Episode 4: Sibling Perspectives with Karen Walker

Welcome to this as type one real life type one diabetes with your hosts. Colleen and Jesse. I'm calling Mitchell and I've had type one diabetes for 23 years by day. I'm a process analyst in the power industry and by night I'm an author blogger in virtual assistant. I'm passionate about type one diabetes education and showing others that this disease doesn't define me. I'm Jesse Tiggy and I've had type one for seven years. I love hiking and painting and I'm looking forward to working as an engineer after college. My diagnosis has inspired me to take control of my future and learn everything I can about it. Each week on the show, we'll talk about real life with type one diabetes. Bring on cool people with connections to type one and above all. Encourage you to understand that this disease doesn't have to hold you back.

This isn't medical advice. This is life with type one welcome to episode four of this is type one. Today we're talking with my sister Karen Walker. Walker

about what it's like for her growing up with a type medic sibling but first it's time for a wins and fails of the week. So I am up with a win of the week, so it's hit or miss with Dexcom G six sensor restarts. Case in point. The last one I had on only gave me about an hour of usable data before it crapped out with three calibration errors. But the one that I just went through lasted for nine and a half days through the restart. So that was almost 20 days on one sensor and that was just, yeah, that was awesome. That is the wage that is the way you end up with uh, backups. Yeah. Wow, that's huge. I'm excited about that.

Yeah, you should be. I can never get that with the C, the CGM I'm on. Really? Yeah, no, it once it like kinda dies, it dies and it needs to be recharged. It's recharging right now actually. Okay, so that's interesting that Medtronic doesn't let you restart it. I mean, I've heard of ways where you could restart it. But for me it's just never worked out when we, you know, started wearing the CGMs and stuff. So I haven't tried it in a couple of years. But from my past experiences it just doesn't work out for me that well that's too bad. Well you are up with a fail. So you want to tell us about that? I am. So I recently got back from traveling long distance from Southern California.

So I was sleeping in from, you know, getting back and it was this past Saturday and so I fell asleep and I was, I was totally into like not getting up at all. So I fell asleep and around six 30 my patch fell off. Now I was so out of it, I didn't even like realize that it was off. Like apparently it fell off and I just was not having it. So I just put aside and then when I woke up finally, like around eight or so, I was like fully understanding what was happening. So I got up, I changed it out and I tested my blood sugar to start off my day. And so it was three 40 Oh no.

Yeah. So I put in for it right there, but I tested later. I was still 300 and then the rest of the day I was high up until like a little bit after dinner and I had to change out my site again just to get it to work properly. Oh that sucks. Yeah. But I mean I gave a little shot of the insulin so it kinda kickstarted it into like that downhill. Yeah. But like let's get this down. So no, it worked out fine. I mean I was just, you know, bad blood sugar day when you know your site off, go change it out. It's not worth the blood shared mishap. It's not worth just rolling back over and being like, no, I can do it later.

No, cause you could always fall back to sleep, but your blood sugars might last all day. That is a true statement. All right, so this week I've got the hack. So with med Tronic, Neo sets, they get shipped at home and when we get them they come in the box with all of them. The owes. It also comes with the colored part of the infusion set floating around like its own little separate bag. Most people don't understand that these are actually like caps for when you disconnect for like showering or swimming in the lakes and everything. So this summer I've been using them quite frequently. Nice. And yeah, I know it's it, it's a way to keep the um, clean and make sure your body is like dang safe and you know, not getting infected or anything.

So I use them when I go swimming in non clean water, meaning oceans, legs, rivers. I don't use them for showering just because it's clean and it's only like a five minute type of like in and out type of thing. Nice. Yeah. So that's my hack for the week. Thank you. And unfortunately Jesse has to go do some other things right now. So I will be continuing this, the rest of this episode with my sister. Thank you. Yeah, of course. See you later. Bye. All right. So let's dive into sibling perspectives with Karen. Karen thank you for being our first guest. You're welcome. So, uh, why don't you give our listeners a taste of who you are, what you do and your relationship with type one diabetes.

Well, I'm a single mom of a seven year old, almost seven year old and I'm 28. I work at a law firm in port orchard as a paralegal and my little sister that everyone's listening to the one was diabetes. So how do you feel type one diabetes most shaped your life even though you weren't the one diagnosed with it? Um, mostly with food really. Well, I mean we couldn't have anything that was really sugary. We couldn't have, we had powdered milk. We had really like weird bland food because obviously mom and dad didn't know how to really control it at that point. Or you didn't know how to do that either.

So we just had really bizarre food. Actually. That's really interesting cause I don't remember any of that. I mean, we had homemade tortillas from girl scout recipes that I, I know college and that was like a hundred carbs. We're also, well I'm talking about like right when you were two, so I was four. I already, I remember like starting out and that's what it was like. And it was horrifying as a four year old. Yeah, I was traumatized. Why does Billy get a fruit roll up under the lunch and I get an Apple. Like it was just, you know, for a kid it's not very fun. True.

What was the most confusing thing about it? Well, I mean, growing up with it, it's not very confusing. And it was just in the beginning kind of not knowing what was wrong with you because obviously if you were acting very weird and I remember that, I remember you being very lethargic and you wouldn't play with me. And I remember that was bizarre, huh? And then they got the diagnosis. I've never heard that before. That's interesting that you were, you noticed that as a four year old, you're like, why would you play with me? Well, yeah, I wanted to beat you up and you went. So it was like very annoyed. That seems like such a typical sibling behavior coming from now. Well yeah, that was my job as the older sibling.

So that's fair. So that memory obviously sticks out, but what are some other ones that really kind of come to mind? Coming downstairs and seeing mom changing your catheter. My site? Yeah. On your butt. Oh yeah. Yeah, that's fine. I remember that and that whenever the two seizures that you had really stick out to me. Cause the first one, I don't even remember how old I was, but I had to call nine one one because you were having a diabetic seizure and mom was panicking. Dad wasn't there and I couldn't have been more than 10 at that point. Well both of them were in 2002 the first one must have been before we went to Australia. Cause the second one then it wasn't Australia. Yeah, the first one was home. So I was what, 11 then?

Yeah. Yeah it was 11 and then the one in Australia obviously, but they had the pen. I think at that point. So the glucagon? Yeah. Yeah, so I didn't have to call nine one one or that just, you know, that time, but there was still scary. Well, what I remember from that is that we both got Teddy bears out of that ordeal. Oh, that's true. We did it. Yeah. No, I remember that. Yeah. The fire department came with the Teddy bears and I think mine had like red flannel on it when they came to the house here. Yeah. Oh, I dunno. I was still, I dunno. I was so traumatized. I probably don't remember anything. I don't even remember the seizures themselves. I just remember the recovery while you were sleeping, right?

Yeah. It's not like you're exercising or something. Then just fell over and you were sleeping and then we found you like that. I think that's back then the seizures to happen because I didn't have a really good feeling for when I was going to go low. You absolutely did not. Are you serious? You were awful. Hypo unawareness. I had that major. Yeah. I really wish that I'd had a sensor back then. Mom probably does too. What is the biggest lesson you've learned from diabetes or growing up around it? I think probably because of that it's a bigger deal than people think it is. Like everyone makes jokes kind of about it. Like, Oh, do you know, do you need that? Cakery good. Diabetes like it's a whole lot more than that and it's actually pretty deadly and people don't understand that and there needs to be a whole lot more awareness about it.

Yeah, I totally agree. And that makes me testy when I see those jokes because people think it's funny and it's really not. Especially on Facebook when family members. Yeah. Like you should be more aware of this. Like she's had this for one 24 25 years. Like come on now, 23 right now coming up on 24 Oh, I don't even know how old you are. Oops. Nice. You're one. You're always going to be 16 to me and you know that. I know, but that is just terrible. Why? Because I'm 26 I just got kicked off dad's insurance. Oh, that's true. Yeah. Welcome to the club. I know. And so lucky though that we had dad's insurance.

Yeah. Yeah we are. You were especially, there's a lot of talk about, uh, the death sentence at 26 for type ones right now because once they're off their parents insurance and they don't have like corporate insurance from a job, they're screwed. Yeah, that's true. It makes me mad. So moving on on our questions, um, what's still baffles you about type one diabetes? I kinda wish they would've had done being able to have more research done at this point. Like, and figure out a way to actually like not cure it and per se, but manage it better than you do. Like, I don't know, some like thing that goes in your pancreas itself that just like, Oh, like a pink or I don't, I don't, I don't know. Something like that. You'd think that with how they're doing medically and other areas, they would have had more progress in this particular area.

That's a really good point because I've heard that the all of the research money is going into cancer and HIV and so they're like, we don't need to do any research on type one diabetes because cancer and HIV are the big ones, but type one is becoming a bigger problem. Yeah, and there's just, I don't know. It's weird to me you'd think that because when you first started with our diabetes at two you are giving yourself shots. Yeah. And even now you still have to use a needle in some respect and it's been 20 plus years and to me that's a little ridiculous. There should have been some more progress to this point with it. That's kind of why I want to get into more advocacy and try to push that along. There's like pancreas transplant procedures and islet cell therapy for newly diagnosed people.

There's a push to do more islet cell therapy or some kind so that their islet cells can last longer and that way they stay in the honeymoon phase longer. Hopefully in the next few years they really start doing more research and putting more effort into it. That'd be nice. But I mean they've been telling us cure five years away for the last 50 years. So I don't, I don't have much hope. No. So keep plugging along I guess. Yep. So a question Jesse had for you, um, she wanted to know, do you wish that you had done anything differently when it came to dealing with me as a type one? Sibling I mean sometimes I wish I wasn't such, but at the same time who's to say that I wouldn't have been like that anyway.

Okay. If you didn't have it because you were my little sister and you were, you know, we fought obviously obviously, but there are some times where I did feel bad cause I was a jerk. So that's fair. That's fair. I'll take that as a belated apology right now. No, I don't mean it. Glad we cleared that up. Uh, do you have any advice for kids and teens with siblings who have type one? Probably especially in the beginning when you know, the parents are really spending all their time on that particular kid to understand that it's not because they're getting special treatment. It's because they need to have that attention, you know?

And it's not anything towards the other kids, it's just how it is. And then for parents to really make the other kids understand what's going on and still take them out by themselves and have special time with them so that they all feel like they're special and included and they're not being excluded because this one kid, you know, has a condition that needs extra attention. Right. That's a good, that's a good piece of advice. Thank you. Yeah. And that's actually the end of my list of questions. So if listeners want to connect with you, what's the best place to find you? Probably Facebook. And how would they find you on Facebook? Karen Walker most common name in the world, but it's true.