#504 Allergic to Insulin
Sacha Cardinal has type 1 diabetes and is allergic to insulin.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to Episode 504 of the Juicebox Podcast.
I'm squeezing an extra show in here this week and why now it's because Sasha is allergic to her insulin. Well, she was. And she, well, she is. But now there's a workaround. And it's fascinating. Sasha just graduated from high school, she lives in Canada, she is allergic to insulin, allergic means painful raised welts, and decreased efficacy. What follows is her story. And we'll find out together what she was able to do. It's a really interesting story. Please remember, while you're listening 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. I want to thank new members of by me, I don't even know how to say this. There's a buy me a coffee link where people can become members of the show. And part of becoming a member is getting a shout out on the show. So the first time you become a member, get your name, shout it out. So I've got a list for you here before we get started.
Thank you so much to Jeanette, Jennifer, Daniel, Grace, Julie blue, Leah, Melissa, Larissa, Alison, Marilyn, Shannon, Sue, Nancy, and Jessica for becoming members and supporting the show. Like you are really amazing. Buy me a coffee calm forward slash juice box. And a sincere thank you to many of you who just bought me a couple of cups of coffee and didn't do it annually. But still, it's really amazing, but out to use some of your money to buy hard drives, hubs, and a few other computer based objects that I need computer based objects who says that anyway, thank you. Right. Before we get started, I'd like to remind you that if you go to T one d exchange.org, forward slash juicebox. And fill out the survey completely. The show benefits and so to you. As a matter of fact, I saw someone on Instagram today who became a T one D exchange supporter they went they filled out the survey the survey super simple, I'll tell you about it a little later. And they are in the middle of doing a trial for a CGM company testing their adhesives. It's kind of an interesting little thing that came from being part of the T one D exchange, you don't have to do stuff like that. The T one the exchange is happy to just have your, your brief questions to their to their short survey. By the way, you have to be a US citizen type one or US citizen caregiver of a type one. But anyway, other possibilities do pop up afterwards. It was so cool to see someone online doing something for everyone with Type One Diabetes. And when I kind of liked their posts, they said I'm here because of you and I thought oh, that's really cool. So T one d exchange.org. forward slash juicebox.
My name is Sacha Cardinal. Sacha How old are you? I'm eight in October. Wait, you're definitely not eight years old. So I didn't hear everything you said. I don't think how old are you? I'm 18. In October in October, you'll be 18 Are you still in high school? Ah, yeah. I just graduated in June. Congratulations. Thank you. Like last month? Sorry. Like last month you graduated? Yep. It's kind of exciting. I mean, is it exciting? Or is it just like, oh, now that's over? Yeah, more like oh, it's over. Are you Do you have plans for university? Yeah, I'm going to you Ottawa. Nice. Congratulations. You have a focus something you're thinking about studying. criminology definitely. criminology. Okay. Excellent. What made you interested in that? I really know. You're definitely doing it. But you're not sure why. Yeah, exactly. It sounds like my days plans. How old were you when you got diabetes? I was two years old. Oh, you have been rocking this for a while? Yeah. So you're
Unknown Speaker 4:40
18
Scott Benner 4:42
just about we'll call it anything. Your you've had diabetes, pretty much your entire life. Yeah, What do you remember about it from when you were little?
Sacha Cardinal 4:55
Not a lot. Mom was doing most of the work. When I was little, so I just remember having to give insulin when I was eating, and that's about it.
Scott Benner 5:06
No kidding. So it was sort of really part of your life, not something that you think of is this extra thing that happens? No, definitely not interesting. Okay. My daughter was also to and she was diagnosed, and she's going to be 17 in a couple of weeks. Oh, wow. So you guys, probably what were you 2005? Maybe when you were diagnosed? Ah, yeah. January genuine. rarey. 2000 602 1006. Yep. So my daughter was diagnosed in August that year. So you guys really have almost had diabetes the exact same amount of time? Yeah, like seven months. That's interesting. So. And Arden, my daughter, Arden has a very, I think, similar experience in that she doesn't. I don't think about diabetes. In the same way who somebody who maybe was diagnosed when they were a little older, and and remembers like a stretch of time not having it may describe it. So the entire time you were young, were you using? Would you start with needles and how did you start managing? Like, what was your mom using when you were a little?
Sacha Cardinal 6:18
Um, when I was when I first got diagnosed? I had the needles, but then when I was four, they gave me the insulin pump.
Scott Benner 6:28
Okay, so you had a pump since you were four years old? Yes. You know how old my daughter wasn't? She got a pump. Sorry. Do you know how old my daughter was when she got a pump? No, she was for a while. guys might be twinning the whole thing here. And we'll see as we go. So what pump were you using? When you were four? Had the Animus? And you're in Canada, correct? Yeah, yes. Okay. So your health system is a little?
What's the word I want? It's slower to make changes, maybe. Is that fair? Yeah, I think it would be fair to say, okay,
so you're using animist pump since you were four? And Gemini real issues, managing your diabetes? Was everything pretty normal?
Sacha Cardinal 7:21
everything's pretty normal except for the allergy. When do you have to insulin?
Scott Benner 7:27
Yeah. So is that the entire time? And since you're too, or is it something that just started to happen? No, it just started to happen. Like, what, a couple years ago? Okay. So maybe, I'd like to know about that. What was the first thing you noticed?
Sacha Cardinal 7:46
Um, well, it started, it wasn't really an allergic reaction. I just started to get really big bumps on my legs to begin with about almost five years ago. And then last year, in February, I got hospitalized in DK a. And that's when they realized that something bigger was happening than just like little reactions of resistance to insulin. And so in June of 2020, they did some tests and testing and everything. And that's when they realized I was allergic. I had I was like, reacting and everything. And then February this year, that's when they did the test to see if I was allergic to insulin.
Scott Benner 8:38
And they found out I was okay, go back to the bumps on your legs, like mosquito bites. Um, no. Bigger than that, like a big bruise, like a big bruise where they raised up. Yep. Do they hurt? Yeah. Okay, all over just your legs. Like anywhere, I would inject actually Oh, at injection sites. Gotcha. Okay. What kind of insulin are you using? Where are you using?
Sacha Cardinal 9:10
I was using the Nova rapid at the beginning, and then they change me to all kinds of insulin, but they would all do the same thing
Scott Benner 9:17
no matter what. Okay, so, just I'm gonna just talk to you for a second. I know you're young. So I don't want you to be upset. But when you realize that you're allergic to the only thing keeping you alive, what do you think about?
Sacha Cardinal 9:35
Um, well, the first thing that came to my head, like I already have diabetes, why do I have to have like an allergic reaction to it as well?
Scott Benner 9:45
Did you ever make the distinction in your head? Like, what happens if I can't use the insult anymore?
Sacha Cardinal 9:51
Yeah, it's definitely something we were all thinking about.
Scott Benner 9:55
Yeah, yeah. So but you felt like there was a way to deal with it.
Sacha Cardinal 10:01
Yes and No, at the beginning I did but then again, I wasn't sure anymore.
Scott Benner 10:07
Okay, so when it first happened, you thought this is just a problem, we'll fix it. Yeah, right. Okay. How long does it go on before you start worrying that? Maybe there's no fix? Um, a couple years, about three years. Wow. So when I realized that nothing was gonna happen, so for three years, you're just using insulin, and it's making these big welts on you? Yep. did that affect how you ate?
Sacha Cardinal 10:36
Um, it did in the beginning, but then after a while it did. Um, because the insulin wasn't being absorbed in my body. And so my always high but I didn't want to give myself insulin either since it was hurting after a while. So sometimes I would like skip meals or like, skip snacks to like, eat something that doesn't have high carbs or things like that.
Scott Benner 11:01
Okay, so, so not only was the the raised up welts happening, but you weren't getting the effectiveness of the insulin that you would expect. No, exactly. Did anyone ever tell you what the raised up bumps were? Um, it's inflammation in the fat tissues. Okay. All right. Well, this seems like scary. Like, I know you're young. So you're probably all like, it'll work out because that's what happens like something. Something goes wrong, and then we fix it. And that's life. But that's frightening. Like, were your parents like, freaked out? Like have they told you since then, like that? They were really worried or?
Sacha Cardinal 11:41
Yeah, my mom was stressed out that I know for sure. But I think which because firming really know how many people would be allergic to insulin like, in the world or anything. Like for me, it was just another problem that doctors knew about right? But then we actually realized that only three people in the world were reacting that like having this treat, like to insulin the way I did,
Scott Benner 12:09
yeah, it didn't matter which insulin It was. It just you have this reaction and really just three people like you're one of three people. Yep, Sachi. That's incredibly unlucky. That sucks. Yeah, wow. really does No kidding. I'm sorry. That's terrible. Hey, just for fun for a second. How does your mind know? She's right there. But how does your mom act when she's stressed out? Um, she's not herself. That's for sure. But, um, how can I say it? You mean? How can you say so? She won't get mad at you when you say it. Is that the question? Yes. Yeah. Um, she starts acting up, if that makes sense. That's how you talk about children when they get upset when they're tired. Yeah, exactly. Okay, that's fine. We won't tell her that part. You she's gonna listen, but it doesn't matter. We're just but I mean, my point was that it's stressful for everyone. Do you live in like a kind of like a standard families or dad? Do you have a dad and siblings?
Sacha Cardinal 13:13
Yeah, I do. Well, they're separated. But I do see my dad every week and then my mom and the other week. Okay. Do you
Scott Benner 13:19
have any other brothers or sisters? Or do you have any brothers sisters? Yeah, I actually have two brothers and one little sister. Do any of them have any autoimmune problems? Nope. Nothing? celiac? Nothing at all. thyroid? Nope. Does their hair grow weird and that's not an autoimmune thing. Nevermind. Okay, so Okay, so you really are like the one in a million here? Yeah. Okay, so. So what ends up being the fix for this. Um, so they actually inserted a dire port in my belly. Okay, in the domino cavity. Um, so that the insulin would go, would like be absorbed by my body, but not in the subcutaneous part of it, since that's where I was reacting. So that's so in the end. It's not the insulin. Well, it is you're allergic to the insulin, but it's in this subcutaneous system, like, that's where it's bothered. So if you get the insulin deeper than that in your body, it's fine. Yep. Wow. So so there's a I've been looking online since I knew you were gonna come on. So there's this like, Did you get to see it before they put it inside? You? Know what? Sorry. Did you get to see the diet board before they put it inside of you? I did. Did it freak you out? Yeah. How big is it?
Sacha Cardinal 14:58
Um, it's sex. Should not that big it's like the size of like, I can't even. I'm okay, you know, like that little button you have on your gene so you can type them up. Yeah. about that size. Yeah,
Scott Benner 15:17
it's like so a button size. I was hoping we're gonna pick a coin like a Canadian coin that had a funny name. That was my hope when you started describing the size of it. I don't think you have like a loonie, or is that England? What am I thinking of? Yeah, the loonie, but it's smaller than that. That's what I was hoping you were gonna say just so you know. Okay, so it's about the size of a button. And is it very thick? Or is it very thin? What is it?
Sacha Cardinal 15:44
Um, it's thick, since it has to go all the way to the abdominal abdominal cavity. And it also has to come out of my body. So I can like, put the little port on it so I can inject. Okay, so definitely tick, but nothing more.
Scott Benner 16:03
Gotcha. So this button is under your skin, but it has a port that comes through your skin. Yeah. Ah, and then how do you handle swimming, for instance?
Sacha Cardinal 16:18
Um, you do have to cover it for a little bit. But then after a while, you can just
Scott Benner 16:26
put the like reconnect when we're just like you want to take like a wine cork and stick it over top of it or? Um, yeah, well, we have what they call the ghetto. What's it called? I'm sorry.
Sacha Cardinal 16:42
together. It's just like, a clear cover that you put on top. Oh, teraterm. Yeah, exactly.
Scott Benner 16:50
Are you from Canada originally? Are you from Europe? Canada. Okay. I love your accent. And your mom's is thicker. I like it. No, don't be sorry. I'm having a great time. What do you mean? Sorry? You apologizing for how you talk? I don't like my accent. Really? How come?
Sacha Cardinal 17:06
I don't know. It sounds like French. So it's like, I don't know. I sound I sound like weird when I talk in English. Oh,
Scott Benner 17:15
I see. So what's so you speak French at home? Usually? Yep. Interesting. Alright, so hold on a second. Introduce yourself again. Like we're restarting the podcast and say you have type one diabetes, but say it in French? Hello. manasi Sasha gullfaks. She jiobit Super. Oh, wow. So English is not your first language? No, it's not. Ah, do you speak it just at school? or How do you do? How do you do that?
Sacha Cardinal 17:51
Um, yeah, basically just at school or like at work when like, I have clients that are English.
Scott Benner 17:55
Interesting. I don't know why you don't like your accent. They're like, are you aware of it? Yeah, I am. So so it's uncomfortable for you to talk to me like this because you're thinking I sound funny.
Sacha Cardinal 18:09
Yeah, like when I compare myself to others, I'm like, Oh,
Scott Benner 18:13
I shouldn't do that. Nobody cares. I have to be honest. I know. You're young. And it feels like everybody like looks at each other. And nobody really, it doesn't matter. Nobody. It doesn't matter what anybody thinks. I think your voice sounds great. So don't worry about it. very welcome. Alright, so they've got to put this thing in your abdominal cavity. And this is a lifelong situation, right? There's no better answer than this. This is the one. Oh, yeah, this is the one Okay. Does it hurt? No. All right. Can you feel it through your skin? I could at first but not anymore. Okay. And so, are you getting much better reaction to your insulin? Like did your Basal rates change and stuff like that? Like, do you need less insulin now that it's being absorbed this way?
Sacha Cardinal 19:08
Yes, and that's another type of insulin, I get the same amount of insulin except it's less concentrated.
Scott Benner 19:14
Oh, okay. So this is not you didn't go back to Nova rapid or something like that? No, you can't with that system. So what are you using? Um, I can't tell you the name because it's in Wait, like cuz you're a spy. And if you tell me you'll have to come kill me or something like that or what? Cuz you
Sacha Cardinal 19:36
know, um, cuz everything that like the insulin is actually from Germany. Because that's where they have that Daya port and like from Europe. Oh, so everything on that low like insulin bottle is written in Germany, you're using,
Scott Benner 19:53
you're using it insulin, and the bottle is not in any language that you speak Nope. So you would tell me what it was called. If you had any idea what it was called. Exactly. Well, hold on a second. What happens if you like, need to go to the pharmacy and ask for it? Um, I bring an empty bottle. This morning this lady. Yeah, exactly. So I I just googled Daya port insulin Germany and under images you're like the fifth hit. Oh, really? Yeah. With a picture of you wearing a shirt from the office. Oh, the one from to Okay, so you have Wow, this is fascinating. I I just thought for certain I'd see the insulin, but it's just not there. At the Ottawa Citizen calls you diabetic team, diabetic teen allergic to insulin injections undergoes first in Canada operation. Wow, the ones ever had this before in Canada, but you
Sacha Cardinal 21:09
know, actually no one on I call it the left side of the planet. So like the only place that has it is
Scott Benner 21:18
Europe. What do you think they call their side of the planet on the right side of the planet?
So beginning to really like you. Alright, so you're saying that you look, I know, this isn't about diabetes. But when you look at a map, canvas on the left side? Yeah. That's really interesting. Do I need this? Anyone else say that? Or is that just the thing you say? Um,
Sacha Cardinal 21:51
I never heard anyone else say it. I just started using that phrase the other day when I was trying to explain that only Europe had it. Okay, but I was losing my words. And then I was like, well, the left side of the planet doesn't have the diet for
Scott Benner 22:07
soldiers just in your head and not out loud for a second. Explain that in French in your head. Does it come out differently when you think about it in French?
Sacha Cardinal 22:22
Not really, actually. When I think about it, no.
Scott Benner 22:25
Okay. All right. I was just wondering if it was one of those things where you just didn't have the words. And so you just read for the closest word you had? You got a little softer. Do you know I get? I'm not sure why your voice got softer. Is it good? No. It's still sort of the same. I think sometimes you just get excited and you speak more loudly than when you're talking at a normal rate maybe? Yeah, that might be Yeah. All right. So. Okay, how long is the surgery that puts in the port?
Sacha Cardinal 22:59
So it's about 20 minutes for in Europe since like they already are used to it. But in Canada took an hour and a half.
Scott Benner 23:11
Come on Canada. Right now. That makes sense. Were you asleep for it? Or was it a local? asleep? you're asleep? Okay. Scar? Yeah, I do have one. Does it suck?
Sacha Cardinal 23:29
I think it does. People are telling me it doesn't really show but
Scott Benner 23:33
my daughter had to have a little cyst removed from near her fallopian tube, like a year or two ago. So she has these little scars on her belly now. And I have to say, I don't think she cares. Like I think she got used to it.
Sacha Cardinal 23:49
Yeah, that's what everyone keeps telling me that I'll get used to it. Yeah.
Scott Benner 23:52
What do you think you think you'd rather not have a scar on your stomach? I
Sacha Cardinal 23:56
definitely would rather not have one. But, but saving my life right now. So
Scott Benner 24:02
yes. It's an incredibly interesting thing. Isn't it? Like you have a problem? That if it wouldn't, have you thought about this, like, if you were born in 1950, they probably would have been like, we can't help you.
Unknown Speaker 24:17
I know. That's really crazy, right? Yeah. You're lucky in a weird way.
Scott Benner 24:25
But you don't need like, it's how you think about it. Right? You can either say I'm unlucky because I got diabetes. I'm incredibly unlucky because I'm allergic to insulin, and apparently no one else is. Or you can say that that was going to be true no matter what. And I'm really lucky that the technology and the medical understanding exists to mean that they saved your life. Really? Yeah. It's pretty crazy. I would think of it as being lucky if I was you. I'd call that my lucky scar.
Sacha Cardinal 24:54
Yeah, well, I like to say that I'm only like one of like three people.
Scott Benner 24:59
Yeah. And I don't know those other two people. So basically, you're the only one. Yeah. Just exclude that if you want. Oh, are you the only one in Canada? Maybe we could get you to the number one ranking somehow if we think about it. Yeah, the only one in Canada. Nice. So you're like a Canadian superhero, basically. Yeah. Right. That speaks that speaks French. Which is your superhero name? Um, I didn't think of that. No. All right. If it comes to you, let me know. So this thing goes in, you're able to begin using it right away after the surgery. And immediately, you can dial your blood sugars in and get your blood sugar better than it was. Yep. And no bumps. No bumps. Was that exciting? A little or?
Sacha Cardinal 25:54
At first, I was a little bit anxious because I was like, yeah, maybe right now. It's not reacting. But what about in like, a couple injection and then it's doing like big bumps again. It's a reason now it's been almost a month.
Scott Benner 26:12
You only had this month? Almost. Yeah. Three weeks? Wow. You're on the podcast because one of the listeners of the podcast, sent me a note and told me about you. I didn't realize that it only been a month. Yeah. Wow. You're like brand new, basically. Yeah. But you stopped you've been able to stop keep being concerned that it's going to stop working. Yeah, cuz right now it's perfectly fine. Along nice. Do you use a glucose monitor by any chance? Sorry, do you use a glucose monitor like Dexcom or a Libra or anything like that? Yeah, t Dexcom. t 66. Okay, so you can you really see the difference right now in your blood? sugar's Uh, yes. I went from 30 to four Wow, whoa, whoa. Oh, so you your blood sugar was you How long had you been leaving it highlight that? Three years now. Oh, holy. Can we curse? I mean, I can't if I want to. It's my I just don't know you're under age, but I was gonna say holy.
The T one D exchange is looking for type one adults and type one caregivers who are us residents to participate in a quick survey that can be completed in just a few minutes from your phone or computer. After you've finished the questions and they are simple I did in about seven minutes for Arden. You will be contacted annually to update your information and to be asked further questions. This is 100% anonymous, HIPAA compliant, and does not require you to ever see a doctor or go to a remote site. Every time someone completes the process using my link, the podcast benefits. So if you've been looking for a way to help T one D research, the podcast or both, nothing could be easier or more beneficial. T one D exchange research has led to increased insurance coverage for blood glucose meter strips changes in the ADA, changes in the American Diabetes Association guidelines for pediatric a one c goals. This is a big deal whether you know it or not. The FDA is expansion of Dexcom labeling to include finger stick replacements and Medicare coverage of CGM devices. And there's a lot more going on. Like I said, I saw somebody online the other day involved in a in an adhesive trial. They've got like four different spots on their arms, and they're just helping out. Now you don't have to do that. You can just answer the questions and be done with it. But if more opportunities come up, and you're interested, they'll let you know. T one d exchange.org. forward slash juicebox. There's links in the show notes. Links at Juicebox Podcast comm it only takes a couple of minutes to complete the survey. That's crazy. Say holy French for me. Holy cow. Wow, that was a letdown. Okay. You're Wow, your average blood sugar was in the five hundreds. And your a once he was like 21 ish. Um,
Sacha Cardinal 29:27
well for us it goes up to 14 so mine was higher than that. But we don't know the exact number.
Scott Benner 29:35
Do you feel a lot better? Definitely. Yeah. Kidding. So were you like, brain fog? Like, didn't have a lot of energy, all that stuff? Yeah, and I was always grumpy. Yeah, no kidding. Always grumpy might be the name of your episode. But that was um, wow. And but that was your only option. Yep, I'm sorry. That sucks. Well, your life is about to get so much better. Yeah. Good for you. Well, no kidding. Don't go crazy. You don't I mean, dude, I'm saying, like don't start running around with weird boys and doing stupid stuff and yeah, I mean maybe it's too late for that. Oh by the boys already weird. Yeah, joking. Wow Do you feel like can you describe how you feel like thinking about it? relief? Mostly. Um but definitely here say it again I'm sorry. happier happier. Yeah relieved, like in the big sense like did you think you were gonna die? Um, after last year? Yeah, I did. Is it hard to keep taking school seriously and worrying about things that you think aren't gonna matter? Because you won't be here?
Sacha Cardinal 31:14
Um yes and no. Cuz I still wanted to in my head like sometimes when I would stop and like think about it, then I was like, yeah, there's big chances that I won't make it to my 20s. But on the other side, when I was just running around doing things and not thinking about it, it was more that while you have to get your grades up to go to university, you have to do this. Like, I wasn't thinking about not being able to see that time either.
Scott Benner 31:52
Was it difficult to keep your grades up with your blood sugar that high?
Sacha Cardinal 31:56
Yes, and it was hurting so bad that the only thing that was going through my mind when the teacher was talking or anything was the pain and the
Scott Benner 32:07
pain from your your blood sugar being from the injections, oh, from the injection sites. So you were caught in a loop, where you couldn't give yourself enough insulin to bring your blood sugar down. So your higher your you know, all the things that go along with a very high blood sugar. And then on top of that each and every one of your injection sites was in pain. What kind of pain sharp stabbing dull, achy?
Sacha Cardinal 32:38
Um, there's actually no word to describe that pain, because it's like, all mixed together.
Scott Benner 32:45
Did it burn it? It did. I'm so sorry. And so every time you thought to give yourself insulin, you knew you're gonna create another one of these pain centers? Yeah. Were they better anywhere on your body over other places? Or did it not matter where they were? No, it did not matter. Holy crap. Wow. Yeah. Oh, geez. Did you cry a lot? I did. I was just thinking I would cry a lot. You know? Did were your friends aware of your situation?
Sacha Cardinal 33:20
Some of them more. But the ones that were aware of it, they didn't know the full story. And they did not know how bad it was? Or how about how bad it was like getting? I should say,
Scott Benner 33:36
if you don't have an answer to this next question, that's fine. I just want to ask it. Is there conscious thought that goes into how to pretend to not be in pain?
Not really, but are you trying to just act like it's okay.
Sacha Cardinal 33:56
Yeah, that's mostly how I was trying to cope with it. But it was always there.
Scott Benner 34:05
So walking, sitting, didn't matter. Walking
Sacha Cardinal 34:09
was the worst. Because especially when I was injecting all my legs, or my arms or like even the belly, like sitting down, getting up walking around, like everything was like my legs were moving, my arms were moving. My belly was moving. So like, you could feel the bumps. And then sitting down. It's, um, you were like, kind of relaxed, like you're relaxed when you're sitting down and everything. So you could feel the pain that way as well. And then standing up was putting so much pressure because there were bumps and they were heavy. So you could feel the pain and the pressure from these sending up as well.
Scott Benner 34:53
Oh, so not only were they painful, but they were pulling on your body too. Yep. Could you? Is it gonna sound strange? Or maybe it won't? Could you feel them when you're sleeping? Um, sometime? Yeah. Yeah. Like, do you get that feeling like you're never quite completely asleep and you're aware of the pain even when you're?
Unknown Speaker 35:14
Yeah, yeah,
Sacha Cardinal 35:15
I would get the max I had of sleep was five hours.
Scott Benner 35:21
Wow. And it's been going on for three years. Yeah, the pain and everything three years. And today you don't have any pain? No. Wow. That's amazing, isn't it? It's kind of magical. But there's a problem with all that, which is, some of this isn't paid for by?
Sacha Cardinal 35:43
No, actually, nothing is paid for right now.
Scott Benner 35:46
Nothing. So the surgery for the for the implant that wasn't covered by what do you guys call it the health? What do you guys call that? Um, Health Canada, Health Canada. Yeah. Health Canada, except for Sasha is what it should be called. But so the surgery your mom and dad had to pay for.
Sacha Cardinal 36:09
So on that side, we were lucky. The company that that I import, which is called a clash. They decided to pay for the surgeon from Germany to be flown over here. They also paid for the surgery. And they're paying one year of
Scott Benner 36:37
how can I say it like insulin fight and everything? Oh, the the site? So the tubing and all the other stuff that goes with it? Yeah, exactly. Gotcha. But then after that. Let's just say Justin Trudeau is not willing to pay for it. Is that right? Oh, yeah. Can we put it on him? Is that possible? He's getting gray. Haha. I know nothing about the man. I don't mean but I just I just pulled up a photo of him real quick, late. I was like it was beard back. Right? Must be a stressful job. So so we know maybe I'm maybe I'm getting ahead of myself. I was gonna say you need a plan here. But maybe not. You're independently wealthy, and none of this matters. I'm like, you guys have not really dollars in the bank. Sorry, you guys have like millions of dollars in the bank? And you just? I wish not. Okay, so. So there's costs involved here that the health care system in Canada won't pay for? Is it just a matter of you having to explain it to them? Or have they already had it explained? And they were like, No, thank you. And I
Sacha Cardinal 37:43
know, we explained a lot. And then we sent more letters that then more explanation. And then I think we sent about three to five letters to them.
Scott Benner 37:55
Okay. They're still not paying. They're just saying no. And the bigger they said the the biggest problem is the cost of the insulin that we don't know the name of Is that right?
Sacha Cardinal 38:08
And all of the others, so well together. I think it's a no sorry, all together, like the slides and everything. It's $15,000.
Scott Benner 38:17
So for the year, the insulin and the sights together are like 15. Yep. You're gonna have to get a job. No, I'm just kidding. We're gonna have to figure out something to do. Right. So yeah, at the moment, you have a GoFundMe? But but that's, that's not the, that can't be the answer forever. So no, exactly. Yeah. Yeah. See, you have to find a way to explain to Canada that you need a different help. Like, if you had like a weird, something else that nobody else had? They would cover it, I would imagine. I mean, I don't know. I think so. Hell Canada's special. I'd say is that what? What what are some of the things you've guys have talked about to try to figure this out? Like, if you thought of moving to other countries, or what have you considered?
Sacha Cardinal 39:17
We haven't really thought about anything else. You know, we were talking about the GoFundMe and things like that. Gosh, and the doctor said, like, if that doesn't work, then we'll try and find something else. But right now, we don't really have a plan. No. That's
Scott Benner 39:38
that's not fun. So do you feel like this is something that's going to get worked out? Or what's your level of hope for this? 5050 Yeah, you think maybe they'll help you and maybe they won't, but you don't have any reason to think one way or the other? Yeah, exactly. Gotcha. Wow. Well, I mean, I'll make sure people know about the GoFundMe for certain here. But I just feel like the bigger thing to do is to find someone who knows how to how to get inside of Health Canada and make people listen. And as crazy as it sounds, I might know somebody. So I'm gonna ask that person when I get done talking to you today, and see if they have any suggestions for you. They've had a little bit of luck getting coverage for CGM in Manitoba. And so they I think they know how to maybe talk to people or move them a little bit. And I'm wondering if they wouldn't have some suggestions for you. So I know of course, it's actually strange as we're talking about it. I think on Friday, this week, the episode goes up with Trevor about, about what they did in Manitoba. I'm actually gonna look real quick. I said real quick. And then my internet slow down. Yes. On the ninth. I'll put up an episode called Manitoba Strikes Back. So Oh, wow. Yeah. So and there's a pretty compelling blog post that he wrote about how to how to make change that I'll make sure you have to. Okay, so is there? I mean, is there anything that you would want people to know about this or anything that I haven't thought to ask you?
Unknown Speaker 41:37
Um, no, my thing that was we did all at the same. Yeah, we did a good job. Yeah. You're really?
Scott Benner 41:48
You're brave for doing this and talking about it. You're all your friends? No, I guess it made it to the newspaper. Right. So everybody knows. Yeah, we did. What was it weird to be like, like, famous like that?
Sacha Cardinal 42:04
Um, it was, especially at the beginning, because I also got hospitalized for four months. And then starting to get messages from my friends like asking where I was, and things like that. So I was like, Oh, well, I guess. Now it's time to tell them that I'm actually not doing as great as they think.
Scott Benner 42:25
Oh, I see. You're keeping a pretty private for a while. Yeah. When you're in the hospital, how were they giving you insulin in the hospital?
Sacha Cardinal 42:36
They weren't giving it through IV. So into my veins so that I wouldn't react. And was that working? Well?
Unknown Speaker 42:44
Oh, yeah, it
Scott Benner 42:44
was actually that's how they got my numbers now. At first. What, um, what is it like being in the hospital for four months? Um, as stupid as it sounded, was exhausted. exhausting. Okay. Was it good? Tell me why. Sorry. That's, I was gonna say, Tell me why. But it sounds like a fight broke out about a baguette in the background. Yeah, my mom and my brother are playing. But what was exhausting about it? Um, well, especially with COVID. Right now, you can't really see anyone inside or outside, you can't go out you can't do anything. And then being sitted in a bed all day long, and not being able to move around because you have this big pole following you everywhere. Yeah. made it even harder. You tried to do school while you were there? Yeah, I actually didn't really have a choice. So I wouldn't be graduating. didn't have a choice. I would think you might get a pass. Maybe. Maybe they'd be hoping for one. But they didn't. Well, you still need to learn. I'm sure you learn some very important things while you're in there. I feel more over there. I could be a nurse now. You learn how to be a nurse while you're at the hospital. Like after a while you're like I see how this goes. I could do this. That is really super interesting. Um, well, I'm happy that you have an answer that is, you know, health wise, like forget the rest of the stupid stuff for a second. health wise. It is a pretty exciting time for you must feel like you have a brand new life. Yeah. Good for you. That's exciting. Um, do you have a website or is it just the GoFundMe?
Unknown Speaker 44:37
I just okay.
Scott Benner 44:41
I don't know a lot about GoFundMe. But I'm going to go to it for a second and hit search. And I imagine if I type in your name, sa si ha. And then do I need your last name? I'm not sure I haven't went on it in a while. Well, I'm gonna look on a second. I typed in your name and it didn't come up with you. That's not a good sign. Is your mom there? Are she going your brother? She's still with my brother. She like she beat him up or what do you think is happening right now? I really don't know. How old How old is he? He's 20 Oh, I see. Yeah, yeah, like Yeah. Alright, so I'm gonna your mom's I mean, I'll get a link or something. And I'll put it in the show notes of the podcast so people can find it. Okay. Thank you. Yeah, of course. I really appreciate you doing this. It was nice of you to come on and tell me about this is really like such a rarity that it's kind of crazy. I know. It's your life. So it doesn't feel that odd but it's very strange to hear. So no, thank you for having me. No, it's my pleasure. Well, how about that, huh? allergic the insulin and have is type one diabetes. That is as bad as frightening as it gets for me. I don't know about you. If you'd like to help support Sasha, she has a GoFundMe and I'll tell you how to get to it at the very end. For now, thanks so much for listening. Thanks for considering going to the T one D exchange and joining the registry at T one d exchange.org. forward slash juice box. For those of you who became members of the show or bought me a cup of coffee, thank you so much. Buy me a coffee.com forward slash juice box.
We'll put a link to Sasha's GoFundMe right here in the show notes and a Juicebox Podcast calm on the episode page for this episode. Her name is spelled s AC ha that will help you the title of her GoFundMe is help Sasha have a normal life without worries. There's a picture of her in her hospital bed. When you get there, you'll see it. Or you can go to go fund dot m e forward slash d f zero c a six A B, but it might be easier to get the link for my website and click on it. Help Sasha have a normal life without worries. If you're interested head over and take a look. Thank you so much for listening to this episode of the Juicebox Podcast. I'll be back soon with more. Until then, I hope you have a great day.
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