#997 Oh, Canada

September 13, 2023Scott Benner

Roisin's child has type 1 diabetes and celiac.

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Scott Benner 0:00
Hello friends, and welcome to episode 997 of the Juicebox Podcast.

Today I'll be speaking with Rasheem. She is the mother of a child with type one diabetes and celiac, they are from Canada. And my note to myself says that I go on some sort of a rant during this episode about people not doing their job. So that'll be fun. 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. You can drink ag one with my link drink ag one.com forward slash juice box. First time orders through the link get five free travel packs and a year's worth of vitamin D with their first order. You can save 40% off at cosy earth.com With my offer code juicebox that's off of everything. And of course if you're looking for Dexcom on the pod us med G Bo Capo pan are all the sponsors. The links in the show notes are a great way to support the podcast links in the show notes links at juicebox podcast.com. And don't forget to check out the private Facebook group it's absolutely free has 41,000 members Juicebox Podcast type one diabetes links also in the show notes this episode of The Juicebox Podcast is sponsored. You hear that thunder? Can you hear that? Hold on. Oh, Scotty is in trouble. I better do this quick. This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod five and the Omni pod dash. Learn more Get started today at Omni pod.com forward slash juice box when you use my link, you're supporting the show. The podcast is also sponsored today by the Contour Next One blood glucose meter contour next.com forward slash juice box. The meters are available right there on the website actually the test strips as well. The reason you might care about that is because the contour brand of meters and strips may very well be cheaper in cash, like over the counter out of your pocket than they are through your insurance. Check it out at contour next one.com forward slash juicebox.

Roisin 2:32
My name is Ray machine. And I live in Canada. And I have two kids who are six and eight and my eight year old. I'll use his first name David. He has type one diabetes and celiac disease. He got the celiac diagnosis in February 2020, like a couple of weeks before the world shut down for COVID. And then he got the T one D diagnosis literally a year and three days ago. So January 2022.

Scott Benner 3:03
Thank God you said your name. Because yes, I know. Not spelled like that at all. No,

Roisin 3:09
that's that's that's Gaelic for you.

Scott Benner 3:12
Say it one more time for me. Rasheem got it? Yeah, I'm never going to look at where it's typed out in front of me. I'm just confused here. I mean, what's the most common mispronunciation rows? I

Roisin 3:28
get Roizen reason a lot. And I also answer to reason. Because if you change the O to an A is that that was a fun thing to grow up with in Canada.

Scott Benner 3:41
I'm just a pair of reading glasses away from calling you rays. And aren't I? There you go. Yeah. And in Canada. And you were born and raised?

Roisin 3:52
No, I was born in Ireland. But I moved here when I was six years old. So I'm Canadian at this point, essentially.

Scott Benner 3:58
Well, I was gonna say you're you don't have almost nothing accent. Yeah, yeah. So I thought maybe just that you were born there. But I mean, six is pretty young. So yeah. Okay, well, that explains all the autoimmune stuff. And

Roisin 4:13
yeah, exactly. Exactly.

Scott Benner 4:16
I don't know if we can move the sun towards that part of the world or something. But I

Roisin 4:20
think I don't know. We need some help. I don't know. If we could

Scott Benner 4:23
maybe in a couple of centuries. Wouldn't be going like this. Maybe. Okay, so how about in your family line? Any other autoimmune stuff? Oh, yeah. Oh, yeah. We

Roisin 4:33
got a few. So on my dad's side is aunt we believe she had celiac disease. But like this was a million years ago and I don't know what they would have even called it celiac disease. But she lived on a farm in rural Ireland and had to like ship special flour in to bake with because she couldn't eat regular flour. So we think that was celiac. And then his uncle had type one diabetes, but he died in the 80s before I was born, so I don't know how he managed it. And then my mom has celiac disease, but she wasn't diagnosed until her 40s When I was about 20. And I never knew of the connection to type one diabetes. But then when my son started having some like abdominal problems when he was five, my brain just kind of went, Oh, celiac, I should get them tested for that. And I called up the doctor and she was like, oh, it's probably not like, you're probably being a hypochondriac, but fine, fine, we'll test them. And then she called me back a few days later, and she was like, his numbers are off the charts. It's definitely celiac. You got to go gluten free right away. So that's, that's how that went?

Scott Benner 5:51
Well, I mean, honestly, good job. figuring it out so quickly, and not ignoring things that were obvious which a lot of us do.

Roisin 6:00
Yeah, well, if my mom wasn't celiac, I never would have. I never would have thought of it or known about it or whatever. So

Scott Benner 6:07
well, yeah, I know. But I've spoken to enough people whose like, siblings have diabetes. They're like, I didn't realize I had diabetes for Yeah, yeah. So it's interesting how your, your mind will want to lead you away from things you don't want to happen, you know? So

Roisin 6:22
absolutely. Yeah. And actually, I only found out recently, I had something when I was a kid called hen. Hanok shanling Pure pura. And I always knew I'd had it when I was a toddler. My parents have told me that it was in the hospital and stuff. I only found out recently that that is autoimmune. So I had something autoimmune, but I didn't realize until literally two or three weeks ago that it was autoimmune.

Scott Benner 6:47
So you made that up, right? What is that again?

Roisin 6:50
No, I know. It's that called hanok. It's h e n o c h and then Sean Lean is SDHONL e i n. Pure pura I got it. P U RP. You are You got it? Yeah, it's a IGA vasculitis. So it's an auto immune response. I had the mumps when I was just just before it turned two. And that was my auto immune response. But I didn't know my parents didn't know like I told them recently that that was autoimmune. And they were like, Oh, gee, nobody told us that. So don't even knew maybe they didn't know back then it was autoimmune because this this would have been like 1984 or something. You know,

Scott Benner 7:30
did they ever call it spring fever? I've never heard that. No, a disorder causing inflammation and bleeding in the small blood vessels. I don't even want to try to hanok I mean, what's the word the middle there's two dots over now affects the small blood vessels of the skin, joints, intestines and kidneys. It's most common before age seven, but can affect anyone symptoms include reddish purple spots on the lower extremities, swollen and sore joints, abdominal pain, and bloody urine. It's often often treated with steroids. Do you remember having it?

Roisin 8:07
No, it was like it was before my second birthday. Before I turned to

Scott Benner 8:12
my parents. Do you remember that? Yeah,

Roisin 8:14
exactly. My parents said basically, one morning like I was the kind of kid who used to come and wake them up at 5am every day. And one morning, they woke up and it was like seven and I hadn't woken them up yet. And they came to my room and I was just sitting there and they're like, What are you okay, like, what's wrong with you? And I was just like, oh, I can't walk. Like I can't walk anymore. And it because it causes it can cause like arthritis and stuff. Yeah. So I basically hurt too much to walk. But you know, being too I was just kind of like, oh, I guess I guess I can't walk today.

Scott Benner 8:43
Yeah, you guys can't spell and I can't walk. So there we go. Oh my gosh, how long was that lasts for?

Roisin 8:52
I think it was in the hospital a couple of weeks. No kidding. Yeah. I mean, back then they kept people in the hospital way longer to so. I don't know. But, you know, once it resolved, it was done and I never thought about it. You know, nobody ever really thought about it again. It's just like a funny family story. That time rushing couldn't walk for a few weeks

Scott Benner 9:12
is everyone remember the hilarious time the baby couldn't stand up? And it's your second and it's autoimmune?

Roisin 9:22
Yeah. About that. Yeah. Okay. I literally found that out. Like since Christmas. I found that out. And it blew my mind because I always figured the auto immune had skipped me and gone to my son. And then I found that it was like, oh, no, it's it's a direct link. There we go.

Scott Benner 9:38
Well, we're gonna add that to the list. I'm doing a series of a master list. Yes, we're doing a short series of other autoimmune issues. Nice. Just that an explanation. They literally might be, you know, 10 minute conversation, right. But yeah, just you know, as people come on, the more common ones are or become obvious like I used to hear like mobile thyroid and type one. And that's it. And then, you know, through the podcast, it was celiac as well. And then, you know, like, now I'm starting to hear more people talk about like, depression, bipolar stuff like that. And right, just thought like, I wonder what else people have that they would never relate back to this inflammation and autoimmune correctly anyway. Well, in you've had never had any other issues. No, about that. No. All right. So your son, David, he's diagnosed celiac first? Yes. And it's two years before stomach stomach pain, you recognize that take him to the doctor. That's that? And do you think after that, oh, he's gonna get more autoimmune stuff? Or does your brain not work that way?

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Roisin 15:09
No, I had no idea the links, but I have to like I had we had an amazing gastroenterologist. We spent a year sort of on the program at our local kids hospital with gastroenterology, you know, when we went every few months and checked his levels and made sure we were managing the gluten free diet and that kind of thing. And then literally like a year later, we did really well his numbers were off the charts. At at first is number they give you like a value greater than value. So his numbers were at 4975, like greater than huge. And then a year later, his numbers were at 21. And basically, they want you to get it to 20 or lower. So we were doing great. But the last thing she said to us before she sort of discharged us to self care. She was like, Oh, by the way, there's a link to type one diabetes. So if you ever noticed a, b and c, make sure you check on that. And I just kind of went oh yeah, whatever. Okay.

Scott Benner 16:07
Just beat celiac disease. So I'm just gonna leave. Yeah, in triumph if you don't mind. Yeah,

Roisin 16:11
exactly. Exactly. Yeah, all

Scott Benner 16:15
this was handled with just diet, right? Like you got from that big number to that smaller number through diet. How difficult or not difficult was it for David to make those adjustments.

Roisin 16:26
So he was only five, which I think helped I, you know, I hear about people getting diagnosed celiac when they're like 14 or 15. And they've had a life of eating, you know, Domino's Pizza, or whatever. And I think that's different, that five years still sort of micromanaging their diet. And also that was like, That was literally a few weeks before the big COVID locked down. So we and where we live, we had some of the strictest lockdown policies anywhere. We basically spent the next two years like preparing all his food. Yeah, so that kind of really helped. He was a pretty he's a superstar about it. Like, once we found the few staples for him, we found you know, some breads that he liked some cookies that he likes some cereal that he liked. We all just um, I like to cook and stuff anyway. So I was always, you know, making meals from scratch and that kind of thing anyway, other than eating out? I didn't find it. I don't find it much of a challenge.

Scott Benner 17:20
Okay. Did the whole family adjust, or

Roisin 17:25
we're kind of I would say we're probably 80 to 90% Gluten Free at home. I changed. We don't we only have gluten free pasta. We only buy gluten free snack foods. We eat a lot of Whole Foods anyway, like just fruit, vegetables, cheese, meat, that kind of thing. He has his own bread and his own toaster. We do have gluten bread in the house, just because I have six and eight year old boys who never stop eating bread. And his loaves of bread are $6 plus a loaf. You know, there's a few little things like that, that we do have gluten in but for the most part, we're pretty gluten free. I would say

Scott Benner 18:01
Yeah. How's the healthcare system in? I don't know, like, just generally speaking, but part of Canada, you were in Ontario. Okay. There's so interesting. Like, there be some people in some parts of Canada who are like, you know, I needed to go to the doctor and it took nine months for me to get an appointment. And then there are some people who have stories like yours, like, oh, the doctor, bah, bah, bang, bang, bang, you know, like, it's, it's super interesting, but it's by province, right? Like, that's how the

Roisin 18:29
province and even even region like Ontario is kind of, we're kind of a weird province because we have some of the most populous cities in Canada. But then the northern parts of Ontario are like very rural and very sort of, you won't have the same access to services and stuff. So I'm lucky I live in a major city. You know, the children's hospitals a half hour drive for us. And I'm lucky that we have a family doctor have a long standing family doctor. Now there's like a big doctor shortage. So if you don't have one, it's really hard to get on a caseload somewhere.

Scott Benner 19:01
Yeah, yeah, we took away the we took away the possibilities for doctors to be rich and a lot of greedy people were like, I don't want to be doctors anymore.

Roisin 19:10
Yeah, and I think the pandemic is just burned out a lot of them too. And they've gotten out of out of the practice or gone to places where they can make more money.

Scott Benner 19:19
Fascinating isn't like, I don't have a job where I can just go like, I'll just go me to go do something else now. I wonder what that's like, I don't wanna do this anymore. Like not that maybe they didn't have a good reason. I'm just saying like, Oh, yeah, an amazing ability to be able to like, I'm just gonna go do something else now. Like,

Roisin 19:35
I'm gonna pick up and leave now. Yeah,

Scott Benner 19:37
I had somebody asked me the other day like, you know, if the podcast like just collapsed, would you start another one? I was like, you know, I was like, This is a once in a lifetime thing that this work delegate just you don't just go make another one. And people are like, Oh, okay, well, we'll make that one to your next one. We'll make that one popular too. I'm like, it doesn't work that way, you know, but yeah, like that. It does sound nice. Though like, I don't want to be a doctor anymore, I'm gonna do something else. Anyway, the reason I asked about that is because once David's diagnosed with type one, I'm wondering if they went right into fast acting, you know, insulin with?

Roisin 20:15
Yeah, no, that's like I have that on my list of things I want to talk about.

Scott Benner 20:20
So what's the first sign of type one? And when you saw it, did you think oh, that nurse jinxed us?

Roisin 20:27
Yeah, maybe. No he. So school was shut down for COVID at the time when his symptoms started coming up, which, like, in a way was a blessing because I was with him 24/7. And so I really got to, I saw the progression, you know, he was doing online school at the time, and I'm a stay at home parents. So like I was supervising him and my other kid, they were, you know, in different rooms on their iPad, and I was making sure they had snacks and drinks and they were paying attention to their teachers and all of that. And he started like, going to the bathroom all the time, and refilling his water bottle all the time. And my husband and I were just like, David, get back to class. Like, we know virtual class is boring, but like, you have to do it, just do it. So stop, stop trying to get out of it every five minutes for a drink of water or a bathroom break. And that's all we thought it was at first. And then he was also just eating like, ridiculous amounts. And he's always been a big eater. But like, I started taking pictures of his plates and sending them to my friends and being like, Haha, growing boys, look what he can eat. He's only seven. And then you know, a couple little things started clicking. And I remember that conversation, I'd had it discharged with the celiac. And I was like, oh, no, like, this can't No, this can't be it. And then I actually I have one of my best friends. Her daughter has type one, her daughter who's the same age as my son. But she was diagnosed at four. And I was texting her and I was like, I don't know, what do you think? And she was like, why don't you just come over and use my glucometer? And you know, like, It's probably nothing. But we'll check. And then you'll know. And I was like, yeah, yeah, let's do that. So I brought him over one Saturday morning. He just had pancakes and maple syrup. And we practice finger and it just read Hi. And my friend and her husband, they both kind of got tears in their eyes and just looked at me and we're like, yeah, we gotta go to the hospital. And that was that. Yeah,

Scott Benner 22:27
to get that maple syrup right out of a tree or to buy in a store?

Roisin 22:30
No, I am not very handy that way. I'm straight from the grocery store.

Scott Benner 22:37
Oh my gosh, it's it's hard to hear that. Or I guess. Like I put myself in your position. But it it must have been difficult to see them get upset.

Roisin 22:48
It was Yeah. Yeah, they both. Yeah, they both tear it up right away. And I was just like, oh, gosh, I know. You know, I'd seen my friend go through it. So I knew it was hard. But you don't know how hard until it's you?

Scott Benner 23:02
Yeah, I was just gonna say that. I was gonna ask the question like, did you? Do you look back now and have more context for the sadness that they had? Or did you? Oh, my

Roisin 23:10
God, like, a couple of weeks later, I messaged her. And I was like, I'm so sorry. I wasn't there for you more like, I'm so sorry. I didn't come and like, I don't know what I could have done, like cleaned your whole house and done all your laundry and taking care of your other child. I'm so sorry. I didn't do that for you. Because now. Now I get it.

Scott Benner 23:28
Yeah. Well now. Because now you're looking at your laundry. And you're

Roisin 23:33
like, I need someone to come do this for me because I was up all night with a low blood sugar. You know,

Scott Benner 23:37
I remember. I remember the moment. I'm so much older now. But I remember the moment when you make that decision in your head. You're like, okay, laundry is not always going to go from the hamper, through the system and right back into drawers. And we're all going to be okay with that. Yeah, exactly. We're all just gonna be okay with that. My wife have enough clothes. My wife fought the longest. She's like, they can't lay around like this. I was like, Oh, I don't know what's gonna happen to happen. Yeah, come up here and do it yourself if you want, but that's about it. Exactly. So David getting a second diagnosis him differently than the first one.

Roisin 24:17
You know, in a way, I think having two years of knowing he had celiac and something that was different than most people in his life, that it almost like laid the groundwork for diabetes. Like he said something in the hospital ER that just like it broke my heart. It was the cutest thing. The doctor sort of said something to him like, like when he was being diagnosed with type one. Like, oh, are you okay? David? Like how do you feel about this? He's like, Well, now now I have to find a cure for celiac and type one diabetes. I was just like, like my heart broke, you know to hear him say that but it was very cute.

Scott Benner 24:56
Does he wants to do something scientific.

Roisin 24:59
Oh, I don't think you know, I think he could do what he wanted he just played Roblox and Minecraft all day but he's got lots of interest yeah

Scott Benner 25:08
don't worry I watched my 22 year old son break up with baseball in his head this year and it was took a while yeah so just between you and me he'll never hear this does he have a scientific mind so far you don't think so?

Roisin 25:21
Oh yeah no he's He's pretty good at science and math and stuff I think if we want if he wanted to go that way probably good all right,

Scott Benner 25:28
well then let's put him on it I don't know what we're busy with this Roblox is that what it's called Roblox? ROBLOX Yeah, we did I make something else up or no did actually exist? Yeah,

Roisin 25:40
it's it. Don't Don't even bother. It's you don't need to know. Consider yourself lucky that you're not exposed to the world of Roblox.

Scott Benner 25:51
Listen, I just again to show my age. I was Rolie polie. Olie bear in the Big Blue House. The Little Einsteins, like this is the stuff my kids saw on television when they were younger. Something called out of the box, where these two people who appeared to be captives of the television production crew were forced to sing with children. And oh, I always assumed they didn't want to be there. I thought oh, I guess they're paying them. But they they look like captives to me. Like they were just overperforming the big faces and oh, God, no, I'm gonna wonder about that all day. All right, I don't want to talk about that. I could sing the song. It's ridiculous.

Roisin 26:37
Oh, yeah, that stuff sticks with you forever.

Scott Benner 26:39
Yeah, I'm there. I'm not singing the song in case you wonder. But I so in your note to me, you you wrote a lot.

Roisin 26:46
Yeah, I was like a mess when I wrote that. I think

Scott Benner 26:51
I always love when people are like, I don't know, what I wrote was in a daze. You know, it's, um, you know, some people will come on and joke like, well, I, you know, I'm recording now, six months after I signed up. And yeah, and I'm always like, honestly, for some of you newer diagnosed people, I think that's too soon. Like, I've put people off longer at times, because of their state of mind. And I've been, you know, once you've been through this a little more raunchy, come back. But describe that, like, when you reached out, why did you reach out and what felt like the imperative,

Roisin 27:22
I think I was just like, I was grieving, like, a lot. You know, like, sort of the loss of the life that you think you're gonna have for your kid. And I didn't know about anything, you know, like, like most people like type one diabetes, and you had something to do with injections, and insulin and sugar. And I don't know, I thought people with diabetes just sort of gave their selves four shots a day, every six hours and went on with their life. Like, I had no idea. And when you start to learn that, oh, no, it's so so, so much more than that. It's just very, I think I was overwhelmed. I was super overwhelmed. Yeah, I'm somebody who like, really likes to, if I do something, I want to do it. Well, otherwise, I'm not going to do it. And I don't really have any choice in this matter. I have to do it. So I have to do it. Well, you know what I mean? And I think yeah, I was just really overwhelmed. Probably.

Scott Benner 28:12
You wanted to share it with someone or you wanted to get answers or you had,

Roisin 28:18
what do you think? Maybe just shouting at the universe? I don't know. Oh, I've tried to get Yeah, I don't know, get help get get comfort, get solidarity. And then I think also, I'd been listening to you a little bit and just sort of being like, how do I get to the point where you are. And like, I realize, even you know, I'm one year in now. And you're I don't know how many years you are with Arden, like 16 or 17 or something. It's a, it's apples to oranges. You can't really compare it. But I think at that time, it was just like, Okay, I need to get to where Scott is, and I need to get there by next week. So how do I do that?

Scott Benner 28:54
Well, I can help you speed up a little bit. But I don't think I can give you the whole 60. Although I guess the podcast is getting to be quite a compendium maybe one day. Yeah, we'll figure out how to do it. But yeah, I mean, I mean, Arden was to she's 18 now. So 16 years, I get I know the feeling of of, like wanting all the information at once. But the truth is, is like, you know, you get to that the same way. I mean, what's the saying about how do you get to Carnegie Hall? Practice? Exactly. So I think it's a very similar situation. People don't like to think of it that way. Which is why I usually talk about like, you know, you have to have these experiences over and over again and really take something from them and, you know, so you can move on to the next one with some like firm understanding. And it's hard to hear, like, yeah, in the day, you know what I mean? Like when the day's moves so slowly. And then next day, you don't feel like you've made any progress over the day before.

Roisin 29:53
Yeah, exactly. Exactly. But I like I've been having a lot of feelings about that the last week or so because It was David's one year diagnosis date this past Sunday, just a couple of days ago. And so like, a year out now, I'm kind of able to like, like, what was I doing last January last February, like, wow, like we have come so far. You know, we're still not perfect. It's progress, not perfection, learning new things all the time, of course, but like, I wish I could have gone back to me a year ago. And then like, a year from now, you're gonna have such a better handle on this. Like, you won't, you won't be panicking every day. I always

Scott Benner 30:32
like struggle with how to like, get that across to somebody. Like Like, yeah, one day, he. So how do you feel about the thing that I say that diabetes doesn't get easier, but you get so much better at it that some days it kind of feels easy? Yeah. 100%? Yeah, yeah, that's the vibe, like so you're doing this difficult thing. But you're so skilled at some point that, that feelings gone like so have you lost that horrible feeling in your gut,

Roisin 30:57
you know, there's still moments, the biggest thing I struggle with with him right now is like, he's an eight year old boy who has zero predictability in his activity levels. So like, he can go from lying on the couch, to sprinting around the house and do the same thing four times in an hour. And we're on MDI. So like, there's no messing around with the Basal rates or anything like that. So like, it's one thing when he's in the house with me, I can be like, David, like, stop zooming around the house and have a have a little juice. But then when I know he's doing that at recess at school, and I'm watching the Dexcom, and I'm like, Oh, I guess he's sprinting around the playground. You know? Like, those are the moments that are hard for sure.

Scott Benner 31:40
I, you know, I just You didn't say you had a horrible feeling in your stomach. I just assumed you did. So yeah. It's a, it's really something else. Hey, quick sidenote, the two actors from out of the box I've now looked into. Yes. And they did nothing ever after the show. Which

Roisin 32:00
maybe they did hate it.

Scott Benner 32:02
And it ran for six years. They did like 70 Some episodes of this children's show. I found the woman Vivian on Instagram. And I'm not calling her out. It's just so sad. She doesn't even have 5000 followers on Instagram. And she's doing like, there's like, you remember what episode this happened? And I'm like, Oh, you're not really talking to anybody. But okay. The other guy, Tony, if anyone listened. Now, I just feel at this point. Like I owe it to people to go over this. Tony apparently has done nothing professional either. So, you know,

Roisin 32:35
I just I just googled it and the image generates some kind of memory in me. Does it feel like I've seen it before? Yeah, it's what was it? 998 to 2004. So yeah, okay. The feeling one in 82. Well, yeah,

Scott Benner 32:49
the feeling it brings up inside of me. Machine is. I don't know if you ever heard this phrase, dude, chill. Because that's how I used to feel. When I saw it. I was like, I can't believe we're doing this. I feel douchey. Yeah. So just real quick, and then we'll get back to your story. The phrase, Deus chill doesn't hit you, right? You're not old enough? No, isn't that amazing? It's an urban, it means an exclamation, calling attention to an embarrassment of someone who has brought ill consequence on themselves. That's how I felt for those people I watched.

Roisin 33:26
They call it like, cringe now. cringe. Yeah. Are you? I'm 4010 years

Scott Benner 33:34
younger than me. And that, I find that incredibly interesting. Okay, so you have I guess we're gonna get to this part, right? You're in Canada. So you get type one diabetes? Do they give you insulin from 1980? Or do they give you insulin?

Roisin 33:49
Absolutely. Absolutely. At the ER, and our diagnosis was like our his diagnosis was, we were in the ER for a total of four hours. We did not stay overnight. We didn't have any big intense it was he walked in, he walked out. And with a bag of supplies where it was like here go keep your child alive. Or like Okay, I'll try. And we got mph and humor log to start and we were told how many carbs to eat per meal and we had a sliding scale and a little we had this little card it was like if if his blood sugar's above this add this much if it's below this add the takeaway this month. Sure. Whatever and, and I hated it. I absolutely hated it. I found it pretty useless.

Scott Benner 34:37
How long did you do it before you push back?

Roisin 34:41
A few weeks. I started I started listening to the podcasts really early. Like literally, there was a teacher at my kids school who steps son is type one and somebody I know whose husband was type one. And within the first couple of weeks, they had both reached out to me and said You gotta listen to the juicebox Okay, and they started Listening to a few things, and hearing about carb ratios and stuff. I was like, well, well, yeah, like, that makes sense. Can I have one of those please? So we were we were doing everything virtually because of COVID. Also, so I'm emailing the team being like, Can you teach us a carb ratio, please? They're like, well, I don't know. It's a pretty complex thing. And I'm like, no, like, my husband and I are pretty smart. We know what a ratio is. I know how to carb count. I had fried way prior to all this, probably like 2019 2021 21. I put myself on a keto diet. And I was like, strict strict about it. So like, I knew how to count carbs. That wasn't, I already knew how many grams of carbs were in an apple or a handful of blueberries or whatever else. Like, I just knew that stuff. I don't need this sliding scale. This is useless to me. But we got we got the carb ratio a few weeks in and that definitely help.

Scott Benner 35:55
Can I ask that they really said it was complicated?

Roisin 35:58
Yeah, yeah. I think that's like, I don't know, I think that's one of my themes. I shouldn't put words in their mouth. I don't, I can't remember if they actually use the word complicated or not. But my husband and I have felt from the get go that, like, they're always sort of holding back what they want to give you and teach you, because they don't know if you have the capacity for it. And I kind of get it because they're dealing with people from all areas of life. But I wish there was a way for them to look at certain people and be like, Oh, we can probably speed this up for you guys. Because we were ready for that.

Scott Benner 36:33
Yeah. I mean, I know I've talked about this. But I don't I don't I don't know if I sound. I don't know, like I might do I sound erudite when I say this, but I mean, is it really that hard to count carbs? Like it's on the package?

Roisin 36:48
I mean, I guess it's just like one more thing on top of everything else. Maybe they're just trying not to overwhelm you. But

Scott Benner 36:54
how early induced? Was it? When you were asking? And they were like,

Roisin 36:59
maybe two or three weeks? I can't remember. We like we have to push them to get a carb ratio.

Scott Benner 37:06
I have an episode, where you could make your

Roisin 37:08
own. Yeah, I hadn't gotten there.

Scott Benner 37:11
It just went out a couple weeks ago. I apologize for Shane for not making the podcast fast enough for you. I really did let you down. I apologize. Oh, that's interesting. So you got it from them. And you had to you basically had to vouch for Dave to make you take a 10 like a 10 question IQ quiz just real quick, or did they just give it and let you do it?

Roisin 37:34
No, they Well, it was we're doing this on Zoom call. And so they're sort of they start explaining it to us. And I was like, Yeah, I get it. 30 grams of carbs, one 250. And he gets two units. I got it. And they're like, Oh, okay. You know, like we demonstrated pretty quickly that like, we could do this. So I think once they sort of realized that they were happy enough to go through it with us, but I don't know. It's just I felt like they were like gatekeeping a lot at the beginning. Yeah.

Scott Benner 38:00
Did you hear anyone yell over their shoulder? Oh, oh, we got a smart one here or something like that? No. I'm just teasing. I'm sure people in Canada don't talk like that. So. Okay, so you got to that. And that made it easier for you? I would imagine. Yeah, a little bit. Yeah. Was he not? honeymooning at all looking back?

Roisin 38:24
Um, I don't think he ever had what I see some people call their honeymoon like for for him his honeymoon was more in my opinion, like cyclical. Like we would just he always he needed insulin for every card from the get go. Like that was just the way it was. But then every so often, and it was more frequent at first and you know, less frequent as we've gone through the year. He has these days where it's like, Oh, your pancreas is working today. And we have a little joke. We'll just be like, Oh, Mr. Pancreas turned on today. I guess. I guess we'll just be careful today. And maybe we'll go for ice cream later, you know? Yeah, exactly, exactly. We'll just watch the CGM and see what happens. And at first, it would be like, you know, every couple of weeks, he might have two to four days like that. And then, you know, then it was every four weeks, then every six weeks. And now the last time I can remember this happening was the beginning of December. He had, it was maybe not even 24 hours, but just where we just could not keep his levels up and he wasn't sick. And he wasn't, you know, he wasn't running a marathon. He wasn't doing anything spectacularly different. It was just like, every time he'd eat blood sugar would go up and hit maybe like not I have a conversion table here. His blood sugar might hit like a 140. Yeah. And then without insulin, come right back down on his own. And he'd start going low and we'd have to give him more.

Scott Benner 39:49
And do you find that a lot of celiac friendly foods are higher in carbs?

Roisin 39:54
Well see, that's the interesting thing. I see people talk about that all the time, but he had his diet, his celiac diagnosis. Just two years before type one diabetes, so I have no experience bolusing for wheat and gluten full foods. So I don't know what the difference is.

Scott Benner 40:09
Do you have any trouble? bolusing for them? No,

Roisin 40:11
I don't think so. Like I see I see people all the time say it's harder, but I don't know anything different. Maybe it is harder. I don't know how he would his blood sugar would react with wheat. So I can't really say if it's harder or the same or easier or whatever. And I don't find it an issue like I don't think the gluten free is an issue.

Scott Benner 40:34
Good. That's great if you do not use a lot of prepackaged gluten free foods.

Roisin 40:38
I wouldn't say we don't use a lot. We do like eat chips and we have a gluten free pizza we buy from Costco he likes and granola bars and gluten free Oreos like he has all those things but all like we're a moderation family and we were like that before type one diabetes came into our life. So you know, he might get one or two Oreos, not a whole sleep. Right?

Scott Benner 41:01
I'm embarrassed but that Costco pizza. It's in the green and white box. Yeah, it is really good. Yeah.

Roisin 41:06
It's really good. Everyone. I've served it to likes it.

Scott Benner 41:09
It's it's still frozen pizza, but it's somehow I don't know. It's enjoyable. Yeah, it might make it in my mind not as pizza, but for whatever it is. If you gave it its own food category. I like

Roisin 41:22
to call it a flatbread or something. Yeah,

Scott Benner 41:23
that's good. I am a little embarrassed. You said the Costco pizza is like I know that pizza.

Roisin 41:30
Every everybody likes it. Everybody likes this gluten free pizza. Yeah,

Scott Benner 41:33
you're so nice. I felt so silly. Saying it for some reason. Oh my god. Okay, so and he's MDI still, is that right? Yes, yeah.

Roisin 41:43
Which is like another bone, I have to pick with the medical system. Because we want a pump. We've wanted a pump since like two months in. But the way it works here is the government will help will cover the pump for us. But you have to be MDI for a year. So that's great. But you know, his diagnosis date has passed, and he's still MDI and he's on a pump start waitlist. And we only got put on the pump start waitlist after we passed a little test in October, November. I mean, we could have passed that test last spring. So why didn't they give us the test last spring? And then we could be on a pump by now. And

Scott Benner 42:23
did you ask did you ask to do it earlier? And they told you no. Or just you just went with it? Oh,

Roisin 42:28
we we've been saying since you know, after the initial diagnosis, shock, you know, maybe the first couple months, we've been saying we want a pump. We want a pump as soon as possible. Please get off the pump. We want a pump. What do we have to do to get a pump?

Scott Benner 42:43
They said wait a year, and then on the magical year date? They were like, Okay, now get in the line, basically. Yeah, yeah, exactly. But first, smarty pants, you have to pass this test, by the way,

Roisin 42:54
and it was it was like, What is a carbohydrate? Why do you have to cover carbohydrates with insulin? How many slices of bread that your child eats? Yeah, it was just like, if I feel like if I didn't know that stuff, I would have killed them by now.

Scott Benner 43:11
Everyone. Why society doesn't lunge forward constantly. You know, you're always like, Why did things take so long? Yes, exactly. Here's one of your answers.

Roisin 43:21
You said something. And it was an early episode, because like I sort of started at the beginning about it was like speed limits on roads. And it was like, yeah, like most of us could could drive a lot faster and be fine. But because there's some people who can't we got to, we got to slow it down for everyone. We all do this. That's kind of how I felt.

Scott Benner 43:41
Yeah, I mean, I guess I'm laughing because maybe someone couldn't pass the test and our carbohydrates and everything, but I guess I'm laughing more because it's the expectation, like, why do we set our expectations? So, you know, like, like, like, imagine somewhere, somebody got down, they sat in a room and like, we have to come up with a test to make sure that it's okay for people to go from MDI to pumping now, let's Yeah, let go the idea that that's probably not necessary, but okay. Somebody's decided they have to make a test. And then that ends up being the test. Yeah, yeah. You're sitting there looking at it thinking this is an incredible waste of time and effort.

Roisin 44:19
Yes, yes. I 100% did.

Scott Benner 44:23
Oh, no. Put me in charge. I'll fix.

Roisin 44:28
Fix fix everything.

Scott Benner 44:29
My first day is king, I will take away the test to get the why will at least make it valuable so that when you answer the question, I can tell if you'd be able to use a pump or not.

Roisin 44:38
Sure. Yeah, talk about like Basal rates or something. It'd be like, do they do they understand this concept, but no,

Scott Benner 44:46
a whole diabetes and MDI, how would you not understand what a car does and how you've been doing it already?

Roisin 44:54
Exactly.

Scott Benner 44:56
Wow. You know, Can I say something please? Office, why not? Right? Go for it. Yeah, there are days when I wonder why I'm successful. And then there are days when I think I'm not really beating out many people. Yeah. I mean, like, yeah, I feel bad. Like I sent my son off into the world. And he just like, Do you have any like, words of wisdom here? And I said, Yeah, you've probably already got like, 80% of the people be just, you know, yeah, go. Like, you'll get no room with 10 people. And you'll, you'll realize, like, some people don't care. Some people don't try. Some people don't I don't even think it's because they don't have it in them. Like sometimes, like everybody's symptoms, people are just content. Like, that's how that list makes me feel like that, that tests like somebody sat down with diabetes, carbs. Yeah, you know, ask those questions. And I did the thing. I made the test like I was supposed to. And now, God knows how many years later, and how many people they've tortured with that stupid test to get somebody?

Roisin 45:59
Oh, yeah, it felt really old fashioned. Really old fashioned. Yeah,

Scott Benner 46:02
don't Yeah, everyone keep not trying. I enjoy doing well. I mean, you don't I mean, like,

Roisin 46:08
like, it takes a little easier. Yeah. Listen,

Scott Benner 46:11
if four of you tried harder, I might be done. You don't? I mean, like, I've Eltek I'm so special. I'm just working hard. Like, just Yeah, I don't know. It's just, it's frustrating. You're like, why are we talking about this, but I'm very frustrated.

Roisin 46:27
This is how I fell for a whole year.

Scott Benner 46:29
I think it's because my mom's in the hospital right now. And you know, I appreciate that. But as you're going through and working through the problems, you recognize that if you don't help, they're going to follow some bullet list. And she'll either be okay, or she won't. And they're not very hard, you know?

Roisin 46:49
Yeah, you have to advocate you have to, like if having having a child with medical conditions has made me learn anything, it's, you have to advocate. The other thing is, I was gonna bring this up, too. I want to know if you've ever heard of this. David actually had a couple major seizures before he was diagnosed with anything autoimmune. And like it, he was at four years old, and at five years old, and then the celiac came at seven. Obviously, he had celiac before them, we just didn't know. But I can't you know, there's something in my brain. I can't help but wonder if those seizures were related to upcoming autoimmune problems? Because the doctors could never find a reason for them

Scott Benner 47:31
to be experiencing a memory loss after them. No, no, I

Roisin 47:35
wouldn't say so. Like he couldn't remember the actual period of the seizure. But you remember just before and just after?

Scott Benner 47:41
Interesting. I don't know. I mean, I'm being perfectly honest with you. I'm not sure.

Roisin 47:46
Yeah, I just wasn't sure if that's something you'd heard people say before? Or

Scott Benner 47:50
did it like a blood sugar low? Or was it something

Roisin 47:55
I don't like? I assume they checked his blood sugar levels. But this was way before diabetes was part of our life. So like, both times, we took them to the ER, obviously. And they ran whatever tests they run, and he had MRI and EGS. And all you know, all kinds of things and no discernible cause ever found. But like, I don't know, I don't have that. I don't know any other kids who had grand mal seizures at four or five and two autoimmune diseases at sub five and seven.

Scott Benner 48:25
Yeah, I heard about one little girl who couldn't walk once. But that's that's the only part of the story. Yeah,

Roisin 48:29
that's a different story. And it was pretty funny.

Scott Benner 48:31
I wish I would say, I love that your family just turned that into like, like a fun tale about the time the baby couldn't walk.

Roisin 48:40
I don't think it was fun at the time. No, like, no. My parents credit. I think they were very upset at the time. But you know, 20 years later, they're able to laugh about it.

Scott Benner 48:49
Are your parents, your first your first generation so your parents weren't born in? They were both born in Ireland. Yeah. So this happened to you in Ireland? Yes. They probably just picked you up. And they were like, this one's broken. I know. It's so funny. You're telling a story from like the 70s and 80s. And I'm acting like it's 1800.

Roisin 49:12
Yes. No, no, they had hospitals and

Scott Benner 49:17
I'm sorry. Give me I made myself laugh. And whatever's left from my COVID from nine months ago is still in there somewhere. Yeah. I'm gonna I'm gonna circle back to something for a second because I'm sure I'm still irritated. And if I don't let it go, we won't be able to move forward. All right. What does it mean to advocate for yourself? I Googled this. Self Advocacy means you are able to tell people about your thoughts and feelings. You were able to ask for what you need and one, you know your rights and you speak up for your rights. You are able to make choices and decisions that affect your life and take responsibility for the choices you make. All I hear when I read That is the people you're going to intersect may very well not do the things they're supposed to do. So you're gonna have to make them. Am I wrong? Or is that?

Roisin 50:09
No, I think you're right. I but I do think a lot of it comes down to at least here like the hospital staff being overworked, like, the backlogs are just really intense. Everybody has too many patients and not enough time and all of that kind of stuff. So and like, funding just gets cut year by year. It's like, Oh, let's see where are we can chisel off a little bit more, you know. And you're constantly asked to do more with less. So if you're, it's the squeaky wheel gets the grease, if you're not the one calling and emailing and asking the questions and pushing the deadlines and blah, blah, blah, then you're the one who just sort of sits at the bottom of the waitlist for things. See,

Scott Benner 50:54
I hear you. And I agree. And yeah, what I think is, if I took my car to have new tires put on it, and there was a really long line, and they gave me the car back without all the lug nuts on it. What I go, Oh my God, they're very overworked. Like,

Roisin 51:10
no, we don't like we don't pay for healthcare here. Right? Like, that's not coming out of my pocket, huh? Yeah, like, whereas if I go to a mechanic, I'm handing them $1,000 somebody's

Scott Benner 51:22
paying them though, right?

Roisin 51:24
Oh, yeah, I know. And taxes are high and all of that. And we do, you know, you try to get your voice voice heard through your political decisions and that kind of thing. But yeah, you're not signing the paycheck.

Scott Benner 51:37
I think I'm more upset with people and their, their lack of desire in their chosen professions. Sometimes, and I don't just mean medical, like, I don't know, I'm all over the place today. But like, I'm picturing some guy tending his herd of cattle in South America with a stick. And I'm thinking like, try harder. You don't I mean, like, like, we've modernized everything, to the point where we're the things we complain about are, are sometimes interesting. And, and people I know, I know, everybody's not doing what they want. But I don't know, like, I'll put it on myself for a second, I had a lot of jobs I didn't want. And I got paid crap for them. Like, honestly, like, I made $4.50 an hour to work in a sheetmetal shop. If anybody thinks like I, I sprung out of my car and bounced to the door every morning for that job. You know, it wasn't a lot of fun. I wasn't compensated enough to even live barely, it was absolutely no fun. I got injured all the time. But we still went in there and worked our asses off every day. And we were under staffed and underpaid. And it was an unsafe work environment. And I never would have thought to say any of those things, anybody. I just went, I did that job. And in my mind, I thought, I'm going to do this, but I don't want to do this forever. So I'm gonna find a way to do something else. Right, you know, and I don't, I don't know, no one ever gave me a job or offered me a job or helped me I just, I kept clawing my way up a rickety ladder. And yeah, and then I hear like, I don't know, I have to ask what you're saying. I'm so pissed. I don't know why. How did you make the upset? Alright, I'm gonna let it go. Because it's unfair to you. But everybody work harder. There are just care a little bit once in a while. You don't mean like, somebody comes in and says something to you. Like, I know you're busy, but try to see them for their problem. They're there for help. And you're and you're and you're representing yourself as someone who's going to help them. So help them or don't quit, leave, you know, like, take,

Roisin 53:48
I have to say like, in their defense, everyone we've dealt with has been really nice. Like, you know, I haven't actually encountered anyone who's like a straight up jerk or has given me bad info unnecessarily or whatever. It's just, yeah, just the gatekeeping and the slowdowns. And that's, that's the part that drives me nuts.

Scott Benner 54:09
I know, you didn't say any of the things I said, by the way. I'm not putting a record. For the record. I'm not putting any of that on you. You just got me upset. Because Because I'm watching people like, I don't know, I feel like at this point, I'm talking to people who are representing themselves in my mother's situation, for example, as learned people, and the response you get back from them is just borderline that. I don't know. It might be this. Okay. Do you need me to guess if it's like, like, like,

Roisin 54:42
why don't you get on Google for you?

Scott Benner 54:44
Why don't you tell me what you think it might be? Wow. Wow. No answer. No ideas. You want to try something? Okay. All right. Well, should we just go hit her with a shovel? Like like I need like, what is it like Like, seriously, like, are you gonna help? Or are we all just gonna make noises until you can move on to somebody else make or somebody else's problem? And anyway, I, by the way, I generally speaking have a lot more hope for people than I sound like I do right now. But I'm, I'm past

Roisin 55:17
alright, you must I don't think you'd have this podcast if you didn't Yeah, but somebody's

Scott Benner 55:20
gotta say it once in a while, right? Yeah, just do something. I don't know. All right. Let's see I'm looking through your list looking for something that won't make me upset. What else did you want to talk about? I'm gonna ask you, I'm gonna stop. I'm gonna stop involving myself.

Roisin 55:40
I think the only other thing like that I really found challenging and that so much of the support groups and stuff, including your your own your Facebook group, it's it's American, which makes sense. You guys have a lot of people. But then here in Canada, at least in Ontario, we don't have school nurses. Yeah. So the whole school piece of the puzzle for young diabetics is just like, that's a totally different story. Like I see people like, I'm so mad at my nurse she gave my son is injection five minutes too late, and his blood sugar showed up and like, you have someone to give your kid a shot. That's amazing. Like, wish I had that. You know, he's he's self injecting at school this year. At diagnosis, we were offered mph, because they don't have people to give shots at schools. So that's why all the kids here be being given the 1970s insulin, because there's no one to go give them a shot for lunch.

Scott Benner 56:41
Yeah, I had a lot of conversations before I figured that out. Like, I can't be like, why are they doing this in Canada, and then it hit me they want them to get through the day without needing help. Exactly.

Roisin 56:53
But we hate I hated mph, he was on it for a few months until I like learned and demanded something else. And he would just have to be his blood sugar levels would have to be so high not to crash. Once the peak came in. Like you'd have to be up at like, look at my chart somewhere around like a 220 or something. Because if not, the MPH would start peaking. And he'd be he'd be down at a 50. Yeah, in no time flat. You know what I mean? So unfortunately, there's a lot of little kids in Ontario. I can't speak to other provinces, who I mean, maybe the mph, everybody's different. Maybe it works better for some people, but who are just riding at these high levels all day long, just so that they don't crash when the MPH sets. Yeah, and that. Yeah, really pissed me off.

Scott Benner 57:45
I bet would have made me upset as well. Are you using a CGM? I'm sorry, I forgot. Yeah, he's got a Dexcom Dexcom. So you're seeing it coming. And then how does he handle it? Does he contact you?

Roisin 57:57
Well, we have sort of a set. You know, he has a set mealtimes. It's kind of an annoying schedule they have in the school board here. They call it a balanced day. They don't have they don't have a lunch per se they have to equal meals throughout the day. So he has he goes to school for 830 in the morning. He has gym for 40 minutes. Then he has class for a bit then he gets a shot at 1015 eats at 1030 has 25 minutes of recess after that. Then more class than a shot at 1pm eats at 115 recess again after that and then more class and then he's done at three. So it's just like, physical activity and insulin and carbs all day long.

Scott Benner 58:43
Yeah. You know what I mean? How well you know his schedule. I don't miss that. I don't miss that.

Roisin 58:48
Yeah, yeah, you have to right

Scott Benner 58:51
yeah, no, I just I can remember walking around being like well at one o'clock this is gonna happen. She's doing this. Yeah, exactly. Now I really have to just pay attention for the next 45 minutes because this is the end of gym class. Exactly. Yeah. God Yeah, I don't miss that.

Roisin 59:05
Yeah, no, it's uh it's well that's it the mental toll of all that like the I people because I like I said I'm a stay at home parent people are like, what do you do all day? Like I'm I'm a pancreas. That's what I do all day. Like

Scott Benner 59:19
I did it in person. And now I know how to do it virtually. So yeah, yeah. Yeah, it's a It's taxing for sure. You he has a

Roisin 59:31
phone and we text I got that idea from you. Like, you know, we just text all day long. If I see him going a little too low. He has a phone and two blood glucose tabs and a belt around his waist. And you know if I think he's going too low, I'll call him to have one of those. He obviously has snacks and stuff in the classroom too. But just so he has something on his person that he can just quickly take something and keep focusing on school.

Scott Benner 59:55
Yeah. Well, that's, I mean, that that's what worked for us. You know, constant, that constant is the wrong word like immediate access to contact is, is really what I mean, we weren't constantly we're barely connected to each other throughout the day. But when you needed to be when you need to be, there was no pause. Or and you didn't have to exactly have to wait for another person. And that was exactly yeah, a big deal.

Roisin 1:00:20
Yes, because last year, we did it. I mean, then he was young. He was in Grade Two, when he was diagnosed last year, we did it more through the school office, and like going to call the school office every time your kid needs a Dex tab, we call them Dex tabs, dextrose tabs. That's kind of a pain for everyone. And so it's a lot better this year.

Scott Benner 1:00:40
I'm glad that you cleared up that their decks, dexterous tabs, because like, I'd be like, these people just putting decks in front of everything because they love the Dexcom so much. This is our decks.

Roisin 1:00:52
Yeah, there's a brand brand of the tablets here called decks for and so that's, that's what we use.

Scott Benner 1:00:58
I see. Does he hate them like them? No, he loves them, though.

Roisin 1:01:03
He will ask for them. Sometimes he does it soccer last night and he needed a couple. I thought it's like, Can I have one more? It's like, no. This is because you need it. It's not just for trees.

Scott Benner 1:01:15
So weird little kids. Stop it.

Roisin 1:01:20
Oh, we got some hot chocolate flavored ones recently. He loves those. Yeah, there's all kinds of great flavor.

Scott Benner 1:01:28
I'm gonna look this up. Is that a Canadian thing? Or is that everywhere? Yeah, it's called

Roisin 1:01:31
Dex four. And then it was hot chocolate flavor. It might have even been chocolate and marshmallow. I can't remember.

Scott Benner 1:01:37
chocolate marshmallow tablets. There you go. See? This is what I'm talking about. Somebody at this company is working hard. Right?

Roisin 1:01:43
Yeah. There you go. You're sick of the fruit punch flavor. They need something else. I

Scott Benner 1:01:49
got up one day and there was like, I bet yeah, I can make these things tastes like chocolate marshmallows. Let's try harder boys or girls, by the way, everyone. Everyone works there. But yeah, like, Ah, all right. See? See how much happier that made me just thank you

Roisin 1:02:03
for saying. I'm so glad I was able to say something that made you happy.

Scott Benner 1:02:08
You said that. I'm like, they're so much trying. That's a good thing. Yeah. Oh, my gosh, yeah. I I was like earlier this close to a rabbit hole about you know, 100 years ago, what people had to do to stay alive. I'm like, What am I?

God, Oh, my God. Okay. So first of all, I appreciate you doing this. And, and, and having this conversation talking about the things you're talking about? I do have a question going back to the celiac? Sure. I felt like I got away from it too quickly. You may have heard last year, someone get very upset with me. When I was talking to a gentleman whose child had recently been diagnosed with celiac, or already had type one, and the father was really in the middle of a mourning for what the kid couldn't eat anymore. And he got fixated on like, what if my, my child goes to a birthday party, and they can't have like a cupcake? And I said, it's like, Is this a real problem? Like, is your kid always at birthday parties? Like you don't even like it? And key times a year, right? And the child, by the way, you know, has celiac, but doesn't have any physical signs of it. And I, during this conversation said, Well, I don't know maybe you could just let the kid have a cupcake until you figure the whole thing out. And I was I was approached by a couple of people who said that, you know, celiac is much more can be much more serious than that. Even if you don't have symptoms, it could lead to other very serious problems. And yeah, I wonder how much that's in your head that even if you owe 100%?

Roisin 1:03:54
Yeah. Like all the time, like I said, my mom's celiac too. And she has been for the last 20 years. So like, it's not new for me. But yeah, we're very careful about cross contamination and stuff. I don't. He doesn't ever get like a pass from celiac. I mean, the difference with David is he gets very sick if he eats it. So he doesn't want to, you know, see if he went and had a slice of regular pizza, you'd be sick all night. So just that that doesn't appeal to him.

Scott Benner 1:04:24
sick, sick. pain, stomach, bathroom.

Roisin 1:04:28
Pain, pain and pain and bowel movements. Yeah, not nausea. I know. Some people get like a nausea component. He hasn't gotten that. He says it feels like somebody has been punching them in the gut.

Scott Benner 1:04:39
Do they? Do they warn you that not adhering to the diet could lead to other issues? Oh, absolutely.

Roisin 1:04:46
Yeah, there's various conditions and cancers and all kinds of scary things. I actually met a woman this past summer who she was only diagnosed celiac recently, and she was poor. I lay around my age, maybe a little younger, like 3738. And she had struggled to conceive for years and worked with fertility doctors and all kinds of things. And then she finally had a doctor checker for celiac disease, and she was positive and switched to a gluten free diet. And a year later, she was able to get pregnant naturally. Like, you know, I know that's an anecdote, but she firmly believed and this doctor firmly believed that it really affected her fertility.

Scott Benner 1:05:27
Yeah. Just all that inflammation. Yeah, yeah, I know, it's a word that just gets thrown around all over the place. But, I mean, it really does seem like it's the core of what's wrong with a lot of people that I speak to, in one way or another, and that you look back all those like, such a long time ago, like steroids were were invented. And, you know, like, you get a steroid pack when you're, you know, I don't know, you're ill you have an illness or something like that. They were invented so long ago, I read this thing I wish I knew were about prednisone. But back when it was invented, they thought they had, they thought they had just cured everything that was wrong with people. Oh, wow. Yeah. And it wasn't until obviously, they found out that, you know, taking it for extended periods of time causes different problems. But that idea is back in the I think in the 30s right there. I mean, the person won a Nobel Prize for it. Excuse me, cortisone was identified in the 30s. Prednisone was developed in the 50s. Okay. And, yeah, they talked about back then they, they thought they, they they cured what ill people were so excited about it. And you know, it's all about inflammation. And it's just, I don't know, it's, it sucks causes everything. Yeah, it sucks it listen, it made your little baby legs not work for a while. And there we go. And all this other stuff your son stomach to hurt if What if he has a you know, if we

Roisin 1:07:03
use like a toaster, like that has had wheat bread in it, and we put a piece of gluten free bread in it. He will feel sick. He'll he'll hurt afterwards.

Scott Benner 1:07:11
That's amazing. And it's happened by mistake. So it's not, you know, yeah,

Roisin 1:07:15
it has, you know, like that the hardest part of celiac is eating out or eating other people's homes at home. It like, honestly, barely bothers me. Because I know what I'm doing. But you know, even if you go to a very well meaning family member's home, and they've made a gluten free dinner for you. Maybe they don't know that somebody scooped some of the butter out with a knife that had been used to spread on a piece of gluten bread. Sure. And they've gone and put that in the mashed potatoes now. And now you eat the mashed potatoes and you feel sick.

Scott Benner 1:07:48
God, that's crazy. I mean, it's not crazy. Yeah. But it is, you know? Wow.

Roisin 1:07:53
Yeah. So that that's the heart. To me. That's the hardest part of celiac. And I see some people especially I find people who get the celiac diagnosis after diabetes, like when they've sort of already got diabetes managed. And then they get the celiac disease diagnosis. They a lot of people say if they could cure one, they'd pick celiac over diabetes.

Scott Benner 1:08:13
Fascinating how often people don't pick diabetes when they have multiple issues, actually,

Roisin 1:08:18
yeah, I would pick diabetes in a heartbeat. Yeah, I just I always say celiacs never kept me up at night.

Scott Benner 1:08:25
Right. I can sleep as long as we stay gluten free. I was editing an episode I just made with someone who has MS. And connective tissue disorder and all these other things. And I asked like, you know which one and but boy, it didn't take long. She's like the connective tissue disorder. I'd like to get rid of that. Yeah. Interesting. Anyway, it's just I love those different perspectives like people. Yeah, yeah. People who have real perspective about things who are able to, I don't know, you even have it like you're, you're measured. Were you measured like this before all this started happening? Do you know what I mean? You're no, you're you're an even thinker. Speaker. You haven't gotten too high or too low while we're talking? You're probably sure Yeah, yeah, your paste. Like you're not you haven't gotten access. I just edited one. The other day that I mean, the introduction for it might be Hi, this is me and this other person, you won't hear me again till the end. I tried a couple of times, and I couldn't stop her. Like I really felt like I was running backwards, holding onto a bull's head. And the person was making sense and, like, coherent and thoughtful, but just like shot out of a cannon. And right, yeah, you're just like you're talking about upsetting things. And you're at this level. I got upset and you stayed at this. Like it's really I didn't know if you

Roisin 1:09:53
got brought to this. Yeah, I guess I'm not a very emotional person. No, but that's the Irish thing, right? No, no, it's Originally, anyway,

Scott Benner 1:10:02
am I am I generalizing? Or is everyone in your family?

Roisin 1:10:05
Right? Yeah, you might be right. Well, I've got, yeah, I don't want to put anyone on the spot. Some people are more emotional than others in my family.

Scott Benner 1:10:15
I joke about my wife all the time. Like, I'm just like, I'm upset about something. And she's like, Oh Jesus, okay. But, you know, you said a minute ago about, you know, the hardest part about celiac. What's the hardest part about type one?

Roisin 1:10:36
I mean, I hate the injections. I absolutely, like a year of MDI, when you're trying to have tight control. Like my poor kid. His little arms are full of bruises. I hate I hate every time I feel a needle pierces skin, you know, I just something inside me breaks every time I feel that. Yeah, I don't know. I guess just the worry. The constant worry that like a high or low not, you know, not so much a high I don't like highs, obviously. But if he's high for a few hours when he's away from me, we'll deal with it. But the he could just have this medical low emergency without me there to take care of it just Yeah. just breaks my heart.

Scott Benner 1:11:13
Yeah, it's frightening.

Roisin 1:11:14
I know. Yeah. Yeah. I know. And he, he just has for him. It's the activity lows. Like if we just kept them inside all day. It's not too bad. But he's really good at sports. And he loves to play sports. And I love that about him. But he just could be running around and look at my list. Again. He could be like at like a 54 and sprinting around the school. And I'm like, dude, I'll call him. I'll be like, David, you need to chill. And he's like, No, I don't want him. You have to right now sit down and put one of your hot chocolate deck stabs in your mouth and chill for a minute, you know?

Scott Benner 1:11:52
Yeah. I mean, anyone that hears you talk can't I don't know how you could not be sad. Like, basically what you said is because of these two issues, if we just stayed in our house and didn't move around very much everything would be fine. Yeah. I don't want you to think we live that way. No, really? I don't I don't hear that you do? No, no, no, not a lot. But

Roisin 1:12:15
no, there is a part of me that wishes I could put them in a bubble. And just take care of him forever. But like, I know that my issue, not his. Yeah. So I have to like put myself outside the bubble. And you know, he does. He does soccer. He does ice skating. We travel we go to Florida every year, we're hopefully going to do a Europe trip this year. We paddleboard all summer long like we don't we don't keep them in a bubble even though probably if I really? It would make my life easier if I could.

Scott Benner 1:12:49
No, no, I hear you. Obviously, you're not going to live that way. Yeah, but somebody ends up doing it. You know? Yeah, that's that. So I'm gonna ends up getting overwhelmed and thinking, if I just limit all of these, these exterior issues, I'll be okay. And then they they end up doing that.

Roisin 1:13:09
So yeah, you can sort of see how like someone with bad anxiety or whatever would go down that path. And it could be really dark. Yeah, for sure.

Scott Benner 1:13:17
Well, all I'm left is to ask you if you can access your, your old way of speaking and the oh gosh, no, you can't though, right? You sound so like, your, your your, your accent is so vanilla. Like I don't even know how to like, Yeah, somewhere like you don't I mean, like, I don't know that you're Canadian?

Roisin 1:13:39
Well, that's what I think Canadian sound like at least, Ontario. Ontario wins. I guess I should say urban Ontario wins. I think the rural ones can have a bit of a Twain or something. But I find the Ontario accent really? pretty flat.

Scott Benner 1:13:54
Yeah, it's great. Listen, I liked it. I'm just saying that I missed the things that usually happen when I talk to people from Canada. You know?

Roisin 1:14:05
Maybe it's because my parents are Irish. I don't know. Maybe like I haven't quite as like, absorbed as much of the Canadian isms. I don't know you

Scott Benner 1:14:13
didn't draw out an A or anything? Yes. You know No. Didn't say yeah, at the end of one sentence not of one sentence is a bit of a letdown machine. I'm not gonna

Roisin 1:14:24
it's not a thing we do. Yeah.

Scott Benner 1:14:25
It's the like, oh, are ya like after it's like Minnesota Wisconsin. Canada like that A at the end of look at you Ontario. Special.

Roisin 1:14:42
All right. Yeah, that's me. Oh, my gosh.

Scott Benner 1:14:44
All right. Is there anything we didn't talk about? We should have?

Roisin 1:14:47
No, I think I think it's good.

Scott Benner 1:14:49
Did I let you down by losing my mind to the middle or were you okay?

Roisin 1:14:53
No, it's okay. I fully expected a Scott ramped at some point.

Scott Benner 1:14:58
I just I really do appreciate Thank you. I feel very seen by that. Count that comment from you so much. All right, well, thank you so much. Oh, hold on one second for me. Okay.

Roisin 1:15:11
Sure. Thanks a lot.

Unknown Speaker 1:15:12
Yeah

Scott Benner 1:15:18
huge thanks to machine for coming on the store coming on the store. Where does that show podcast? What was I gonna say? Huge thanks to Rashid for coming on the podcast and sharing her story was I shouldn't maybe I was saying share before, but who knows. I also want to thank Omni pod, the makers of the Omni pod dash and Omni pod five and remind you that at my link, Omni pod.com forward slash juice box all can be completed. We're also going to think the contour next gen blood glucose meter. Arden's been using a contour meter forever and ever. I actually just changed the battery on hers the other day, so that she could go off to college with a brand new battery in her contour meter contour next.com forward slash juice box. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. A diabetes diagnosis comes with a lot of new terminology. And that's why I've created the defining diabetes series. These are short episodes, where Jenny Smith and I go over all of the terms that you're going to hear living with diabetes, and some of them that you might not hear every day, from the very simple Bolus up to feed on the floor. Don't know the difference between hypo and hyper will explain it to you. These are short episodes, they are not boring. They're fun, and they're informative. It's not just us reading to you out of the dictionary, we take the time to chat about all of these different words. Maybe you don't know what a cool small respiration is, you will when you're done. Ever heard of glycemic index and load haven't doesn't matter. You will know after you listen to the defining diabetes series. Now, how do you find it, you go to juicebox podcast.com up top to the menu and click on defining diabetes. You'll be able to listen right there in your browser. Or you'll see the full list of the episodes and be able to go into an audio app like Apple podcasts or Spotify and listen to them at your pace. Download them into your phone and listen when you can. The defining diabetes series is made up of 51 short episodes. That will fast forward your knowledge of diabetes terminology