of staving off, what could be long term complications, and they have a much better chance of managing day to day in the moment in a way that won't impact their lives too badly. Now, I feel strange saying this because on one hand, what I'm telling you is, these people need some leniency, they need some understanding, they need a little space, because they're making decisions about how their bodies are, you know, working. And at the same time, I want to tell you that they can do anything. And so don't limit them. You know, and that's hard to do, too, because you might not feel like you're limiting them, you may feel like you're protecting them. And correct. They don't need that. And if they do need that, they'll ask they'll ask you for it. Yes.

Jennifer Smith, CDE 22:52
Right, exactly. Which is part of this, you know, the purpose of this is understanding if they're having a conversation with you about what you need to know, the reason is because a lot of times they want you to know what to do in case they need help. Right? Some understanding about this is diabetes, this is what you might see me carrying such as the devices, this is I might make some noise, my products might be bit tight, or whatever, you know, but in case of this, this and this, these are the things that you could do to help me and this is how to help me right?

Scott Benner 23:27
Because they may at some point need that help. Right and so you understanding like say you're a teacher, you understanding like signs of visible signs of hypoglycemia, okay, so low blood sugar like sugar. And I'm gonna read your list, which I don't I'm not a big list reader on the podcast, but this person could feel shaky, be nervous or anxious. They could be sweating, have chills, feel clammy, irritable, impatient, confused, their heartbeat might pick up, they could feel lightheaded or dizzy, voraciously, hungry, nauseous. Their skin sometimes can get pale. They'll look tired or could feel tired, they could end up feeling weak. Their vision could get blurred or impaired. My daughter talks about her mouth gets tingly and numb if her blood sugar gets too low headaches, trouble coordinating themselves clumsiness. This is coming right from the ADA A's website, the American diabetes Association's Association's website, in their sleep, they can have nightmares or cry in their sleep. And if their blood sugar gets too low, they can and if it gets low enough, we'll have a seizure. And so they'd like to know if they're not making sense when they're talking so that they can take in some carbohydrates of some kind to bring their blood sugar back up. And so you being a person around them like like a coach and you have to figure out the line right because these things while they can happen, may very well not happen so they Think of the other side of it. You know? You've got a little girl on your soccer team and she's running around and every three seconds you're jogging next to her. Becky, do you feel okay? Thank you dizzy, you don't feel clammy, do you? Hey, Becky, Becky, Becky, Becky, you're ruining Becky's life when you do that, okay? Don't Don't do that. But at the same time, you could look over once in a while and visually, just, you know,

Jennifer Smith, CDE 25:24
evaluate the performance, if you're the coach, you know, how your kids usually perform, or do things, you know, how they interact with their other teammates and whatnot. So yeah,

Scott Benner 25:34
it may not be at all, a strange thing to say, like, look, we have a two hour practice. Everyone sits down, you know, halfway through and drinks water. I'd really like it. If Becky tested her blood sugar, then, you know, because I don't maybe you don't feel comfortable as the coach, like you don't want to be on the hook for like, seeing if this kid's about to fall over or not. Right, I get that. So talk to the parents and say, Look, can we just coordinate a blood sugar check, you know, at some point, you know, for safety, and then make it normal, don't call attention to it don't like it's happening. And everyone doesn't have to stare and people are going to stare in the beginning. But you got to just give the kid the the space to let it happen because everyone will get used to it. And I guess that's what I want to bring up with. When my daughter was very little the first day of school. I'd go in and it's and I would give a talk like to the kids like five minutes on the literally the first day. Hi, this is Arden. Arden has type one diabetes, her pancreas doesn't make insulin, once in a while you're gonna see art and pull out this thing and give herself insulin within her controller for her pump. Hey, you know what Arden is just like the rest of you. She doesn't need, you know, she doesn't need you to check on her constantly. But if she looks like she says he or she's not making sense, you know, it'd be nice to tell your teacher, right? But it still didn't stop this one little girl from mothering her. And so she came home one day, and she's like, this kid will not leave me alone. Like, like, and she goes, it seems really sweet. But she won't stop, I need this kid to stop. Like, leave me alone. So that there's, there's a balance in there somewhere where you can be supportive, and understanding without being a burden to them or making them feel different or looked at. And this is very important. Like it really

Jennifer Smith, CDE 27:33
goes across the board and what you're saying to not just the little kid component, but the teacher or the coach, like you said like bugging, bugging, bugging, are you okay? Do you feel okay? Do you need some more juice, you know, that kind of thing. Or you even goes cross crosses over into spouses, significant others. You know, especially and I would expect that later in marriage or later in partnership, you've had enough visualization to not be like bugging, bugging, but in newer relationships, I think an upfront important talk when you know that it's going a little bit further than just let's go out and get a drink or whatever, right? I mean, it's important to bring up this is how you could help me. Don't bother me, though, you know, don't. Don't tell me not to have the potatoes with my dinner when we go out for dinner. Because Oh, my goodness, they have carbohydrates in and the potato

Scott Benner 28:25
makes your blood sugar go up. Thanks. That's what I want you thinking about right now? Unless the person says, Look, I have trouble saying no to potatoes. So if you could like if they want it, that's different, right? It's good. You remind me not to do exactly. When I see the french fries, if you could just go hey, you told me last time I shouldn't get french fries to bring it up. I don't think anything that we've said the last couple of minutes about kids and coaches and teachers doesn't specifically apply to adults in adult situations, either. It's correct. It's all exactly the same. That's why I didn't want to break these up into like, Okay, now, here's 10 minutes for your boss. If someone's working for you, and they have type one diabetes, they're going to have some needs. And the most important thing is to support them and not make them feel awkward or odd about it. And I'll tell you why. And as a person who I'm hoping cares about other people who have type one, you know, you could create a, an eating disorder by telling someone don't, don't use your insulin here, because what you're saying to them is don't eat right now. And then they start associating the awkwardness of giving themselves the insulin with eating, and then they'll stop eating. And I know that sounds like oh, that won't happen, that happens a lot, or hide

Jennifer Smith, CDE 29:37
their eating right, or in an effort to not like show others. I mean, there there is it's I mean, it's a whole nother broad topic in terms of diabetes, the eating disorders that are associated with diabetes. I mean, food is a huge part of diabetes management. It is and so it's not odd that it can become an issue, but it certainly is something that in terms of being supportive for another person who has diabetes, you don't want to push the envelope that way.

Scott Benner 30:06
And I know that people listening right now don't know us. And they are like, it's 2020. Like everybody seems super sensitive and social justice II and everything. We're not like that. Like, I'm not saying that at all, like, I, you can hear my terrible accent, I'm from the northeast, I'm good with like, Hey, get up, you'll be fine. I'm good with that I really am. But what I'm saying is, there's a real opportunity to mold a person in a positive way, or a negative way. And that goes for everybody I understand. But around this specifically, it does not take long to make someone feel different in a bad way. You know, and it'll stick with them, especially you teachers, who, you know, hear an alarm and are annoyed because you're trying to teach and it's alarming. Try to keep in mind that when that's happening, the student whose blood sugar is falling, who's now scared that they're going to pass out or die or something like that. They don't want this to be happening either. Correct. And you can't say, let me just finish this lesson. Or they need to address because we've talked about high blood sugars, but low blood sugars are more immediate, immediate, yes. Right. You can't just ignore because a blood sugar that's falling, could be falling quickly. And one of those issues could pop up out of nowhere. So if this kid's wearing a monitor that tells them live, Hey, your blood sugar is getting low, or they say I feel dizzy, I need to test or you know, like, you can't just say, Okay, well wait till after recess is over. Or as soon as I get done explaining this math problem, like they need to do it now. Which is another great reason to normalize it, let them take their meter out at their desk and check their blood sugar. It's not going to hurt anybody. And and they'll have an answer immediately about what to do next. But the five minutes you want them to wait could end up being much too much time for them. Yeah,

Jennifer Smith, CDE 31:58
yeah, absolutely. I mean, in terms of you know, even that also acknowledging what they're using to treat a low blood sugar is, is something that you also don't want to form any, like, wrong feelings about someone might use, you know, in terms of carbohydrate, it's just simple sugar that we really want to use to treat. So simple in terms of it could be juice, it could be Skittles, it could be something that we call glucose tablets, it could be honey, in there multiple things. And everybody seems to have a preference for what is great for them. And even flavor preferences. So just because the kid in your class is using like Skittles, and you're thinking, Oh, my goodness, Skittles, why are they so unhealthy?

Scott Benner 32:44
Right? Yeah, you don't understand what you're talking about, which is a good is a great example of keeping your mouth shut in that situation. Like, they're not eating Skittles, because you're, here's what's gonna happen you you don't know what you're talking about, the kid takes Skittles, and you think in your head, this is why they have diabetes, look how they eat, now, they need sugar to go into their body so quickly, that it can literally fight off this extra insulin and stop from making them too low. So know what you don't know, I think is important. And if you want to know find out more, but don't say silly things to people that, you know, it's not there. It's not their preference to have diabetes, the kids not looking for Skittles, you know, like, an adult doesn't want to get up in the middle of a business meeting and bang a Gatorade back. They're not like, oh, you know, what I want to do today in front of 30 people who I'm trying to get to take me seriously. And that's the other thing too, is that you have to understand that adults often are hiding their diabetes at work, because they don't want you to judge them and like and lose out on unprofessional opportunities,

Jennifer Smith, CDE 33:48
correct? Yeah, promotion and those types of things. And I think that's also in terms of people with diabetes. As I mentioned, initially, you have to really know who do you need to share your diabetes with who is really important as an adult, it might be your boss, it might be the co workers at the team members that you work with, as a child, it might be you know, your teachers, and hopefully your parents will help with that. Even some of your really good friends. I mean, I remember as a kid, when I was diagnosed, it was really helpful to have some of my really good friends know a lot, you know, in terms of like, their understanding language, teaching them things about why I was you know, doing a finger stick and all of that, but I think it comes down to defining who do you need to share with and what applies to this situation? You know, you're probably not going to teach your soccer coach about carbohydrate counting. I mean, that's, that's not purposeful. But you're going to teach them things like hypo awareness and you know what to do in case who to call emergency contact to there are defined pieces I think to teach everybody

Scott Benner 35:01
Yeah. And so it's also important to understand that diabetes is mostly an invisible disease meaning that the people around you unless you're having a struggle, aren't ever going to see it. As a matter of fact, I pulled this up here just so that people can have an idea. Former Chicago Bears quarterback Jay Cutler has type one diabetes. Bret Michaels has it Nick Jonas has it and rice the author has it. Mary Tyler Moore. My close friend of mine coaches for the Philadelphia Phillies Sam fold he has he used to play for the Oakland A's he was in centerfield had type one diabetes. There are plenty of people. The Justice Sonia Sotomayor, right. Right has type one. So you can do

Jennifer Smith, CDE 35:47
who's a baseball player? Atlanta.

Scott Benner 35:52
Oh, yeah. There's a guy. Well, there's a guy pitching for the Cubs. He's been on the show before. Brandon Morrow he has, I think the tight end of the Ravens has it? There's, there's nothing you can't do with type one diabetes. There's a there's a guy that I know really well, who's a four time Olympian who has it, right. So and, and the point is, is that you look at those people, and I don't tell you they have type one diabetes, and you're never going to know these people are. It doesn't mean it's easier for them. They don't have the easy diabetes, because you don't notice it. They work very, very hard. At their health. I know it's hard to imagine. But I the best I can say is imagine that you had to think breathe in, breathe out, breathe in, breathe out where you wouldn't breathe. Like that's what it feels like having type one, I'm going to eat something I need insulin, I'd has to be this much. Not that much. I don't want to get too high. I don't want to get too low. I can't have a bunch of insulin in me when I go for a run later. Because I might get low then he just like constant kind of tapping on the back of your head. You know,

Jennifer Smith, CDE 36:55
I call it diabetes inner monologue.

Scott Benner 36:57
Okay? See, Jenny, Jenny has had type one for 31 years now. 3232. Congratulations. And, and she can tell you that you Jenny's really, really good at managing her diabetes. But that doesn't make it so of course, but that doesn't make it not in her mind. And and so it's there, right? And an everyday conscious effort. Yes, it's so if you're a and I said that, so that you'd hear that. And so that if you are the spouse of a person who has type one, or your child has type one, but your spouse takes care of most of the management, you may not understand what's going into it on an emotional and physical and maybe sometimes lack of sleep level. It's really hard. It's incredibly hard to do well, it's also incredibly hard to do poorly. So if you're really great at managing or terrible at managing, that comes with different struggles, people who are great at it understand, you know, the timing and how to take care of things in a way that maybe some people don't get to understand. But the people who are struggling, are aware every moment of the day that they're probably on their way to complications that are serious because they can't figure it out, or because no one will help them. It's constantly in their head. Now, if you're co parenting, I can't tell you how many people come to me and say can you please find a way to talk to people who are like a divorced spouse or you know a step parent or somebody who's not for the lack of a better term in the fight constantly? Right? They only see a look, he's fine. Yeah, this isn't that hard, or as blood sugar just went up for seven hours. That was no big deal. It is a big deal. And and either you know I I don't normally get preachy, but either figure it out and help or get out of the way. But don't let your ego stand in the way of someone managing their health, which happens a lot. It may not be happening to you person listening right now. But it happens a lot more than you might want to think. Right you know. Anyway, I didn't mean to get like that. I just I know if you saw the notes from like my ex, you know, my kids blood sugar is terrific for a week and then they go to my exes for the weekend and his blood sugar's 300 all weekend long. So incredibly unhealthy. And and I

Jennifer Smith, CDE 39:29
see the same thing with you know, as good as family caregivers could be like you do the best that you can as parents and then you have a weekend away and you're like, Yay, we've got a weekend away but even in terms of those parents that weekend away is not free of diabetes thought right. You know, their thought has gone into prepping whoever the caregiver is prepping their child for they may not know this, so you know, text me if something comes up or you know, the grid And parents or caregivers or God parents or whoever they are, that's taking care of them thinking, well, can't they just have a little of this? Or can't we just give this to them, and we don't have to really worry about it, everything, everything is considered in diabetes. And as you said, you know, that couple of days that they're running now at 300, because you didn't follow the set of directions that you were given. That's making a difference in that person or that child's life.

Scott Benner 40:27
Yeah, no, and so that people can understand when your blood sugar is high, there's too much sugar in your blood and no way to release it, the insulin is what releases it, we're not going to get into super technical stuff. But when you hear later, you know, when you turn on the news, and some guy died of complications of type one diabetes, and you know, what they really died from was a heart attack or a stroke, or an aneurysm or something that comes from too much for the lack of a better term sugar scrubbing away, you know, in the inside of your body, is it going to happen today, if a kid's blood sugar goes up to 300 Watts, because you messed up the insulin? No. But if it keeps happening, it will happen very likely one day. And so you're making a decision today on Sunday, to maybe save someone's life 30 years from now, but that's, that's worth understanding, you know, and just because it's going to be later doesn't make it not super important. And don't forget to, you're helping them be clear minded, you know, thoughtful, being able to learn or perform like, a lot goes wrong inside of the functioning of your body when your blood sugar is high. It just, it's just very important. And the people who love you and are hoping you'll understand are, they don't know how to explain it to you. So they asked us to make this. I will tell you, Jenny brought something up a minute ago that I wanted to kind of like add on to if there was a super simple way to make it, okay. Everyone with diabetes would be doing it already. And you wouldn't have to worry about it. There's no shortcut to it. So if you're having a pool party, I think you really need to try to understand how terrible it is to not invite one kid, because you're scared or you don't understand, or you just don't want the hassle, like, just find some time talk to the parent come up with a simple plan that everybody can deal with, because that kid sitting at home, and they're thinking, I'm not at this pool party right now. I'm not allowed to sleep over right now. Because I'm a problem. That's how it feels to them. Right? I'm broken, and nobody wants me around. And you can't you can't be a part of making people feel that way.

Jennifer Smith, CDE 42:35
No. And if you don't know, like you said, it's ask, you know, a lot of the kids that I work with, that's one of the big things I bring up with a parents, you know, it's if there's going to be a sleepover or something they've been asked to, again, defining a time to sit down with those parents, or even the good, the good friends, parents, and make sure that they have a basic baseline kind of understanding. But I think it also takes from the standpoint of not not being the parent with a kid with type one or not being you know, the employer who has type one or any experience with it, it takes asking, really just I mean, don't be afraid to ask any question is a really good question. As long as it's not, I guess derogatory? No, it doesn't come out as what should you really be doing that? You know, I don't know very much about this. But should you be doing that I

Scott Benner 43:27
know, a lot of people have type one diabetes, don't ask them if they should be eating something that really doesn't sit well with them, you know, they'll, they'll, they can eat anything they want if they know how to use the insulin to manage it. And and so in the end, it's just that idea of, of being supportive. And like Jenny said, If you don't understand, try to find out and understand that when you go to find out, it's very possible that the person you're going to ask the mother of a kid who's had diabetes for six weeks, she might not understand yet either. You know, and so her her instructions might seem like a lot or babbling like, or I've babbled a lot of people when my kid first had diabetes, I'm like, Listen, you don't understand, she can't get high, she can't get low and you start rambling. And before you know it, you're like, Oh, great. I'm the crazy person in the room.

Jennifer Smith, CDE 44:15
You get the glazed over eyes, and they're just like, I always imagined

Scott Benner 44:19
that there are somewhere between like, I'm so glad this didn't happen to me, and why won't they shut up, but they won't shut up because they're scared, right? Because this stuff as much as it seems like, you can make it seem mathematical. diabetes is not like I take a pill every morning, and I'm okay. It's very fluid. It changes pretty consistently depending on a ton of factors. And the people who really understand it, or the people who are living with it are just sort of struggling moment to moment because they don't know what's going to happen next. It feels like you're running for your life in a disaster movie. And you know, you're like a bridge collapses underneath of you and you pull your stuff up on the bank. And then as soon as that's happening, a zombie bite your leg in a building falls on your wife, you know, like, you're just like, Wait, When is this gonna slow down? You know? And at the same time, I know, I just said that, and it's true. This is gonna sound crazy. Don't treat people like they're running through a disaster movie, because they're trying to find some normalcy. And you could be a big help in that.

Jennifer Smith, CDE 45:23
And I think sometimes, within that understanding, let's say you're the teacher, or you're the boss, or you're the coach, and you've, you've been schooled, right? Somebody sat down with you, and they've given you information. They're like, this is the plan of action. And then next year, they come to you, and they're like, Okay, do you understand everything? And you're like, Yeah, I got it, you gave me this whole, like, you know, our long, entire, you know, information session, you're like, okay, but this year, this is a little different, right? This is what we're experiencing now. So know that life with type one diabetes also kind of, it's a little bit more fluid, there's, there's change that ends up happening, you know, last year, to juice boxes at the middle session of a soccer match, might no longer need to be there. This year, the reaction is a little bit different. So, you know, also continue to ask questions along the way to say, well, has anybody anything changed for you? Or you know, is it is it still the same? Do we need to consider anything different? I think that's why, in the beginning of the year for kids, especially, there's always a, there's a point at which you need to go in and you need to re establish that care plan for this year, what's going what needs to be different, what needs to change? Because Because life changes,

Scott Benner 46:38
and seriously, because your grandmother or your aunt or your uncle has type two diabetes, you don't understand type one at all. There's nothing about that, that translates over to this in any meaningful caregiving kind of a way. I remember just recently, we were having a conversation before a school year. And one of the teachers, you know, my daughter's information about her blood sugar is on her cell phone, right, which is really cool. And so the teachers like, well, we take the cell phones away at the beginning of the class, and I laughed, and I was like, that's fine. Arden's not going to be giving you her cell phone, she needs to, you know, make life and death decisions. And she's very good with their cell phone. She's not going to abuse it and everything like that. She was well, what do I tell the other kids? And I said, I swear I said this in a roomful of about 10. Teachers said, tell them if they want to get a lifelong incurable disease, then they can keep their cell phone on them to, otherwise they should shut up. And like, and you have to have the nerve to do that, like you shouldn't to turn to 20 other kids and go, Listen, her situation is different than yours. I don't even care if you but just stop, you know, like it's a it's a big deal. Imagine wanting to use someone's diabetes as an excuse to keep your cell phone or to be a malcontent for a second, and then you as an adult, don't just shut that down right away. Instead, you're like, Oh, well, you know, Kim does have a good point. It's not fair. Of course, it's not fair. It's also not fair that my daughter's carrying a juice box with her and like, something called glucagon in case she passes out to somebody could stick it in her leg. It's not fair either, you know. So just think I'll tell you a common sense, is, is a huge help with diabetes. It really is, and especially about being around them. But let's look, I think everybody understands now hopefully, why don't we drill down a little bit more about how in a situation whether you're a teacher or grandparent who's babysitting or something like that, or a, you know, a boss who's trying to, you know, keep somebody healthy? Like, let's give them more nuts and bolts of what goes on in the day of a person with type one diabetes, and how they may be able to be helpful in those situations. So, I mean, but before we do that, Jenny, I'm sorry. Can you explain to people what it feels like to be high and what it feels like to be low? For you personally, it's gonna be different for some people. But yeah,

Jennifer Smith, CDE 49:01
so lows. As I said just a bit ago, low symptoms for the person can change through the course of life with type one too. So my lows now, I feel as though I have like these racing thoughts. I feel like things are going really like exponentially fast. But I feel like I'm moving through mud. Like I feel like I just can't get there. Even though everything in my brain feels fast. I feel like I'm just moving at like a snail's pace. It feels horrible. I also for a long time it started in college and I didn't have this symptom before but kind of like you mentioned that like Nam with Arden, I have like this numb, tingly tongue kind of feeling for low blood sugars. And I've never Thankfully, knock on wood, I've never gotten to the point of needing glucagon, I've never had to use it in my 32 years of life. Nobody's had to give it to me, I have had to have assistance for treating a low. But, you know, sometimes I've, I've liked started talking kind of weird, like, not really what the whole conversation was about or like mumbling and sort of rambling. And my husband said, like, think your blood sugar's kind of low. And this was before CGM, like we're married early on. Yeah. You know, he knew some of the things to watch for. So I mean, those are my lows. Now, when I was younger, I definitely was shaky. I mean, it was very visibly, my blood sugar was low. And again, that was a time when there were no continuous monitors and pumps were not really beneficial. So but highs, highs, I get really, like tired, and really kind of, like more annoyed, I don't get annoyed, I don't get that like irritated angriness with lows like many people can get, I get that more when I'm high. And I feel like I just can't put a lot of really good, like thoughts together, they're consistently I feel slow,

Scott Benner 51:16
so hard to put the effort in for anything. And it's not something that you can just fight through. It's not like that. It's not, it's not like I didn't get enough sleep last night, but I need to be at work. It's an absolutely physiological issue that is limiting you. So for people listening it sugar glucose is the is the energy your brain runs off of. And having the right amount of it is perfect. Having too little of it, you know, is goes the way we've discussed and having too much of it does something to your body with a working pancreas just keeps you in a great range all the time. So you don't experience all of these things. But a person who may be could do something so simple as let's see, let's say you have a kid in your class who says I have to give myself my insulin right now, because I'm eating in 10 minutes. And you say no, no, no, we're gonna finish this first, don't do that. I don't want you giving yourself insulin in front of all these people. Well, you've now missed time, their insulin with the impact that the foods going to have on their body, which will very likely drive their blood sugar higher and cause what Jenny just described. Similarly, if they say I put my insulin in 10 minutes ago, and I know you want to talk for five more minutes, but I have to start eating now. You can't say no, because then their blood sugar could go the wrong way the the insulin will continue to pull the sugar out of their blood, it doesn't know how to stop like, like a healthy body does,

Jennifer Smith, CDE 52:38
it's expecting there to be food there to work with. Yes,

Scott Benner 52:41
and when that foods not there, they can get awfully low and all the way up to like I don't want to, like, you know, I don't want to make you feel like I'm trying to be dramatic, but you could kill them. And you know, anywhere from shaky to not making sense to angry to seizures to passing out to dying, like if you take too much of that sugar out of their blood. That's like taking electricity away from a light bulb, and you can't turn it back on again, by putting the sugar back in after it's off. So it's really important. And at the same time super important not to make people feel like pariah and and not to give them long term, serious psychological issues around this thing that they you know, I I'm gonna say this, but I don't think it matters. They have nothing to do with getting it. But even if they did, why would you? Why would you want to make them feel that way? You know, and I think that's important. And I don't think any of the people listening to this want that? I think it's just it don't know what they're talking about. And then you make assumptions. You know, I don't know, a lot of the things that we think are is anecdotal, you know, kind of went over like, oh, diabetes, that keys off. My grandmother had diabetes. I understand diabetes, I live with my grandmother for three years. No, that's different. That's probably type two diabetes. And your grandmother probably took a couple of medications and, you know, different thing. But the person who says that I don't think they say that out of malice. I also don't think the person who tells you you're so strong. Thank God, this happened to you. And not me. I don't even think I don't think that person means that with mouth. No, you know, they're in any conversation.

Jennifer Smith, CDE 54:16
We're always trying to find a connecting piece, you know, I mean, communication is that it's a give and take between two people or six people or whatever. But if you're in the, if you're the person that doesn't know, then asked more than talking. Yes. Right. It's it's always, oh, goodness, I you know, I didn't know that you had type one diabetes, tell me what that's like. I mean, that's a very easy, simple, you know, and if the person really doesn't want or need to share with you, maybe they would just say well, you know, I manage it and it's okay, but if they're if you're sharing with them for a reason, then continue to really be more the ask the questions, but don't share too much unless you truly have some experience to share.

Scott Benner 55:01
I feel like before we go over nuts and bolts like management ideas that people will have to intersect with, I think what we should really be saying here is, in case you haven't been paying attention for the last 49 minutes, this is about communication. And most people are terrible communicators. And it's because they don't listen enough, and they interject their thoughts. And it's a very human thing to feel like, you know, but you don't like I could sit here for the rest of my life and make a list of things I don't understand. You know, but I'll tell you what, put me in a situation with one of those things. I probably puff up a little bit, start reaching into my common sense, or, you know, a little bit of my anecdotal information I have. And I started saying, no, no, I know what's up here. You know, it's, it's like talking about, I know, we're recording this during Corona, but like, it's that thing when people step up, they go, Oh, no, no, you know what you have to do you have to do this. How do you know that? Is it because you're a Harvard researcher? Or is it because you heard a guy say a thing, and now two people said it, you're like, oh, that must be true. And that's just how our brains operate. And it's very valuable day to day, it's not very valuable when you're trying to talk to somebody about something important like this, that you don't understand. And they very well may be struggling with as well. You know, so anyway, all right, I'll start you jump in. Okay, I'll do breakfast, you do lunch, and we'll, we'll go from there. My daughter gets up in the morning. And if we're lucky, her blood sugar's been stable overnight. But if she's been low, overnight, we may have had to take away some insulin, or give her food, she could wake up a little higher. Because of that, it could throw off the timing of her eating, she might end up being late for school. Because of that. She may end up being a little rundown, you can wake up if you have a bunch of low blood sugars overnight, you wake up with, but people some people call a low blood sugar hangover. Yeah, right. And so that could be that. So you got to give these people a chance to get their lives moving. And then they've got to get to work. And what if I get myself insolent or on time and I have to get my car then and drive to work. And now I'm scared, I could get low while I'm driving like these poor people, or you're just eating, you got a pancreas, it works. You get up, you make some eggs, you throw them in your face and run out the door. And it's all good. People with diabetes are already 45 decisions into life. And it's 730. And they haven't been in the shower yet. So they so they get that together. My daughter, you know, heads off to school and, you know, half an hour, 45 minutes later, she needs to know what her blood sugar's doing. So she's gonna have to look. So you see, my daughter looked down at her phone in the first in first class, she's not ignoring you, she's making sure that her blood sugar doesn't get out of whack. And then she's got to start thinking about like, Oh, I'm getting low. And I have gym two hours from now. And, and lunch is gonna be in three hours. And, you know, I have to give myself insulin during social studies so that it's working for, you know, all that stuff, right? And they have to count their carbohydrates and their food. So I'm gonna ask Jenny to explain like, what they're doing. They're around their meals.

Jennifer Smith, CDE 58:05
Yeah. So I mean, carbohydrates are is just a big word for sugar, right? I mean, all all carbohydrate foods, like starchy foods, fruit, even vegetables have some kind of carbohydrate or sugar in and when we take insulin, insulin is meant primarily to cover the impact of carbohydrates. So timing is really important around that in terms of like you said, she might need to take her insulin and social studies so that by the time she gets to lunch, the insulin is already there, the way that our insulin today works, it's meant to meet with food in the system. But our insulin has to actually do what we call peaking, kind of get in get working get circulating in order for food, carbohydrates was which digest really fast. Once they start, you know, getting into the stomach, that insulin has to meet it at the right time. And so when we count our carbohydrates, it's a certain amount that goes along with a certain amount of insulin, so that our blood sugar doesn't get too high after that might involve looking at a food label that might involve looking up information on your phone. So that maybe you're you know, visiting an app that's got a calorie or a carb counter in it. You might see somebody again on their phone or their device looking something up, and I guarantee with diabetes that fits around a mealtime. It's not that they're ignoring you or trying to be rude. It's likely that they're looking for information or maybe that they're telling their pump to do something important. Coming into that mealtime.

Scott Benner 59:37
And if you stand in their way of doing that than most people to feel like they fit in next time won't do it, then you'll make their insulin late and they're gone and their blood sugar is going to be higher. Not everybody is me. I don't care what people think I would just do whatever, you know, and I've raised my daughter that way. I'm like, Oh, don't worry about them. Just do what you need to do. But you have to understand that many, many people can't over or come social pressure. And so you pressure him even on the way you don't understand, you may send them in another direction. So they count all these carbs that give themselves their insulin. Now they're not sure if it's going to work, their blood sugar might go up and might go down. Now they might have to have their meter out to check their, you know, they might have to poke a hole in their finger, make some blood come out, check it with a test strip, some people might be wearing a glucose monitor that's feeding their, their blood sugar live to them on their cell phone, there's a lot of gear they have. It's not, you can't restrict their access to their gear is is a big thing. Because I've seen people say like, oh, just leave your bag here. Like I need that bag. I can't just leave it here. And that might mean if you're a teacher, that at recess for this year, you're gonna be wearing some kids bag over your shoulder at recess, and just I know, it sucks, but just do it. And that's it. For for, for I was Go ahead, please.

Jennifer Smith, CDE 1:00:53
Oh, I was gonna say along with that, like in terms of like, what do you have to leave your bag here, whatnot, I've worked with quite a number of adults, especially who are government employees who aren't allowed to run their phones aren't allowed to have certain devices like a phone or whatnot within their government building. And I think the important thing, I mean, if you are certainly, you know, within the realm of being an employer, for people with type one i policies need to change, then that's the biggest thing that I can say, because while the device itself might have pieces that you don't want within the building, you're really restricting their ability to have a healthy life in terms of also what you're asking them to do performance wise on the job, things

Scott Benner 1:01:34
change. And that goes right to what I was gonna say with like school nurses, like, I know, You've been a school nurse for 25 years, and no kid here has ever died from type one diabetes, except the way that you took care of it 15 years ago, it's not the way people take care of it anymore. It's much more fluid, it's, it's, it's better. It just it really is and saying to somebody, Oh, it's okay. Or I'd rather their blood sugar be high than low? No, you wouldn't rather their blood sugar be high than low, you'd rather the blood sugar be normal normal than either of those things. Stop finding either ores in your head, I don't want to go down the wrong road away from away from diabetes, but everything's not black or white. It's not this or that. There's all kinds of other options and gray areas. And just because your brain picks, I'd rather be high than lie rather than behind the load. That doesn't make you right. And that doesn't mean that's the only option. There are a ton of options. Kids having to leave class to go to the nurse to do diabetes related things. That's bad. Okay, I know, you think it's Oh, they need to be around me. So they do it right, you need to everybody needs to teach them how to handle it on their own. Because losing five or 10 minutes of math when you're too, you know, in second grade is one thing, but losing 10 minutes of advanced trigonometry is another thing. You know, like or may miss a whole concept. Yes, and it's gone. And, and if you learned how to manage on your own in the moment, you can just kind of find a need meet the need, keep going instead of wait till the needs a problem. Go to the nurse spend a half an hour getting out of the problem going back much better to be proactive than reactive. And the going to the nurse thing all the time is reactive, it's waiting for a problem. These things can can be done in classrooms. Technology is amazing. My daughter has been managing her blood sugar through text messages with me for a decade. Right and she does no lie. Since the last day of second grade. My daughter who is a junior in high school has not been to the nurse's office for anything diabetes related in all that time.

Jennifer Smith, CDE 1:03:44
Well, even in terms of like safety to, you know, I know that there are a number of schools and families that have worked with well, they have to send my child to treat the low blood sugar to the nurse's station. It's down three levels and across the building and whatnot. And like the blood sugar is low, they need to treat it in class. There's no reason that you're you're sending a kid whose blood sugar is dropping, you know, for a five minute walk through the halls in order to go suck some juice down and a nurse so they can watch and make sure they drink the whole box. That's ridiculous. Like

Scott Benner 1:04:14
they're like, well, we'll send a kid with him like, Oh, great. So there'll be another eight year old there because I am always putting eight year olds in charge of important things. You know, hey, listen, you just go with Jenny. And if she passes out, you know what to do your age. Right? Exactly. 20 year old wouldn't know what to do. We'd be like, Oh, what happened? Jenny fell over. We left her there. And she died. Like, you know, like, you just don't put kids in charge of stuff. It's weird. Like I get if it's a little like, Oh, she just wants to have somebody to go down with and it's all nice, but the nurse's office is for emergencies. And here's the crazy thing. Having type one diabetes is not an emergency. It's just, it's just an extra thing you do during the day, so stop treating them like they're sick time. Stop treating them like they're broken. They're, they're just, they're not, you know, and so and so listen, that they're gonna have to get on the bus where you have to drive home from work. And you're still thinking about your blood sugar. And so if someone comes to you and says, Look, I need you to watch my kid tonight for a couple of hours, or you're the babysitter, or a grandparent, it's very doable, someone's gonna say to you look, eight o'clock, test their blood sugar, you know, text me the number, I'll help you do what you do, if you know if the numbers in this range, that's cool, give him this much insulin, let him eat this snack, you know, and here's what the snack is. Just follow the instructions, the person giving you the instructions is fairly confident that they're that they're right. And questioning them all the time is bizarre, you have any idea how many school nurses fight with parents, like I've been taking care of this kid for 10 years. And you want to tell me how to do it now. Because that's how we've always done it here. Very strange way to come at something. I get that you don't want to get into a long conversation with a family who maybe doesn't understand and maybe, least common denominator, it might make it easy for people who don't know, but instead of doing that to them, like what if you said to them, Hey, I think there's a way we could do this that your kid could be healthier, or you know, that kind of thing. And, and I want to say to I'd like to give Jenny a chance here to talk about what it would feel like if her spouse had those kinds of like anecdotal thoughts and was leaning on her all the time. First of all, I'd be dead. She'd bury him somewhere and so over, she wouldn't take it. But But like, what would it be like for another adult who you respect in all other things, to suddenly have thoughts about your health that that aren't warranted or founded?

Jennifer Smith, CDE 1:06:45
It would be it would, it would feel horrible. I mean, this fact that somebody that, like you said, you care so much about and that you have a lot of good rapport, and almost every other thing that you talk about and live with and decide about together? I mean, it would make you feel kind of countered, honestly, in terms of what you've been doing. And also like visually how you feel like they're now seeing you. Like, is it all about this? Is this all they see now? is are they really gosh, they're they're really worried about this, or they feel like they don't have any, there's no confidence there. And what I in what I'm able to do for myself, you know, I've been managing this for 30, some years. They feel like, I can't do it anymore, that they're constantly asking, like, are you okay? Or did you just check your blood sugar before bed tonight? Because, you know, I heard your Dexcom last night or whatever.

Scott Benner 1:07:38
Feeling like feeling like someone looks at you and sees diabetes, not you. Is is is kind of crushing. You know, and that's another great little tool you're looking for a tip don't lead with how's your blood sugar every time you see somebody, something else first, how's the day? Isn't it sunny out, blah, blah, blah. Like, even if you're the school nurse, like just walking in there. It's a drudgery for kids to do that.

Jennifer Smith, CDE 1:08:00
Like it's very rare for my husband to actually like, ask, even if he hears like my Dexcom making a noise or something. It's very rare for him to ask I he does have the follow app on his phone. And even with that, he never I think it was maybe a month ago that he texted me to ask, you know, I've gotten these like urgent, low alerts. He's like, you know, and I've gotten a couple of them like, are you okay? Is kind of all he asked or, you know, and I was like, Yep, it's a sensor. That's totally off. I was like, I just restarted it this morning. Difficulty? Yeah, I actually texted him a picture of like, my actual like, finger stick. I'm like, I'm like, 92. Totally fine. He's like, Okay, I just wanted to make sure that he's like, because I keep getting them. And I just wanted to make sure that everything was okay. But other than that, usually it's not, you know, it's not even something.

Scott Benner 1:08:55
But it wouldn't be pleasant if if he was constantly.

Jennifer Smith, CDE 1:08:58
No, in fact, usually my my late native work, in which he doesn't work, he usually makes dinner. And he'll actually usually text me and ask, you know, hey, I was going to make this this evening, you know, this is how much carbs in it because he knows that I need to Pre-Bolus Or he'll have measured something for me. And this is how much was in it? Or, you know, when do you think you're going to be done? Because he knows that the Pre-Bolus component is really important. So those kinds of pieces are really helpful. They're not like, annoying,

Scott Benner 1:09:31
too good example. It's a good example of him. Like, look, what are we saying, listen, talk, ask questions, be empathetic, do things that are actually helpful, not that you think are helpful. I learned that from being married, by the way, that the things that I think my wife wants aren't necessarily the things that she wants, and that you know, and that I would be much more helpful if I did the things that would actually be beneficial to her and not the things that I feel would be beneficial, right. So listen, talk, ask questions, let them talk realize it's hard for them as well. And like Jenny said, at the beginning, set a time to sit down and talk about this. And if you don't understand, keep asking and understand that things could continue to kind of morph and grow and change and that what you know, today to be true very well may not be true a year from now. Right, you know, you've no idea how things evolve and change hormones and kids are huge stress is, is can sometimes be hard on your on your diabetes, but I really do want to make sure that no one leaves this feeling like oh, well, people with type one diabetes, I shouldn't hire them. I shouldn't put them on my kids baseball team. It's not the case, with with good support and understanding. I mean, this, okay, you guys are listening. Because somebody sent you this episode, you don't know this podcast, you don't know me. I've met 1000s of people with type one diabetes in my life. And overall, some of the kindest, smartest tuned in people that I've ever met in my life, like, imagine how tuned during you are when you have to understand the inner workings of your body constantly. You want these people on your side, like they're, they're great teammates, they're there, they're great coworkers, there's just a little bit that they need you to understand. And then you'll find a rhythm, that's the other thing is like, this isn't forever, you'll find a rhythm together, whether you're you know, a, you know, the parent of a friend of a kid or something like that, or whoever you are, in the scenario, you do this, at times, it won't be a thing anymore, you'll just you'll have it, you know, and it's worth doing because you're gonna get to know some great people who otherwise may be marginalized. And I don't know, just think about it, like you have an opportunity to put in a little bit of effort to figure something out. And keep a kid from being a kid who's not invited to a birthday party, or a person who loses a job that they're completely qualified for, because they got low at work, and nobody knew how to help them that made all of you nervous, you know, that sort of thing. I want to say to that, if you really want to dig in more there episodes of the podcast called defining diabetes. And they're very short. And they, they define very specific things. So like, if we set a word here, like Bolus or Pre-Bolus, that you didn't understand, it will explain that to you very simply. And if you really want to dig down deep and understand what people are thinking about when they're managing their blood sugars, there's an entire series of episodes called diabetes pro tip, right? So it's diabetes pro tip Pre-Bolus diabetes, pro tip, something, there's maybe 20 of them by now, if you really want to understand what people with type one diabetes are thinking about. Those episodes will take you well inside. And same thing for people listening who were like, I can't make anybody understand Pre-Bolus Sing like just you could send them one of those. So yeah,

Jennifer Smith, CDE 1:12:51
I was actually going to mention that too. So yeah,

Scott Benner 1:12:53
thank you very much. And this is the first episode that Jenny and I recorded with her new microphone. And I have held in my excitement about how good she sounds the entire time we were doing this. So for regular listeners to the podcast, you're there. All right now going like Kenny sounds so much better. And for everybody else. They're like, huh, I didn't know that was a big deal.

Jennifer Smith, CDE 1:13:13
I asked Scott, if it was actually going to get rid of my Wisconsin accent. And he's like, yeah, probably not. No, it'd be so much clearer.

Scott Benner 1:13:19
You talked earlier about the night, your husband, you work late, and your husband cooks. And there were four words that if I hadn't spoken to you so much, I don't know that I would have known what you were saying. Oh, really. But that's right. I said water a couple of times in here. So everybody who's not from Philly is like, what is wrong with this guy, thinking I'm having a stroke, probably. Anyway, I really hope this was valuable. I know, it's not possible for us to cover everything. But the goal was for you to be the person who's in some way supporting someone with type one diabetes or wants to understand better. And I hope that by listening to this, you have a better understanding, I think you will.

Jennifer Smith, CDE 1:13:58
And also know that you are really important in terms of the person's like feelings about things and that background support piece, you're a really important part of that as long as you understand things in the way that you need in order to provide that support. So

Scott Benner 1:14:16
I think in the last thing, I think I want to say is that as my dog barks, that you don't want to separate yourself from a person's life because you're scared of their thing. Like that hurts like it might because I talked about co parenting earlier and spouses who aren't as involved. I believe sometimes they just don't want to mess up. So they step back but you end up alienating the person with diabetes and stranding the person who's trying to help them and and I know it's a lot to figure out but you could like Trust me I know as you're listening you don't know me, but I am. There's nothing special about me and I understand diabetes really well. And everything I know about it and Jenny knows about it. We put into those pro tip episodes. So you If you're just a dad or a mom, or you know who's like, I don't want to get involved, because I'll mess it up. You know, you're doing other things that I think you don't mean to be doing in your relationships. And if you understood it better, I think you could do better it would help. Yeah, it really would. Anyway, I could keep talking about this forever. So let's just stop. Jenny, thank you very much for doing this with me, of course. This is usually the place where I thank the sponsors and the guests, but instead, thank you for listening. Thank you for wanting to know more about type one diabetes, for spending the time to try to learn. If you have more questions, you can look for episodes of the show called defining diabetes, or other diabetes pro tip episodes. Just look right there and your podcast player and check it out. And if you're looking for a place to pick around even a little further, there's a blog at juicebox podcast.com. Thanks so much to Omni pod Dexcom touched by type one, that Contour Next One blood glucose meter. Lily's chocolates, G Vogue glucagon T one D exchange. It think that's it. Those Those all the sponsors. We have a lot of sponsors. Thank you for being sponsors. Seriously. Get a free no obligation demo of the Omni pod tubulin and tubulin tubeless insulin pump at my Omni pod.com forward slash juice box. Their demo is absolutely free and has zero obligation. Learn more about the Dexcom G six continuous glucose monitor@dexcom.com forward slash juice box. Get what I think is the best blood glucose meter on the planet at contour next one.com forward slash juice box. lend your voice to insanely incredible diabetes research. T one D exchange.org. Forward slash juice box. You want to pre mixed prefilled glucagon it even comes in a Hypo pen. It's amazing G voc glucagon.com forward slash juice box no more mixing up your glucagon people and lilies chocolates make some great chocolate with far less sugar in it than you expect. Their ads will begin in the second half of 2020 and they will be accompanied by a savings coupon so you can try some lilies and save some money that's coming soon. Check out my absolutely favorite diabetes organization at touched by type one.org. I know this episode didn't quite fit in with the other diabetes pro tip episodes. But I do think this is the place to put it. As I think about everyone learning about their type one at some point part of it becomes talking to other people about type one diabetes. So this is where this belongs. Thanks so much for listening. I'll see you soon.

I hope you enjoyed this best of the Juicebox Podcast episode. We enjoyed bringing it to you. Number of people suggested episode 371. But I want to shout out Willie as a specific person who who threw this one out there. Appreciate you guys listening check out the private Facebook group. If you want to know who's picking these episodes. The people inside of the private Facebook group for the Juicebox Podcast. It's called Juicebox Podcast. type one diabetes has over 33,000 members right now. Great conversations happening there's something in there for you. The podcast is supported of course by sponsors like Omnipod Dexcom, the Contour Next One blood glucose meter, G voc hypo pen, Athletic Greens makes ag one and cozy Earth now who else? Sorry, advertisers touched by type one T one D exchange not an advertiser, but we love it when you help them out. Because it helps us out too. I think I got everybody us med get your diabetes supplies from us, man. Anyway, there are links in the show notes of this episode, and links at juicebox podcast.com to all of the sponsors. Check them out. And of course don't forget cozy earth.com 35% off with the code juicebox thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#835 The Kookaburra Laughs

Anne's son has type 1 diabetes and more.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 835 of the Juicebox Podcast.

On today's episode, we'll be speaking with Anne, and as the mother of a child with type one diabetes. And I need to tell you that for the first like three minutes of the podcast, we're using a microphone that we don't finish using for the rest of the podcast. Anyway, and sounds bad for the first couple minutes, but you need to listen so you know the details. Plus, I don't know, I think it adds to the flavor of the episode. So I left it in. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, and you want to help with diabetes research, you can do that from your home at T one D exchange.org. Forward slash juicebox. You don't have to go to a site or see a doctor. It's HIPAA compliant, absolutely anonymous, and really will help T one D exchange.org. Forward slash juicebox should take you like 10 minutes. This episode of The Juicebox Podcast does not have any sponsors. So I guess two things. If you'd like to sponsor the Juicebox Podcast, reach out, I'd love to have you. And if you're looking for the diabetes Pro Tip series, ask Scott and Jenny afterdark, algorithm pumping, bold beginnings defining diabetes defining thyroid, the variable series of mental wellness stuff, it's all available at juicebox podcast.com. It's also available in your podcast app. But if you're looking for a place to pick through the episodes, see which ones you might be interested in, it's right on the website, go up to the top to the menu, click on something I'll pick algorithm pumping. Click on that gives you a list of the episodes that are in the algorithm pumping series. You can even begin to listen if you like online with a player that's there. Or you can take note of the episode number and search for it in your favorite audio app.

Anne 2:31
Hi, my name is Anne and I live in Brisbane, Australia. And my youngest son Xavier is a type one diabetic.

Scott Benner 2:41
I feel like your voice is a little low. Sorry. No, don't be sorry. I'm trying to figure out if we want to use are you using like Bluetooth headphones? No. They're they're wired is the is the microphone moving away from your mouth by any chance?

Anne 2:59
No, it's right next to my mouth hidden because

Scott Benner 3:02
when you talk with more enthusiasm, you're louder but when you were like hi, man, that it was a little soft. So alright, well then there's not much we can do about it. I guess then. Alright,

Anne 3:14
I'll just have to talk with enthusiasm. Exactly. Just,

Scott Benner 3:17
you know, like you're making that movie that we all saw the 80s and is the only reason we know about Australia. What was that called? Crocodile Dundee just always be projecting? Like, like a crazy person in an 80s movie.

Anne 3:32
Awesome.

Scott Benner 3:36
So tell me again, how old are you?

Anne 3:40
Too old about your age?

Scott Benner 3:42
50 ish. We'll call it Yeah, yeah, yeah. And we're talking about son or daughter. I'm sorry. Son, son. How old is 11 years old? Xavier is 11 Okay, how long has he had type one?

Anne 3:58
He was diagnosed in April of 2019. So

Scott Benner 4:05
can we try taking off your headphones and seeing how it sounds? Your voice is disappearing

Hello, hello. Just speak at a normal tone. You can't hear me can you?

Anne 4:35
Yeah, I can hear you now or you can Okay. Is that better?

Scott Benner 4:38
It is but are you yelling? I'm

Anne 4:45
thinking projecting. I'm projecting I'm not yelling. I'm just projecting.

Scott Benner 4:49
So be you're seated. Right? Yes. So just bring your laptop a little closer to you. And then just speak normal and let's hear it like that. Okay, hang on. Also some Yes. I think it's I think it's actually going to be better than the headphones. Okay, worse. Yes. Some is Xavier a low do you need to do something?

Anne 5:14
Oh no, he's dead say I have treated him before I came so he shouldn't be okay.

Scott Benner 5:20
You treated, treated treated. Oh, it's like, Oh, I thought you treated the kid. I thought I hear you take the

Anne 5:25
kid now. Wow, sometimes.

Scott Benner 5:29
Alright, so just to go over a little bit, especially now without the headphones. Just try not to like bang around or touch to stuff or anything like that. But if Xavier is 11 He was diagnosed three years ago. Do you have any other children?

Anne 5:42
Yes, he is. He is the youngest. Sorry, that's his diabetes.

Scott Benner 5:50
Nightscout I hate that noise that Nightscout.

Anne 5:55
No, I just turn it off.

Scott Benner 5:57
You're fine. They go back to you. That always makes that noise. Like you always open up the app to do something. And then you're somewhere very quiet. And then it makes that noise. You're like, stop, stop, stop, stop.

Anne 6:13
Exactly, exactly. Yeah, he's the youngest of six,

Scott Benner 6:19
six children that all came out of you. Yes. Wow. Yes. Look at you go was you know, I don't like to ask like this. But did you make exam you're on purpose.

Anne 6:35
It's like this, the first two were really hard to get. And they I left babies. And then the rest sort of just appeared by themselves. And you just have a different attitude. It's like, you know, what the universe sends you? And then the universe was very abundant. And then we finally went no, that's it. No more.

Scott Benner 6:58
Did you have that feeling at first like it was so hard to have children? It's it's weird to say no, when they keep happening?

Anne 7:04
Oh, definitely. Definitely.

Scott Benner 7:06
I understand that. Yeah. Alright, so let's start at the top. How old's the oldest?

Anne 7:11
A twins so I've got 19 year old twins. A boy and a girl. And then I've got a 18 year old boy. And a 15 year old boy and 13 year old girl and then save us. 11

Scott Benner 7:27
Wow. That's very cool. It was a

Anne 7:29
busy few years.

Scott Benner 7:31
I really it was only about like, if you take Xavier out of the mix. It's only about seven years, right? Oh, yeah. Seven years three pregnancies. That's not bad.

Anne 7:42
Yeah, that's Bob.

Scott Benner 7:44
Excuse me. I almost forgot one of your pregnancies with inside of the seven year window. So that's really that's crazy. See, I would have had a boy and a girl twins and I would have been like, oh, look, we're done. Perfect.

Anne 8:00
Well, I think my husband probably thinks that sometimes

Scott Benner 8:02
give me when he's at work for 43 hours a day trying to pay for everything.

Anne 8:10
But he can't get to golf up to the golf course. Because there's so many things to do for the children.

Scott Benner 8:15
Hey, in Australia don't things on the golf course try to kill you.

Anne 8:21
I think that's Florida.

Scott Benner 8:22
Oh, yeah. You're right. I was confusing Florida with Australia.

Anne 8:27
We just have kangaroos mainly.

Scott Benner 8:30
I love a good fistfight with a kangaroo. Those videos. Those videos are terrific. Any of the other kids or your husband or yourself have autoimmune issues?

Anne 8:40
Yes. Not the other kids so far, but there's quite a bit in my family. We've I've got Hashimotos my sister's got Hashimotos my mom's got Hashimotos we've got Pernicious anemia. One of Xavier's cousins has MS.

Scott Benner 8:59
MS. Yeah. A lot of autoimmune stuff in there. Okay. Yeah. All right. But nobody was looking for diabetes when he was diagnosed. Oh, no, no, he was eight years old. Right. Is that right? Yes. Yeah, he was having to present to you.

Anne 9:20
Really out of the blue. He just although I had I had it was the first term of school for the year and I had been looking at him and going there's just something not quite right with you. He had nothing specific. He didn't have the, you know, constant pain or constant drinking. It was summer so he was drinking anyway. And he just didn't look good. And he had like big black eyes and all of that sort of thing. And I thought oh, you're just not thriving. I'm I'll make a doctor's appointment for the school holidays and we'll get you seen too. And then the week before the school holidays, he He came in one night, one night on a Sunday night he they're allowed to have a glass of soft drink. And he only had diets often anyway. And after dinner, he asked for another one and I went, Oh, we don't get to eat. And he went okay and went to bed next morning, he woke up vomiting. And I went, Okay, you've got something so stay home from school and he wasn't too bad. And we got through the day, but I made a doctor's appointment for the next day. And I had noticed during the day I pulled up his shirt, His breathing was a bit funny. And I pulled up a shirt to listen to him. I could see his ribs. So I knew he'd lost weight. So then I weighed Him and He will lost a significant amount of weight. But he often got croup, so I sort of thought, Oh, it's great. It's fine. And when he woke up the next morning, he was vomiting again. And then he just was he was in a real state, he couldn't get off the floor. His breathing was shallow and rapid. And we still didn't go call the ambulance or anything. He'd still we didn't even think about it being life threatening. And we took him to the doctor's like within the hour, and the doctor took one look at him and fingerprick doing well. He's type one diabetic. I'm calling the ambulance and off we went to hospital when he was DKA. Oh,

Scott Benner 11:20
my goodness. Yeah, I was gonna say it was definitely DK. By the way, they only get one glass of a soft drink because it's too expensive to buy it for 234568 people. Is that why?

Anne 11:33
It was just, you know, we were trying to limit you know. Yeah. And they were all little them now. It's a very different story. They're all older

Scott Benner 11:42
and they don't listen to you anymore about what the drink

Anne 11:46
exactly three of them or 18. They want alcohol and stuff as well.

Scott Benner 11:51
That's funny. My son doesn't drink but he orders an iced tea that's not that's sweetened. And even that makes me upset. Like, I've never said this to him. I never would. But he'll order a sweet tea while we're at lunch. And it makes me upset because I want him to I want him to order an ensuite thing. And I'm like looking at him exerting himself over here with the sugar. So

Anne 12:15
did they make their own decision?

Scott Benner 12:16
I know. Right? Darn it. So you you sent me quite a little note here. Let's start just with coming out of the hospital like what? What's it like in Brisbane getting diagnosed?

Anne 12:32
They sent us home. Well, we had you know, some education, obviously in the hospital, and sent us home with pens. And they did talk to us about a CGM. And booked in in back. I don't know, we seem to have supply issues always or whatever. And it was months behind. So it was like four months later when we got it. But it was Dexcom. And it was a Dexcom five, hang on the I've got a puppy and she has decided she doesn't want to be where she is.

Scott Benner 13:04
So that's fine.

Anne 13:06
It's alright, if you come in and out. She's very nasty. That's what you need.

Unknown Speaker 13:16
Yeah. Great.

Anne 13:20
So and then you go back and you have classes, you go to diabetes school, and which I was really quite surprised how limited it was even with my very limited knowledge about diabetes, that it was really centered around carb counting and how that worked. And it really didn't talk about any of the other stuff.

Scott Benner 13:55
It gave you that feeling like while they were teaching you that there must be more to it than this.

Anne 14:00
Oh, absolutely. Absolutely. So where do I sign up for the next class was my feeling and of course there wasn't anything

Scott Benner 14:08
that was gonna say there was no next class.

Anne 14:11
Just go out to the world and find your own way.

Scott Benner 14:15
Well, what did that lead to? That lack of education what kind of like outcomes did you have initially? Do you think he was honeymooning in the beginning?

Anne 14:26
Um, no, they think he never honeymoon. He was he was on. He never he never really dropped from his initial dosing. And his needs just got more and more really you know, I thought we were going okay for the first few months. Although he did hypo a lot at school. And then when we got the dex calm, I could obviously see what was going on. And I'm like, I was really shocked the day we got the day Dexcom because the, the nurse, the diabetic educator, actually that said set us up was a diabetic herself and more a pump ended Dexcom. And I said, Okay, well, what do I expect to see from this? You know, what do I see post meal? What do I see here? She has autunno

Scott Benner 15:19
just didn't give you any idea at all what what to look for? No,

Anne 15:23
no. So of course, that sent me down the rabbit hole of the internet. What am I supposed to see? And what am I supposed to do? And all of that sort of stuff. And, you know, I was seeing really crazy things on his graph. And you know, he had that really big spike at about two o'clock in the morning, and it would last for a couple of hours, and then he would wake up and he'd below and

Scott Benner 15:52
when we talked about low, how low was he?

Anne 15:56
Oh, well, it shows his low on his. So under two

Scott Benner 16:00
under two. Okay, so for everyone else like a 55 ish, right around 5455 is a three. A two is 36. So like, like scary, worrisome. Low. Yeah. Any seizures? No. Okay. And then when he got hot, what would his spikes look like?

Anne 16:22
Oh, like, you know, 25.

Scott Benner 16:25
Wow. That's like 450. Yeah, yes. And you okay, this is interesting. So you were bouncing hard. Up, down, up, down, up, down. Yeah. Okay. And when you when you see this happening with a meter, I mean, how long were you on a meter before? You saw the CGM?

Anne 16:44
Ah, about four months,

Scott Benner 16:47
four months. So for four months, I imagine you were just chasing right like feed the lows. Inject the highs feed the lows and Jack the highs? Yeah, absolutely. So then the CGM comes into play. What's your first thought when you see it happen kind of in real time in front of you?

Anne 17:05
You know, I need to learn more I need you know, someone has to help me find answers. So, you know, I went to our first follow up appointment and said, This is what's happening. And you know, this, you know, I'm seeing this high in the middle of the night and what do I do? And they went, I don't know why that's happening. Really? Calculate how many I don't know it's I got but yeah, I don't know.

Scott Benner 17:32
What were you at a regular, like, so I don't know how it's how was it broken down in Australia? Like, were you at an endocrinologist?

Anne 17:40
Yeah, they had. It's, we've got a major like Brisbane, fairly big city. Yeah. And we've got major Children's Hospital. That's just, you know, a children's hospital and we were in had guests had endocrinology appointments. And there's a whole department that you go to and they've got diabetic educators. You hear the cooker virus?

Scott Benner 17:59
Yes, that was that was I thought for sure someone was abducting a child behind you. What is that? Cocoa bar is

Anne 18:05
it's the sun's starting to come up and the cooker bar is waking the morning up.

Scott Benner 18:12
What the hell does that mean? You mean? Wait, hold on. You're using words. I don't know. Are you? Are you saying chickens?

Anne 18:20
Cougar bars.

Scott Benner 18:21
Okay. Hold on a second. This is gonna be our first Australian roadblock here in the episode. How do I spell that?

Anne 18:33
Okay. You U cookoff. Bara kuca? So KWOKAB You are a?

Scott Benner 18:46
I got it. Hold on. They laugh. Oh, they sort of look at that. They're not particularly large birds, right? What are they? What big? No kidding. Yeah. Well, they seem adorable in the picture white brass brown wings and tails with little blue on the big beak. And they laugh.

Anne 19:09
Do they have

Scott Benner 19:13
that's I mean, I swear to you, I heard it. I thought I thought can add and I get these kids under control. And then tell everybody what time it is there for you.

Anne 19:25
is quarter to six in the morning.

Scott Benner 19:29
Yeah, thank you for doing it like this. I really appreciate it. I am also recording not nearly as early as you I'm later much later in the day than I normally do. But okay, so now that the cocoa Berra is that what they are cook, cook. Cook Amaro. Yeah. Okay, now that they're done or will they do it again?

Anne 19:48
Oh, they might do it again because they do it as the dawn happens. It's like that in Aboriginal folklore. They they welcome the morning.

Scott Benner 19:59
Yeah, bye My wife welcomes the morning every morning she wakes up, she says rub my hand, scratch mine. It's not the same thing from my hand a little more my fingers from my fingers. Okay, I'm over here. I'm like my hand is no, nobody cares. Okay. So so I'm sorry. So you get the CGM. And you start to be able to see these bounces. And they are as I'm expecting, right? Like you're from very low, shooting straight up very high back and forth. And then you go as you go ask for help. And the help you get is I don't know. So then Yeah. So you know, it's a problem. But what do you have? What do you do once a doctor says, I can't help you.

Anne 20:37
Go to the internet.

Scott Benner 20:40
Excellent. How do you even know where to begin? On the internet? You just Google?

Anne 20:45
Just start Googling. Yeah, I just started googling.

Scott Benner 20:50
What was your first intention? Like what were you trying to accomplish in the beginning?

Anne 20:55
Just to get more informed and to try and find some answers. Because I knew there had to be answers. There had to be more information somewhere. It just wasn't available where I was.

Scott Benner 21:11
You know how unbelievable it sounds that you asked the doctor a question like that. And they just said, I don't know. Oh, I know. It's fascinating. Like a nurse ever grabbed me in the hallway and say, listen, here's what you do, or like, nobody tried to help.

Anne 21:26
No, no, it was very, very frustrating and demoralizing. And I felt very alone. And I lost a lot of faith in the medical system completely.

Scott Benner 21:38
I would imagine, do they? Did they label him? Like are they called to use? They tell you you're not doing the right thing. But you didn't do what they told you. They call him brittle. Like any weirdness like that.

Anne 21:51
They just said he's, he's not he's not doing typical things. And at the beginning, they didn't label him. And they didn't. They weren't mean to me or anything. But they certainly weren't helping, you know, I was getting no sleep. And I'd go in and I cry, and I do all those things. And they just like, well, you know, you just got to get through it.

Scott Benner 22:14
He's only eight. How do you what do you mean? Like, for 30 years? Yeah. That's fascinating. So I mean, looking back now, where his ratios wrong? Was this basil wrong? What do you think it was?

Anne 22:28
No, we needed to do lots of changes of technology of his insulin, we needed to do lots of stuff. And we certainly have done that. And since then, but I think when you get diagnosed, the way we got diagnosed here, we have very, two very different systems. One's a public system that everybody can use and one's a private system, which obviously you pay for and you have health insurance to pay for. And when he went through the hospital, they said to me, Well, you have to stay in this clinic for 12 months, before you can go off and do anything else. Which I now know, isn't correct. But that's what I was told I was doing the right thing. And I got to, I don't know, nine months, you know, it's when I just can't do this anymore. You're not helping me, I have to find a different way. So I found a private doctor. And we went in and you know, at the first the first meeting, we changed insolence straightaway. And he said to me, Well, you know, the hospital has an arrangement with the companies, and that's the one that they use. So that's the one they use.

Scott Benner 23:49
So you actually changed like his Basal insulin.

Anne 23:53
And his and he's just on over rapid. And let me to start with okay. And we changed both.

Scott Benner 24:01
Where did you go to?

Anne 24:03
We went to human log and Lantus.

Scott Benner 24:07
And that was it was just that a difference? Or did you also start getting better understanding of the settings the amounts that needed to be used?

Anne 24:17
While he was still pretty crazy? When he changed? When he changed? Insulin, we saw a little bit of a difference. But we were battling all sorts of things. We were battling skin problems like he he wasn't a sick kid before he got diabetes. We didn't know. But he was allergic to all the medical tapes. So you CGM 's were an issue. He was you know, crying, itching and he had this all over ah, and we didn't know whether it was from insulin or whether it was from the type. His skin was really sensitive. And so we tried every medical tape in that we could get a hands on, we went down lots of different roads, you know, I've had him allergy tested, I've heard him lots of things. And you know, the diabetic educator that goes is that my endocrinologist that he's allergic to something? Well, I can see he's allergic to something, all his injection sites are red, all that sort of stuff, took him off to the allergist. And the allergist, tested him for insulin, but and said, Oh, no, he's not allergic and to do any more testing would be too invasive, so we won't worry about it.

Scott Benner 25:40
But he's just the just, I mean, it's having a reaction to the to the tape on the Dexcom. Right. At that point, that's what it is. Right. So do you. Does anybody help you like with barrier creams and wipes and things like that, or nobody brings that up?

Anne 25:56
Well, I had already, you know, I'd got on Facebook groups and all that sort of stuff. So I was well aware, I was I was more aware than they are of all the solutions. So we had tried, we've tried every single solution that is on the internet out there. We've tried every type, we've tried everything. We still don't really have an answer. And we tend to cycle through things. Even CGM, we cycle through we try different ones and and it's he seems to have a period of less reactivity with if you're with a different one, then it'll build up. It's like a buildup of toxicity or something. And then we change and go to something else just

Scott Benner 26:41
get bouncing back and forth so that nothing ends up. Does he have other allergies?

Anne 26:47
Well, you does now we've we have discovered that he's actually allergic to zinc. Really? Yeah. And so every inch one except a Piedra has zinc in it.

Scott Benner 27:00
Okay. How do you find out he's allergic to zinc?

Anne 27:04
A process of elimination?

Scott Benner 27:06
That's your long unpleasant process? Yeah. Yeah. Well, so how does that how does that present?

Anne 27:14
Well, it's just like, it's a systemic thing. Because it wasn't just, it wasn't just the tape that was itchy. It was his whole body was itchy. It was you could see how uncomfortable he was. And of course, we had him on any histamines and all sorts of things to try and counteract that effect. And when we finally discovered this, and we said, well, we have to find and think free insulin. And I had known about a pager from you. And I didn't know it was zinc free. But I'd done my research and discovered that it wasn't free. So I went into my endocrinologist and said he's got to have this one. I don't use that one. I don't care.

Scott Benner 27:58
Look at the boys. He's he lets go. Yeah. So he's go on did making that switch change his reaction to it? He's um, so no,

Anne 28:10
not really. But it certainly helped the all over.

Scott Benner 28:16
Yeah. Okay. Yeah. And how long did it take you to figure this stuff out about the adhesives in the zinc? Couple of years? Wow. That sucks.

Anne 28:27
Because I was doing it all on my eye. Yeah. And nobody, I'd go down one road, and they'd go, oh, yeah, that's too hard. I don't know. And so then I'd have to come back to the drawing board and do all this research and then go in and present them with information and go, he needs to have this test or he needs to have that test or,

Scott Benner 28:46
and you've tried and you actually try it. Like she started off with more of like the state run hospital and then you went to a private doctor who really wants you push them further things wasn't much more helpful, honestly.

Anne 28:56
Absolutely. Yes. You know, we've got, we've got a pump. And we got a diabetic educator and all of those things, but, and he will give me mainly what I want, but he doesn't have any information for me and happily says you have more access to current information than I do.

Scott Benner 29:13
Well, that's not true. He must have the internet also. Exactly.

Anne 29:17
It's about wanting to know it, isn't it?

Scott Benner 29:20
You have more access, because when you go home at night, you pay attention to this, and I don't how old is this doctor?

Anne 29:30
Oh, he's he's probably in his early 60s. I reckon.

Scott Benner 29:38
You need a younger doctor.

Anne 29:40
Oh, I know. I'm desperately searching him and I have got my name down at a different one. But there's a real lack. There's probably, I don't know, five or six, pediatric endocrinologist in Brisbane. And all of them are on the older side. Yeah, and yeah, It's like free clinics. And that's it?

Scott Benner 30:03
Well, you're not painting a fun picture, that's for sure. No, hasn't been a lot of fun. So when you get online and you start learning things, I mean, you Google, where do you end up? You end up on blogs? Or podcasts? Or what do you find first?

I am only going to take a moment to tell you about the private Facebook group Juicebox Podcast, type one diabetes, it has 34,000 members in it, don't let that overwhelm you, that's just a lot of voices, that maybe has the answer that you're looking for. So you put a post in there, you're gonna get some great feedback, you might see something that you know about that you want to share your knowledge for, or maybe you're just looking for companionship, or community, maybe you just want to lurk just so you don't feel alone. You can do that at Juicebox Podcast, type one diabetes on Facebook, it is a private group. That's important, because then you can feel comfortable there. So when you get to it, you're going to need to answer just a couple of questions. So we can make sure you're a real person. And then you'll be in. And you'll be enjoying what everyone else is doing. In the group. I literally just pulled it up now. Actually, two things. In the feature tab, if you're looking for the series that I talked about the beginning, there's a whole list of them there, as well as other featured posts that are in the group. But just out on the regular board, right? People are talking about everything. Here's a brand new post, somebody's talking about just not feeling great. Do you ever feel like there's a dark cloud, it starts out, this post has only been up for 11 minutes and 36 people have jumped in to give their support. There are all kinds of things on this page, from management, to community, something for everyone at Juicebox Podcast, type one diabetes.

Anne 32:08
I find lots of medical information is sort of where I went down the path of and I chased everything. And there was lots of organizations that I sort of I'd go into one with an organization and they'd say something and then I'd take that little bit of information. And then I'd Google that and all that sort of stuff, obviously, on online also, I was on through Facebook, I got on lots of groups and anything they said I would go on and that's obviously where I found the juice juice box. And I think for the first time I sort of took a big sigh of relief and went oh my god, there's somewhere that knows something.

Scott Benner 32:53
It's there. Yeah, that's silly. I really do find it to be silly, but it's like through Facebook that you find a thing and it's wonderful, but it's just, it's odd. Hey, I'm sorry. Do you live anywhere near I'm gonna mispronounce a word in a second to see you know, do you live anywhere near? God? What is this? into roughly into Indra? pilih. Indra Pillai, do you live near there?

Anne 33:16
No, no. Okay. On the other side of the city. We live in a suburb called Cappella Bob.

Scott Benner 33:23
Who made up these words? There's just a on my list at juicebox docs.com. A listener has suggested a provider named Rachel Baker. And she's at McIntyre health. So I wasn't sure if you live near there or not.

Anne 33:40
Yes, no, I did not. I did listen to Rachel's episode. Yeah. And

Scott Benner 33:47
not close enough. Well,

Anne 33:49
no, it doesn't matter. I would travel. That's fine. But she doesn't have a doctor. She because she's a diabetic educator. So

Scott Benner 33:57
oh, she's in the private system. So it's just her helping out? I see. Okay. Yeah, I gotcha. Gotcha. Okay. So did you think? Well, no, that's not my question. So so my question is, now you have the CGM, you've been online, you're learning about things. How do you start to they begin to find stability? What's the first adjustment you make? Do you remember?

Anne 34:25
When he got his palm? We, the process was that I would use to remain to the diabetic educator every day and we would start making adjustments. And I suppose that really when we started to dial it in, but we got to the point after six weeks and she went, you know what, he's just gonna be one of those kids, because everything we changed, changed something else. And the problem with Joe shift

Scott Benner 35:02
one of those kids by one of those kids, I think what she meant was, your kid's going to be one of those kids that I don't randomly get right. So you're screwed. And that's because they don't know because she didn't know what she was doing. Right. She was just turning knobs.

Anne 35:15
Yeah. And like, she was very experienced, and I'm sure she knew lots of stuff about diabetes. But for Xavier with his extra issues, it just, it just wasn't right. And she ended up saying to us, go to Nightscout and put in all of his insulin and food and all that sort of stuff and see what it suggests. Because it's more aggressive than I will be.

Scott Benner 35:47
I remember was that the website that are you think put it right into the app, or you think there was a website where you could kind of put in some of your, your information, and it would kind of spit out what it thought your settings were?

Anne 35:59
No, I like build the app and build his website. Yeah,

Scott Benner 36:03
do the whole thing. And then it'll tell you. Yeah, yeah. Well, that's not quite how that works, either. I feel like you know, you're describing like medical care is if you live on the edge of the world.

Anne 36:13
I know. It's ridiculous. Yeah.

Scott Benner 36:17
No kidding. It is. Yeah.

Anne 36:21
Yes. And then, of course, we've got we've got a pump that was brand new to Australia, and they sort of blamed the pump.

Scott Benner 36:34
That's the fault. It's great.

Anne 36:37
They didn't know about it.

Scott Benner 36:40
Yeah. Oh, no, anything they don't know about? It's, it's like, oh, I don't know, we don't know what that is, that's probably that thing messing up. We don't know, I can't say I don't have experience with etc. Meanwhile, how are you enjoying this time, like talking about how it feels personally, to be going through this with your kid.

Anne 37:00
I was really very, very, very demoralized, you know, and just so frustrated, and let down by the whole system. And just I felt very, very alone. And I think if I didn't have I hadn't had juicebox where I was starting to amass some knowledge, I don't know what I would have done actually, because it was the only place that I was getting any information about what I actually should be seeing and what I could be doing and what I end and giving empowering me enough to make really big changes with him.

Scott Benner 37:50
I'm glad. Did you dive into the Pro Tip series? Or did you go to the number one? Did you Oh, you're my favorite kind of listener. And thank you very much. We need all the downloads. And the best way to get them is to listen to all the episodes. But being serious. Well, actually, that I was serious about that. But being more being more serious. Did you find that just a little bit day after day added to your knowledge added to your knowledge? So you started feeling more comfortable? And then ideas started making more sense it just built? Is that how it goes?

Anne 38:25
Yeah, absolutely. And, you know, when when you're first diagnosed, they sort of say, Oh, well, you know, stay between four and 10. And you know, your ranges and do this and don't need but you know, don't correct after under three hours and all that sort of stuff, you get those rules. And it just wasn't working and to know what I should be seeing on my CGM. What was possible what spike would means, you know, if he went straight up at after he ate, then it was not enough insulin or my timing was wrong. Or, you know, if he was spiking two hours later, which unfortunately, he was, what did that mean? And was that normal? And, and, and through all of that, gradually information, I was able to go, This isn't right. What I'm seeing isn't right. And no matter what changes I make, it's not working. So what else is going on?

Scott Benner 39:28
Did you ever once you figure things out? Do you ever go back to the doctor and say hey, look, things are better. Now. This is what we did. Oh, yeah. Did they was their response, like, oh, yeah, we know that stuff. And it's good. You figured it out? Like we were trying to lie? No, they were surprised to

Anne 39:47
Yeah, and they go oh, what did you learn this time? Oh,

Scott Benner 39:50
okay. So you started turning into the person who listens to the podcast for the doctor then?

Anne 39:55
Exactly. I mean, I pay $500 for the privilege

Scott Benner 40:00
of recanting my podcast to a doctor what a deal in

Anne 40:08
bargain

Scott Benner 40:11
so what the guy say today? Hold on let me start the meter Well, that's terrible. A bit on your own. I imagine like, you know, or do you and your husband manages together or are you on your own a little bit?

Anne 40:28
I mainly do it he does it. But under instruction and he certainly isn't as attentive as I am.

Scott Benner 40:41
We're talking about him managing diabetes, right? Yeah, I said about married a long time to about how he handles everything. Is it just not? Not paying close attention and needs direction? Oh my gosh. I'm just trying to I mean, I'm paying in my mind I'm painting a picture like not for nothing. I'm not calling you old. But you're 47 ish years old when this is happening to you. You've already got you already got 1234 I mean, a lot of kids. You live in a I mean, a jungle right? Don't you live in a jungle? Yeah, that's right. Yeah, right. Right. Right. And so there's a lot going I imagine your job is just like collecting coconuts or something or I don't know exactly. Something like that. You sell boa constrictor skins or, you know, Oh, yeah. You probably own like an HR like outsourcing company or something like that.

Anne 41:38
But actually, we own an insurance underwriter.

Scott Benner 41:44
But it's mostly snake attack insurance. Is that correct? That's it. Yeah. Okay. And spiders, spider insurance, Snake insurance, stuff like that. Yeah, yeah. But so I mean, you're, I mean, I don't want to say you're later in your life. But you certainly at this point. I mean, you got five kids that were chugging along, you were kind of like, wow, this is easy, right? They come out one end, we feed them, they send them out, like, this is how it works. And now you have all this going on. And you're kind of doing it on your own. I mean, on a personal side, and then on a on a on a medical side, you're really doing it on your own, and everybody you search out in real life doesn't help you. Absolutely. Why didn't you give up?

Anne 42:28
Because of him, you know, it can't give up? You know, he had I had to find a way to give him a life because, you know, at that point, his childhood? Well, you know, his childhood has been stolen. He, it's just gone. It's all about his health and his ill health. And he doesn't feel good. And you know, We're up all night. He doesn't sleep very well, he, you know, I don't sleep.

Scott Benner 43:01
Yeah, it did feel hopeless at points.

Anne 43:05
Oh, definitely. Definitely.

Scott Benner 43:06
Did you ever have any anxiety or depression from it?

Anne 43:12
Um, I'm not that kind of a person. I sort of just get on with it. But there certainly has been times where I just you know, I think, truly, I think COVID probably saved us.

Scott Benner 43:25
Gave you a lockdown gave you time to think about it kept him at home.

Anne 43:30
And also, you know, the busyness of life. You imagine, you know, we spent a lot of time on the road, burying kids and kids were at three different schools.

Scott Benner 43:37
And yeah, it all went away.

Anne 43:39
It was all crazy. And it all went away. And they all were here. And we all sort of came in and just supported each other. And we're around each other. And I think that stopping and breathing again, probably was really good for us at the time.

Scott Benner 43:56
Right? Well, I mean, I would imagine when you when most of your life is spent running from King Kong, something like diabetes probably doesn't seem that scary. Really. You know, so Well, in

Anne 44:07
the beginning, that's how I sort of felt Oh, he's got diabetes. Okay. No worries, that's fine. We'll just get on with it. And I certainly have a look back and think oh my god, I can't believe how much I didn't know. And I would never have anticipated the journey that we've had.

Scott Benner 44:24
Well, you know, where you're where I think when I hear stories like yours, like the first time I think you're it's not lucky. It's it's it's um it's because it's not luck. It's kind of how people are built like some people hear doctors say, Well this is it and they go okay, well this is it. And they just they just agree and they move on. And if you had enough something to push back even in you're just in your mind at first so this isn't right like this can't possibly be right. Did you know any other type ones?

Anne 44:57
I have I have known typing. ones but I didn't know type ones. But they certainly came out of the woodwork. You know, I found people coming up and saying, Oh, I'm a type one did you not know? Or my sisters are type one or that sort of thing around me. But you know, it's like, I've heard you say, being a type one who's in your 50s or 40s, or 20s. Even is very different to now. Because treatments so different. Yeah. And his em have changed the landscape and pumps and all that sort of stuff. How long has

Scott Benner 45:33
g six is available in Australia now? Right? Oh, just just in the last month? Yeah. Just very recently on the PA just got there, but it's still it's not covered by your your health care system. Is that right?

Anne 45:47
Yeah, no, it's not covered at all. It's totally out of pocket out of pocket.

Scott Benner 45:50
They're still okay. What kind of pump did you get for him

Anne 45:57
is that he uses an Accu check solo, which is a tubeless pump as well.

Scott Benner 46:03
Oh, that's the I think I know this one. Hold on. I'm looking at it. Yeah, yeah. Okay. And it's got like a cartridges snaps into it. Is that right?

Anne 46:18
Yeah, it has what they call a pump base, and you put the cartridge in with the insulin, so you just load it in whenever you need it.

Scott Benner 46:27
How long does how long does the base stay on for

Anne 46:31
three months?

Scott Benner 46:32
Wow, doesn't get infected or anything

Anne 46:35
on Oh, no, it doesn't stay on the skin. So what happens is you have a they call it an assembly, but it's a base plate, which has got the cannula in it, and it sticks on to the skin. And then the pump clicks into that. So to have a shower, it just clicks out like it's a two second click out and click in. So you just take it off and change whatever you need and put it on how it works. Well,

Scott Benner 47:03
I'm sorry. Now that's what you're gonna say works. Well, code Fisher thought

Anne 47:08
works well for Zevia. Because we don't get any more than 24 hours out of the site.

Scott Benner 47:14
Okay, so the infusion sec, you have to move pretty frequently. And because of that, oh, and because and why do you have to move it so frequently?

Anne 47:26
Because he has, like a hyper immune response. So he's got insulin absorption issues as well. Okay. And it? The sites break down pretty quickly.

Scott Benner 47:38
They go bad after a while. Yeah, yeah, sometimes in 12 hours. So you sort of notice on his on his graph that the insulin is just not working the way you expect it any more than you move the site? Yes. Okay. Is that a diagnosed issue? Like do they put a diagnosis to that?

Anne 47:56
No, we're trying that's that's my current mission.

Scott Benner 48:02
That's what you need another mission. You're just trying to underwrite insurance and if you're busy get an amen.

Anne 48:11
Well, I've only just started working in the business. I've been a stay at home mum all this time. The last few months, but I'm actually homeschooling at the moment as well. So

Scott Benner 48:24
will tell me would you mind telling me a tiny bit about what lockdown was like in Australia? Because from an outsider's perspective, it seemed very rigorous.

Anne 48:34
Oh, it was, but it really didn't affect our lives very much. We didn't have a lot of COVID For a start, especially here in Queensland. And we, the kids stayed home from school, everybody worked from home, but we work from home anyway. So it didn't really affect our lives. The big thing was like extracurricular activities all got canned. And the hardest thing was finding supplies, like grocery stores and stuff, we just didn't have those supplies. So you really had to be like for us, you know, you could buy one bottle of milk and one thing of meat and all that sort of stuff, every trip, so I'd have to inbred was was you could only buy certain amounts of limited as well. So you can only buy a certain amount. So lots of things and rice and pasture and all that sort of stuff. So I'd be going to the shop slots, but only one person could do at the shops. You had

Scott Benner 49:27
to designate a person to go out. Yeah, it was me. At my house, it was me. And the first time I did it, I thought they had a meeting and decided I was expendable and that's why I'm the one being sent to the grocery store.

Anne 49:43
I don't know what they would have done if something had happened to me because I'm the one who does

Scott Benner 49:46
poor thinking on your side mind too, but you don't I mean, like at the very beginning of your COVID Like it felt like you were getting sent out like it felt like you were snooping trying to like cross enemy lines and you know World War Two like was that why Like yeah, like you went out I'm like, well this could be it. You know, I guess I'll go get pork chops and live through see if I can live through it. Anyway, I've never actually meanwhile, I've never had I mean I should knock on something but nobody here has ever had COVID so but okay so so that whole lockdown gives you time your life slows down a little bit. You don't you're not moving around as much you're able to spend more time paying attention to this new thing in your life and trying to figure it out ended up being a blessing really having the time.

Anne 50:31
Oh, absolutely, absolutely. And I could really build data so at the end of it I sort of went back to my doctor and went right I believe that he has delayed in delayed my brains gone digestion, okay digesting. And so we need to go to a gastroenterologist. So off we went. And she had some exploratory surgery and some testing some special testing done and got got got the diagnosis of gastroparesis.

Scott Benner 51:11
back quickly.

Anne 51:13
Yeah, pretty quickly, because I had the data to prove it. I can say like, because Mike because I work so hard on my CGM. I could go in and say, Look, this is where he's been. This is where he's being fed. This is where he's been injected. And this is what's happening. And so because I understood it, they didn't understand it, but I understood it enough to explain it and say, This is the proof that he's definitely something but got got something going on.

Scott Benner 51:36
So you were giving him insulin, he was getting low, and then much later needing the insulin. Yeah, they give you any, you know, it's funny, I was gonna ask if the doctor gave you an explanation, but after the last 45 minutes, I'm thinking what the hell do I care what your doctor said?

Anne 51:52
He was, I've never had a kid with gastroparesis before.

Scott Benner 51:56
I imagine that's the answer you get about everything. Like aspirin, I don't know where to buy those. Good luck. I mean, because I mean, your son was an undiagnosed for a very long amount of time. Like how does like how does something like that come on so quickly?

Anne 52:14
I actually think he had it first. Really, sorry, apparently can just get it to no reason they call it idiopathic gastroparesis, because for Eric in 18 months before he was diagnosed, and it could have been, he could have had the beginnings of diabetes. Even then it could have happened together. He started having all sorts of Gi problems and and, you know, we went to the doctor and they went, I just constipated and give him stuff. And you know,

Scott Benner 52:48
can you describe those problems a little bit for me?

Anne 52:52
So he always felt sick. He'd say, I feel like I've got acid burning. And definitely, you know, toileting issues.

Scott Benner 53:04
constipated, like constipated, diarrhea, and back and forth again, stuff like that. Yeah,

Anne 53:09
yeah. Yeah. But his teachers had also approached me and said, you know, he says, I would give instructions and he's just staring into space. And it takes you know, you have to refocus him on whatever and, you know, maybe he's got maybe he's on the spectrum or something. I mean, he's normal spectrum. I have a child on the spectrum. He's not on the spectrum. But looking back, I think probably he was having hypose and I was hypers for a long time before we ever thought about diabetes.

Scott Benner 53:46
Okay. It's interesting. Idiopathic gastroparesis, upon the three main causes of gastro precice diabetic post surgical and idiopathic. Patients with idiopathic have a constellation of symptoms, including nausea, nausea, vomiting, early, hold on early satiety.

Anne 54:09
So it feels full quickly. Yeah,

Scott Benner 54:11
satiation right post pragnell, fullness and in some patients upper abdominal pain. Interesting. How did they diagnose it?

Anne 54:20
So you do a radio, you go in and you eat a radioactive meal, and then you have a series of scans over four or five hours, so every hour for four or five hours and they because digestion is supposed to be fairly predictable and found that he has still had a significant amount of food in his stomach after all that time.

Scott Benner 54:46
Is there a way that it's treated? Is it with diet or how do they help him or can they not?

Anne 54:51
So they at the moment he has a he has a special laxative he has something for us Ah, and he has a really low dose, special antibody every day.

Scott Benner 55:06
Okay, what's the antibiotic though?

Anne 55:10
motilium is the one he takes

Scott Benner 55:17
second motilium

works by blocking the action of a chemical messenger in the brain which causes the feeling of nausea and vomiting. Okay, so that helps with some of the side effects of the, of the gastroparesis. Yeah. Are there any foods that he tries to stay away from? Or does it not matter?

Anne 55:49
Anything that's good for diabetes isn't good for gastroparesis.

Scott Benner 55:53
No. Perfect. So, like beef? No.

Anne 55:58
I mean, he, he's a very, very, very fussy eater. So he's very limited to what he will eat. So that sort of doesn't help either. But you know, nothing, high fiber, nothing. Really hard to digest nothing. You know, they like easy, simple, quick digesting meals that have got not a lot of bulk in them is what I say. They prefer, which obviously, is really hard, because diabetes likes it the other way around.

Scott Benner 56:28
Yeah, that's interesting. I'm sorry. It sucks to hear that. How does he deal with all of this?

Anne 56:37
At the moment, not very well. He, which is why he's he's we've taken a term off school to try and just give him a rest from all of the stress because schools really, really hard on him. He has, on top of everything else, he has a lot of different reactions to things. So he doesn't have the general wake up and blood sugar rise, adrenaline drops his blood sugar. So as soon as he gets drives through the gates of school, his blood sugar goes through the floor. And we spent all day he spends all day eating to the point where it goes, I don't want it any more food. Okay. And then as as it's getting close to time to come home, all of that food hits skyrocket.

Scott Benner 57:33
So have you tried, have you tried eating some uncovered food prior to school?

Anne 57:40
Well, that's the hard part. Because breakfast is of course, horrible. And you have to give him a good work of insulin to cover his breakfast. Otherwise, he's sky high.

Scott Benner 57:53
And then if you don't, then he gets low. Yes, there's no no winning really?

Anne 57:59
No, there's not really any winning. So we really have to, you know, we really, I live by stay flexible. i The arrows are really, really important for me, if he wakes up, you know, he can make up in range. But if he's arrows down, he will get his insulin over half an hour. But if he's arrows up, he will probably get it by injection.

Scott Benner 58:29
Hmm. Wow. Seems like a lot. Are you okay?

You had five and five, you were good.

Anne 58:47
I know. And I was just getting to the point where I was like, Hey, I'm gonna get a life again.

Scott Benner 58:51
Yeah. Was it really worth the one last time you had sex? Because I'm assuming that was the last time and I would have given up after that. I'd been like, I can't believe we got pregnant again. It's over now. We're not doing this anymore.

Anne 59:06
Oh, yeah. He was my sweet. He was the sweetest little boy. And he was really, he's just I used to say, when he was little that he made my soul sing. And he just, he just was I was just everything he we were such. Yeah, because he was the only one that I ever had on my own, you know? Yeah. Just

Scott Benner 59:31
feel feeling like because all the other ones were just a little older. Right. And it was sort of like, he got the focus. Well, and I'm sure he's still delightful, right? There's nothing

Anne 59:41
he's, he's diabetes has definitely impact his personality. And, you know, he is he is sweet when he's good. But I Oh, he's he can be difficult. You just

Scott Benner 59:57
described Arden's mother. There you go. That's I'm sure he's not just married to me.

Anne 1:00:07
I'm sure my husband would describe me as.

Scott Benner 1:00:10
Yes, she's great when she's okay. I mean, I don't know what the hell happens the rest of the time. I'm sure that's how people describe me as well, by the way. But i Wow, it's really a hell of a story. And it really is what made you want to come on?

Anne 1:00:25
Um, you just put a call out one day on Facebook to say, I've got some spots. Does anybody got a story? And I thought I will. ALS is a bit different. So

Scott Benner 1:00:36
certainly is yours is the only one with giant spiders. Actually, that's about to happen again, on the pod. I'm getting it's may now. And I'm getting ready to open up the 2023 calendar. Wow, I'm booked like straight through 2022. I think I'm I think I'm booked into like February of 2023. Because I had to open up the front end of the calendar to start like, sometimes I hear from people, I'm like, I definitely want to interview you. Can you pick a spot at nine, nine months in the future? Like you'd be surprised? I always just, and if I'm being honest, when I send people those emails, my expectation is that I'm going to get an email back that goes, how about you go off, but instead? Instead I get back? Yes, sure. Great. I grabbed February 23. I'm fairly excited. I'm like, Oh, my God, thank you. I'm so grateful for how like, amenable people are when they're making the, you know, they're making the recording time. So it's really cool for you to do this. Thank you, especially with the time swing is just terrible. And I'm not wrong, right. We messed this up once, didn't we?

Anne 1:01:44
Yeah. Right. And we organized it a couple of times before.

Scott Benner 1:01:49
But I was sitting here and I'm like, she's not here. She thinks this is tomorrow. And we're something because because the time zones are so far off like it's Friday for me, but it's Saturday for you. Is that right? Yes, it is. Yeah. So that gets confusing it by the way, not the first time that's happened, trying to record trying to trying to record you don't have to feel bad trying to record with Australia. It's gone wrong a couple of times, I actually have one coming up in a few months from China. And I keep thinking like, Oh, I hope that doesn't get messed up. But it might you know, because it's confusing. I will pay more attention in the future. I should have sent you an email a little sooner. And we could have talked but

Anne 1:02:29
that's okay. I was glad that you sent me one yesterday and said right, this is the right time.

Scott Benner 1:02:35
Well, I figured let's not mess it up twice. Just let you know, tomorrow at 330 My time, etc. No, seriously, it's really it's lovely of you to do this. I'm sorry to hear that he's having such a tough time. And I mean, there's a couple of things going against them here for sure. And one of them is that he's not getting, I mean that his mom's having to figure this out through the internet is not it's not it's not great news, you know, especially if stuff like this should progress a little bit or even even just for your comfort, like how do you even know when you're doing something? Like for the gas, your prices as an example? Like how do you even know you're doing the right thing, because you're taking this advice from people who let you down so many times already.

Anne 1:03:20
I always take it with a you know, I'll try that and see how it goes. approach. And, you know, because I feel empowered, and I you know, I know that I know more than they do. So I'm gonna change things up.

Scott Benner 1:03:42
Let's hop on them. Well, you're tough lady. And it's it's a very, very laudable personal trait to be able to push through when you're getting bad advice and come out the other side and figure something out for yourself. It's a it's a really big deal doesn't sound like you ever flinched, like when you got bad advice. It sounds like you just kept kept hammering away. I'm thrilled that the podcast was helpful to you. It really is.

Anne 1:04:06
It really has saved us really has

Scott Benner 1:04:09
a really it's wonderful to hear it. Certainly. I especially because you're you're so far away. You know, I know that sounds strange to people, but I'm old and I know the internet reaches the whole globe. But to me it's even crazier that you're in Australia, you know? So yeah, absolutely. For sure. I want to make sure we have have we haven't left anything out or anything like that. I don't want to cut you short, but if I'm being honest, my car was being worked on today and I have a limited amount of time to get to it. I won't be able to have it over the weekend. So I have to get but I just want to I don't want to rush you off. I still have time. I just want to make sure that we've not missed anything.

Anne 1:04:51
Yeah, um something that we've been trying lately and it's only been because he's having so much problems like we still his variability is all over the place, we haven't got to the point where he is a state stable at all, you know, some days he's really low and some days he's high. Once he goes high, I know how to get him down. And he can have an extraordinary amount of insulin. And like, you know, double, triple sometimes and it just does nothing for hours and hours hours, and then he could have a delayed reaction. It would be the next day that it all hits and we face all those lows. So we actually use glucagon instead of food a lot to get him up in micro doses. Yeah.

Scott Benner 1:05:47
Do little micro Bolus is of glucagon. You know what I was just wondering, as you were talking, and this is just happenstance that I had to record twice today, which I don't normally do, but the person I spoke to earlier was talking about a trial that her daughter's in for a Frezza for the inhalable insulin. And I'll tell you, she just talked so glowingly about how those sticky high blood sugars come down and 15 minutes with a Frezza for her daughter. Wow, made me think of it made me think of a decision just said that. So is that available there?

Anne 1:06:19
No. No, it's it's a very long process to get anything approved here. It's really very frustrating. And everybody in the medical world just seems to go oh, you know, we're a couple of years behind everyone else. I think it's not good enough. You know, we get the latest phone as soon as it's released. Why can't we have medical technology as it's released?

Scott Benner 1:06:46
I get an iPhone right away when it comes out. That's not helpful for anything. Exactly. That's it. I wonder if you could buy it. Cash Me, maybe it could, but I don't know how much it would be? Well,

Anne 1:06:58
I'm gonna be pushing them because we have done this trial with glucagon. And like I've used in the last month, 14 vials of of glucagon. So, you know, lots of people say, you know, I've never used it in my life. I use it regularly at night. I never give him food anymore because foods just not reliable. You know, I can't guarantee when it's going to hit. Yeah. And he he could sit at low on his, like, it shows as low on his CGM for an hour, two hours.

Scott Benner 1:07:33
And there's nothing you can do. Except this. But glucagon does work.

Anne 1:07:38
Glucagon does work it's not as quick as as you expect. It's not like a 15 minute nap you go sometimes it's half an hour sometimes it's three quarters an hour before it hits, but it does it is much better and then I don't have to deal with the food hitting at some random time later on.

Scott Benner 1:08:02
Do you do you ever get into a situation where nothing works and you feel like it's an emergent situation you ever end up in a hospital for this?

Anne 1:08:11
Luckily, we haven't. But then I I sort of see other people's posts online and you know hospital emergency departments don't really know about diabetes either. So going in you know they put them on a drip or they give them insulin anything well you don't really know anyway, so I just keep them at home and just keep working it give me more glucagon or giving more insulin you know making take a hot shower.

Scott Benner 1:08:43
Has he ever had a seizure from from a low prolonged?

Anne 1:08:47
He hasn't. But I think I think and that's part of the problem that we're trying to get to at the moment is that I go a lot on how his how he's reacting to me. So if he's talking to me and he's functioning at a higher level and he's able to do everything, I think okay, well that's hid in his brain, it just hasn't reached his extremities. So I think there's a circulatory issue as well. And it's just takes time to get to the outer bits and he can only wear his devices on his arms and his legs because his torso justice too active. Yeah. And even a finger stick. It takes a long time to come up because we do do one every now and again. And but if he's talking to me, obviously he's laying on the lounge and it's semi conscious or whatever. I'm much more aggressive with things. And I have come close to calling the ambulance but I have never actually got there.

Scott Benner 1:09:56
I don't know how you're living like this and you sound like you're either I don't know, like you're not either you're not human, or you're Are you medicated and you? How are you staying even keel during these things here, something taking the edge off, you can tell Scott drink a lot. Hey, he's gonna pass out, I'll have a beer while we're waiting. And I mean, it's a lot of pressure, but then you describe yourself as not a person who feels anxiety or depression.

Anne 1:10:30
And I certainly there are times where I feel down in the dumps about it and feel very low about things. But I tend to pick myself up and just, you know, you just got to keep going. There's nothing you can do. And I think the busyness of our lives is that you don't have time to indulge in that.

Scott Benner 1:10:51
Yeah, that's impressive. It's an impressive trait. It really is. To not give into it and to not be knocked over by it is really something I mean, especially we mean, these are two things you're talking about, they're not gonna go away. If they're not exactly, they're not flexible. So, I mean, the gastroparesis is either going to stay the way it is, or get worse. Yeah, you know, the diabetes. I mean, you know, I mean, we can all hope for a cure. But even if we get one, right, show, you won't get it for five years later, anyway.

Anne 1:11:25
Exactly. That's right. You know, things come out, I find that really hard, you know, things come out. And I'm, I'm on top of what's what's happening in the world. And, and, okay, you know, when Winter's coming out when we're getting it, and you just go, oh, well, two years down the track, I can't get back.

Scott Benner 1:11:41
Every time something happens with any of the companies that I do business with, I get messages from people, please tell them in Canada, we're waiting, please tell them in Australia. When are you coming to here? You know, like, it's, I think you talk to them privately. And they're like, we're trying like, you know what I mean? Like, it's, it takes a lot of staff and a lot of money and like to get law, you almost have to open new offices. And you know, it's it's a big undertone.

Anne 1:12:05
I know, it's crazy. And even with his pump, I said, every every time I renew it, because you sort of renew it every 12 months and say, Okay, tell me about, you know, we got plans for CGM. Have you got any you know, I want I want an algorithm because I think that would really make my life easier

Scott Benner 1:12:24
has made me wonder while you're talking, especially because I just had a meeting today with Omni pod were I you know what? And I'm going to tell you something, and you just don't tell anybody else. Okay. Okay. And because this will come out so much later, it won't matter. But okay. I, I suggested to on the pod. And we're going to do a small series of instructional episodes about on the pod file. Awesome, right? And the reason it made me think of it is because this, this algorithm of theirs is really a learning system like it, it takes from what happens before and makes different adjustments. And I did wonder, I wonder if it couldn't figure out the slow way that your son's I mean, like, I'm just guessing here, but I wonder if it couldn't find a pattern in his digestion? Do you know what I mean? And like if that, because that, because if it could, and I have no idea if it could or not, but I'll tell you right now, I made a note for myself to ask somebody. I, it would just be such a blessing if like, it could even just help you a little bit.

Anne 1:13:29
Oh, absolutely. Yeah, absolutely. And, you know, when we did do the Nightscout, we learned a lot about it. That, you know, putting in the stuff, you know, that we had never ever even thought about taking doing a zero rate or doing a 200% rate or whatever. And that's all we use. Now. It's either zero or 200. And he's got crazy Basal rates that go from like point one to 3.8 during the day. And

Scott Benner 1:13:58
so no Nightscout sort of teaching you how to think like an algorithm, right?

Anne 1:14:03
Yeah, yeah. So then I'm the I'm the one that's done all the changes that it's sort of saying, we don't do it all the time. But we do do it occasionally. If I think I really lost I think we need to go back and have another look or whatever. But generally, we just you know, stick with unless something's really coming up saying this is a pattern. We just have to stay flexible and deal with whatever's happening at the time and if he's you know, low return is Basal rate off and if he's high, we turn right up. But also he can only have this as another crazy thing. He can only have two units straight up through his pump at a time. So if he's having a big Bolus, he gets a bone injection.

Scott Benner 1:14:54
I say, Wow.

Anne 1:14:56
I need that we need the pump. Definitely for basil because you Yeah, and injectable one doesn't work. But he doesn't always get his boluses through for food through his pump.

Scott Benner 1:15:08
I see. But you absolutely have you need the power of shutting off the basil and doubling it up that absolutely. It's interesting like you took the more fringe aspects of how I talk about diabetes, and they're your main management ideas. Oh, absolutely. So cool. Absolutely. Yeah. Absolutely

Anne 1:15:27
lost without them.

Scott Benner 1:15:28
I didn't mean to speak over that. If you were gonna say something nice about the podcast, let me be quiet. No, no. Thank you. No, I mean, I just think you're talking about some of the bits that are a little more like, oh, once in a while, you might need to bump it this way or that way or shut your basil off or something like that. But it's a it's a big part of your day.

Anne 1:15:48
Oh, it's Yeah, absolutely. Crazy. Absolutely.

Scott Benner 1:15:52
Very crazy. Well, I'll tell you what, in those birds did not stop the entire time. i At the beginning, I found a YouTube channel that has like a video of them. And I thought oh, it'll be fun. Like I'll play play it again at the end. Except nobody needs to hear what it sounds like. Because they were just going the whole way. No, I found that I actually found that to be nice. I felt felt like it felt different, which I enjoyed. I do have to go though, but I want to thank you very much for doing this. Oh, thank you. It was it was a pleasure to talk to you. Oh, you as well.

A huge thank you to Anne for coming on the show and sharing her family story. And thanks to those birds. Or they call it again. Cuckoo cuckoo. I don't know. I'll make it the title coupe Carrera. Who could I don't know cuckoo cuckoo baby. But there's a preference no one's gonna get. Thank you so much for listening. Don't forget to check out the private Facebook group Juicebox Podcast, type one diabetes, find those series that you're looking for diabetes pro tip, and on and on. They're all there. They're in your app. If you're enjoying the podcast, please consider leaving a five star rating and a thoughtful review. Wherever you listen. Thank you so much again for listening. I'll be back very soon with another episode of The Juicebox Podcast.