#459 Marrying Diabetes

March 29, 2021Scott Benner

Kristen and Jay got married.

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Kristen 2:07
My name is Kristen and my husband Jay was diagnosed with Type One Diabetes in September of 2017.

Scott Benner 2:17
September of 2017, September 2018, a year and a half ish, right a year and a half ish. How long have you guys been married?

Kristen 2:25
We've only been married about a year but we've been together for 910 years.

Scott Benner 2:31
Okay. Do you mind me asking how old?

Kristen 2:34
I am. 25.

Scott Benner 2:36
Okay, so you guys met each other in kindergarten or something like that?

Unknown Speaker 2:40
Basically.

Unknown Speaker 2:43
That's so nice. Did you date in high school?

Kristen 2:46
Um, well, I was in high school. It was not in high school.

Scott Benner 2:50
I Oh, now I see what you're saying. Jay. Jay has robbed the cradle. Where was he? arcade at the mall when

Kristen 2:58
he was actually my brother's hockey coach. And his younger brother is the same age as my younger brother. And they introduced us.

Scott Benner 3:08
No kidding. Oh, Christine is a bit of a may December thing is J significantly older than Kristen. No,

Kristen 3:15
he's about two and a half years older than me. Gotcha. Okay.

Unknown Speaker 3:19
Yeah.

Scott Benner 3:20
We all have the picture. We see what's happening. Okay.

Unknown Speaker 3:23
Yes.

Scott Benner 3:24
Were you planning on getting married when he was diagnosed? Or was that not in the workshop? Yeah, we

Kristen 3:30
were engaged that December, December 2016. And then he got diagnosed in September.

Scott Benner 3:39
Is it possible that the fear of getting married gave your husband type one diabetes? Yes or no? Maybe

Unknown Speaker 3:46
could have been

Scott Benner 3:48
shocked this system? Yeah. Blood Cells jump up and was like, we have to stop this. And then they just stopped this pancreas instead. That's fantastic. Well, well, anyway. I'm sorry to hear about his diagnosis. But it's it's interesting that you're on the show and not him because you reached out to me. Yeah. And so we're going to kind of find out about your experience, I guess, being the, you know, being the wife and I guess even the, the be truth of a person with type one. So let's go back to when he's diagnosed first. Yeah. I imagine shocking. Were you? Were you a part of the process? Or did he do it on his own?

Kristen 4:28
I was Yeah, I was a part of the process. Jay, how had an insane fear of needles. I mean, he he had the flu shot as a kid and he passed out knocked his front teeth out. So he's, he was absolutely terrified of needles. And I think once he realized what was happening. He did everything in his power not to go to the doctor.

Scott Benner 4:58
No kidding. Do you you think do you think let me ask you a question do you think when he knocked out his two front teeth that's when he decided to play hockey because he just figured why not right like have nothing to lose

Kristen 5:10
right i would say yes but he probably started playing hockey at about three years old and that happened and he was

Scott Benner 5:17
i don't know he was lucky to have his teeth that long man nevermind

Unknown Speaker 5:20
yeah true

Scott Benner 5:21
yeah you think he kind of diagnosed himself and then when he really oh yeah it was going on he just didn't go to the doctor but was his plan do you think

Unknown Speaker 5:31
i don't

Kristen 5:32
know exactly i don't know if either of us really understood what diabetes really was or what type one diabetes was jay like had all of the symptoms he was drinking excessive amounts of water and losing weight but we boiled it down to we moved home from a different city and jay had different work schedule he started having different eating habits we're like this is great you're losing weight and you're drinking lots of water this is wonderful but when it got past a certain point i was starting to get confused and i'm trying to compete with how much water he was drinking i was baffled there was no way i could drink that much water

Scott Benner 6:24
well you know what they say work schedule changes you get thirsty right away so it's january genuinely amusing when you take the diabetes out of it how how many people because that we almost all do it start looking for just any other reason that it might be that really is something because because i guess it feels like if you don't know it's not real but yeah you know the longer you don't know the longer you're hurting yourself it is really like you know it's a lot like when we talk about blood sugar's here and people were like well my doctor said 180 was okay yeah and i didn't know and i always think like did you not look like you could have like the internet exists you could have just said hey what's an average blood sugar person doesn't have diabetes and then when it came back and told you like 85 you could have went huh yeah this isn't good this isn't right it but instead we go with what the doctor said or nobody tells me it's not real it's interesting it's understandable but it's interesting

Unknown Speaker 7:25
for sure

Scott Benner 7:26
so he so he heads off to the doctor with his with his extreme needle phobia from his flu situation by the way my son cole was about 11 i got him a flu shot and just out of the corner of my eye i saw him i think he was gonna punch the nurse reached out and grabbed his hands like we're doing and he's like i don't want this and i was like well you can't hit this woman because you don't want it like that's not how this works yeah did your husband come close to punching anyone at hospital

Kristen 7:52
um no no i know passing out but definitely had to you know go through routine when the needle was coming and need to cold cloth over my face it was all thing but

Scott Benner 8:09
it was just here as a christian at this moment grown man scared of needles covered his face so you're standing there thinking i could probably do better than this right is that what was

Unknown Speaker 8:19
like i know i'm

Scott Benner 8:21
trying a little harder to find the guy who's not afraid of this

Kristen 8:24
well i think we're both pretty bad i'm just as bad like fainter got to get the room with the bed when you go get your blood taken

Unknown Speaker 8:35
yeah it's just bad

Scott Benner 8:37
i hear you so that's interesting though because you're both in that situation so when when the first time you're in the room together and he's holding a pen or a needle or something like that or do you think you were both thinking like well who's gonna do this because it's not going to be me

Kristen 8:50
yeah it was it was pretty awful yeah

Scott Benner 8:54
tell me what happened was it like a three stooges comedy or

Kristen 8:59
it's a it's all kind of a blur i think the nurses had to do it initially he wanted to in the leg for the longest time and now he obviously had to move sites around and so making the back of the arm and i remember he had me he's like okay well you can try just one and i did it in the leg but i think i it was as if i was trying to stab him with

Unknown Speaker 9:23
the insulin

Scott Benner 9:25
like a horror movie were you jabbing yeah

Kristen 9:27
no no i'm purpose ended up being what i did

Scott Benner 9:31
i wouldn't imagine so there was cursing then or do you guys not curse what did i

Kristen 9:35
oh yeah we curse yeah he said that i would never be allowed to do it again but that changed a

Scott Benner 9:45
little does he know that you're gonna spend the most of the rest of your lives together and you're going to you're going to do far worse to him than to each other to be perfectly honest so you guys are close to your wedding date he's been dying he's been diagnosed with type one You're starting to understand that it's a lifelong disease, and you're getting the idea of what diabetes is.

Unknown Speaker 10:05
Yep. You

Scott Benner 10:06
said he lost weight. Did he lose a lot of weight? Like prior to the diagnosis? Like, was it a couple pounds or 20 pounds? or How was it?

Unknown Speaker 10:15
It was a lot of weight.

Kristen 10:17
The doctors have boiled down to Jay being able to wait so long from diagnosis because he burned through a lot of weight. By the time Jay had hit the hospital, he had lost over 200 pounds.

Scott Benner 10:33
Oh my God, that's amazing. So yeah, my gosh, so I'm wrapping my head. I just got I just, I don't know what happened. I just like fried a circuit for how long? How long was the weight loss? In like time months.

Unknown Speaker 10:51
In months,

Unknown Speaker 10:52
it was

Unknown Speaker 10:54
probably three or four years.

Unknown Speaker 10:57
Oh, no kidding.

Unknown Speaker 10:58
It was a long time.

Scott Benner 11:00
Was he willfully trying to lose weight? Or was he just like, Hey, this is things are finally going my way. Like, which which way was it?

Kristen 11:08
It was unsure. I mean, his job switched to like a night shift to a day shift and walking. Like miles and miles and miles per day. So

Scott Benner 11:22
part of him just thought my life's like my lifestyle. My lifestyle is changing. And I'm good. Yeah. And it's working for me.

Kristen 11:28
Yeah. But obviously once it reached like a certain certain weight he had lost there was obviously an issue.

Scott Benner 11:35
Yeah, I was just reading something the other day. That said, I think the number they put in the article was 20 pounds. Like if you lose 20 pounds, and you weren't, you weren't trying to lose 20 pounds, you have to go you have need to go to the doctor. But but so something about him having that weight to lose. Yeah, help them The doctor said Do you have any, like clarification on that? Because that sounds?

Kristen 11:57
Yeah, it was because he had more weight to burn through is

Scott Benner 12:06
so he kind of sustained him for a while while he was going Yes.

Kristen 12:10
That's kind of what they they've said or, or that is Pinker's was slowly slowly shutting down over the years, or else he would have been in the hospital sooner.

Unknown Speaker 12:19
Yeah. Okay.

Kristen 12:21
I don't exactly know when it started or when that that weight loss was actually him trying. Right.

Scott Benner 12:27
That's so yeah, it's hard to know, I guess.

Kristen 12:30
Yeah. And without knowing anything about it, now I look back. And obviously, things would have been done differently for

Scott Benner 12:38
now. You can't hindsight 2020 you can't you can't fault yourself for that. So it's been a year and a half or so. It has the weight stayed off of him. Um, well, when he got to the hospital.

Kristen 12:52
Jay was so so skinny. He needed? Oh, yeah. When he was on he was in the hospital for almost three weeks. And he gained I think 30 pounds in three weeks.

Scott Benner 13:06
Wow. That's crazy. I mean, it's not that crazy, honestly, aren't in game almost Arden gave him was three pounds overnight when she started getting insulin.

Kristen 13:12
Yeah, yeah. And the color came back to his face and the weight came back on you can see his ribs or his bones anymore. And to put into perspective, J is normally probably two to 25. And he's six foot two like he's a he's a grown man.

Scott Benner 13:32
He's a big guy. Right? So yeah. It's it's even more startling when you see somebody who you expect to be sort of big and sturdy to Yeah, get frail. have happened to a friend of mine when I was young, and his father cancer and his dad was like, six, four. And I just always remember him being this massive person. And then, you know, a few weeks before he passed away. It was just like, it hit me one day. I was like, Oh my God, look, it feels like he shrunk. You know, yeah, really something. So you guys get over the shock. And he I'm assuming this he get over his needle phobia? Or how does he end up getting his insulin?

Kristen 14:04
He got over the needle phobia. It did take a while there was a long time where I would be I'd have to tell him that I'm thinking about making supper. So you should start getting the needle ready. Because it would take 45 minutes to an hour for him to even give himself one needle. But I mean, it's not even an issue anymore. He's any is on the Omnipod now, so he doesn't even have to deal with that anymore.

Scott Benner 14:35
That's very nice back then was it sort of like trying to coax a child into swallowing like a pill or something like that? You

Unknown Speaker 14:41
know? Yeah, maybe.

Scott Benner 14:43
Were you ever like there'll be like happy time with Kristen tonight? If you could just go Did you ever just like get yours? So it seriously for second? Was it ever? I don't I don't know if irritating is the right word but from a distance. Did you ever look at him and think oh my mom like I just put the let's Go man, like, like, Did it ever affect you that way? Cuz because here's why I ask when you love someone who has type one, you your concern for them in a way that's not always transferable like you, they don't always want you to tell them. Yeah, you know, I'm concerned for you, I'm worried for you, I really want you to Pre-Bolus or something like that. Like, it's hard. Like, you don't know what to say sometimes what not to say. So sometimes you bottle the stuff up. Did you ever have a feeling where you were like, Oh, my God, this guy is just like not? Like, what's he doing? Or did he get over it pretty quickly?

Kristen 15:33
Uh, no, I tend not to bottle things up. I just say what's on my mind. with J. With getting over that needle phobia, we started this technique. And it was like, if you don't do it on the countdown to five, you're not going to do it. So he won't even start 54321. And in the needle went and it seemed to help. And

Scott Benner 16:00
just giving them a timeline.

Kristen 16:02
Yeah. And then he would do some and I would do some and we just kind of went back and forth, they would help to give them a little bit of a break. And that seems so long ago that I don't think it lasted too too long after he was diagnosed there. There was a bigger issues that came along after he was diagnosed that kind of made that a small deal.

Scott Benner 16:27
What were the bigger issues.

Kristen 16:29
So he started, what they called it at the diabetic clinic was hungry nerve syndrome. So they had never seen it before. And I guess because his blood sugar's dropped so quickly, and they must have been high for so long. his nerves, I guess they say like they're at the, at the top of your skin. So it was just an excruciating pain. And that lasted for, I would say three months, I had to take a leave of absence from work and be at home every day with him. But luckily, that has all subsided. He's still taking medication for it, but he is in a whole different life compared to

Scott Benner 17:27
that. So it did be did just didn't I guess stop at some point. But how long did it take to stop? And what's the pain all over his body?

Kristen 17:35
Yeah, so how he described it as as if he had second degree burns all over his body. He he felt like his his his chest, you couldn't touch him lightly, because it just felt like it felt really bad. I don't really want to use what he exactly said. Because I know there's children and exactly, it hurt a lot. And he couldn't wear particular clothing. He had to buy like a particular sheet and blanket and an t shirt.

Scott Benner 18:15
Listen, I'm all for helpful until it starts costing money. And then you should have told him look stand naked in the center of the room. You're not buying sheets. How long did it take for to pass?

Kristen 18:30
About three months? Until it subsided? And then now? Yeah, it was pretty awful. He I I never want anyone else to experience that. Or watch someone go through that. And what what are the doctors call it hungry nerves and drum. They said that because his blood sugar like when he was diagnosed, his blood sugar was 600 which listen to other people's interviews, it seems like that's relatively normal at diagnosis. is a once he was 14. And within three months, when we went to the doctor, his agency went from a 14 to a seven. So they think in dropping that. That's their best

Scott Benner 19:21
kind of confused is.

Unknown Speaker 19:23
Yeah.

Scott Benner 19:24
You know, it's funny, I was just speaking with someone the other day who was told by their doctor that their child was in experiencing like an incredible hunger that comes sometimes from getting your blood sugar stable and that it should Oh, and I just had never even heard that before. So Oh, yes. Another one for me that.

Unknown Speaker 19:42
Yeah,

Kristen 19:42
that's really it's a lot of the doctors are quite baffled because these issues don't normally come until like 20 years down the road. And there's no way Jay could have had diabetes for 20 years.

Scott Benner 19:56
So so when they hear nerve when they hear nerves in general or problems with nerves they think that that's from long term problems but in his situation it probably it's probably not from that it's probably just something else and it has never like reoccurred or anything like that no would you do with all the sheets and the clothes

Unknown Speaker 20:17
he still wears them

Scott Benner 20:19
i don't like waste crystals

Unknown Speaker 20:22
i mean

Kristen 20:24
the pain is still there but it has subsided to an extent where he can live a normal life

Scott Benner 20:31
that could just be the marriage you don't know feeling that constantly because i have i feel like i'm buzzing a lot of the days i'm glad that it's something that he can work with and it doesn't affect his day to day in the same way do you think he feels do you think he feels it but he doesn't experience it the same way anymore like he's accustomed to it or it just has lessened

Kristen 20:53
yeah that could very much be it he's um he's a tough guy he played hockey for years he played hockey with broken limbs and broken ribs broken wrist and

Unknown Speaker 21:11
sounds so bad to him i guess

Kristen 21:13
right i guess i

Scott Benner 21:15
so you're in you're in canada

Unknown Speaker 21:17
yes i am

Scott Benner 21:18
but you're not canadian are you i am are you really you don't sound good to me i just said that from your voice so where we're in canada are you from

Kristen 21:27
i'm in alberta so like above montana idaho

Scott Benner 21:33
help me for a second why am i why am i confusing your accent with european

Unknown Speaker 21:42
um i don't i don't know i don't

Unknown Speaker 21:45
know i'm an idiot okay

Kristen 21:47
well my like j is from newfoundland which is east coast of canada maybe i'm picking up some of their accents it's

Unknown Speaker 21:55
like i don't know

Scott Benner 21:56
i'm telling you for a second i thought jay got himself like a russian mailer and had it shipped to canada which is a warm up i guess if you're leaving you know russia but for most other people no one's looking to go above montana like imagine imagine everyone who's in montana right now there's somewhere north of you oh horrible so cold

Unknown Speaker 22:18
oh yeah so cool

Scott Benner 22:21
so you said in your note your this is very interesting because do you guys both listen to the show or is it just you

Unknown Speaker 22:27
it's just me

Unknown Speaker 22:29
what made you reach out

Kristen 22:31
um i think after the pain subsided and we were working really hard on the diabetes i was like this isn't right like we're not achieving the numbers of the correct like there's got to be a better way to do this and i just started searching and i i like podcasts and i googled type one diabetes and this was one of the first ones that came up

Scott Benner 23:04
so my quality seo is the reason you found the podcast like if another one would have popped up ahead of it do you think you'd be on a different podcast right now

Kristen 23:11
well i listened to a couple other ones but they just weren't as good

Scott Benner 23:16
i got bless you i it's wrong for me to say it but this is totally the best diabetes podcast

Unknown Speaker 23:23
it's true it's so true

Scott Benner 23:25
thank you your check is in the mouth i appreciate you so i've just brought up my conversion chart so that we can talk about type one in a way that'll be helpful so when you found yourself online googling for a podcast and found the best one on the internet i'm so sorry there there are people who don't hear sarcasm correctly and so sometimes i have to cover myself attempt just joking i'm not joking i think it's the best one so in this moment it wasn't sarcasm it was you'll pick up the sarcasm okay so when when you were like no we have to figure something out where was his average blood sugar sitting

Kristen 24:03
well he would go to bed pretty good about i actually have my conversion rate up to so i can say both for the canadians and americans so he would go to bed monday this was long time ago he go to bed at about a nine like a 160 and he was waking up out of 15 which is about a 270 and i'm like what is happening i have to figure this out and at that point we were just poking we got the libra which was okay it's not that not that great and then once we got that Dexcom we saw that he had the dawn effect and right around 3am his blood sugar was just going through the roof um but he was not achieving between that 70 to 140 range, which is a four to eight, nine. In my language. He was, I don't know, lots of to hundreds, three hundreds. It took a long, long time to get his blood sugar down from those numbers. Okay.

Scott Benner 25:16
And so was this when he was on? injections is still?

Kristen 25:21
Yep, he actually just switched to an omni pod in February. It has not been that long. Okay.

Scott Benner 25:27
Okay. Yeah. So you found the best podcast and you found the best insulin pump?

Kristen 25:31
Exactly. When I found the podcast, he was using the Libra. And I think it took me like two days of whistling to come home and say, okay, you're changing to the Dexcom. And well, as everyone knows, any change with any of the equipment is is a learning curve. And it's a big deal. And he was very resistant, then.

Scott Benner 25:53
Luckily, he had you to force him into it.

Unknown Speaker 25:56
Yeah, exactly.

Scott Benner 25:57
Let me say for a second, I joke constantly about being married, and my wife, and I'm sure if she ever listened to this, she'd probably just put a pillow over my face bombs. Yeah, but most of I'm being serious for a second. Most of the advancements I've made personally in my life, are because of my wife's intolerance of the jackass that I was when she met me. So if I, there are so many things about myself that are better now. Because because my wife said, This isn't good enough. We should be trying harder. Yeah. And I appreciate I don't know if that's just because she doesn't want to do the laundry. Maybe she's like, Look, you need to stay alive. I don't want to fold clothes. Maybe it's that maybe it's that's possible. Maybe she loves me. I can't tell it's hard to tell. But but but anyway, but seriously, sometimes you just need someone who has your best interests at heart who's willing to over to ignore your bullheadedness about something so that's really it's really nice of you because it's not easy. No and and I'm still haven't spoken about my friend Mike in any kind of real context on the show, and maybe I will one day but but Mike passed away a couple of weeks ago. And and I think he he could have used somebody like you to, to push them a little more. And he was very stubborn about his type on his whole his whole life. And I tried as hard as I could and wasn't really in the in the position and I know his wife tried but he needed somebody to to grab him by the maybe by the neck and tell him Look, let's just try this because I love you and let's try you know. Anyway, I'll find the courage to talk about Mike one day.

Unknown Speaker 27:41
Yeah,

Unknown Speaker 27:42
I'm sorry to hear that. Thank

Scott Benner 27:43
you very much. Geez, now I'm just like, he was just who's my best friend that I and I wanted to say that but I was afraid it's gonna make me cry. So I tried to move on to another thought. But now now I'm stuck for a second. I'll tell you what we'll put we'll put an ad here.

Kristen 28:00
Okay, that's okay.

Scott Benner 28:02
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You bring your husband this technology and you're like, Look, I'm listening to this podcast. And we're, you know, there's, there's more here for us like the we will find better tolerances. Was he resistant? Was he thoughtful about it? Did he push you aside?

Kristen 31:00
Yeah. We're both extremely stubborn and bullheaded. So we butt heads a little bit. And it's a hard balance, because I'm trying to boss him around, but be his wife. I don't know, I guess it's kind of my job. But

Scott Benner 31:20
I think your job is just to tell him he's wrong. He's underperforming, and he's not getting to have sex. I think those are really the things you're supposed to do. But what are you doing?

Unknown Speaker 31:31
Um,

Kristen 31:33
yeah, it just, I will come home. So excited every day and say something new that I learned on the Juicebox Podcast that he had to try. And we try it that night, and it would work and everything just started to work. And it started to click. And I i another reason that I use a podcast is because diabetes is so lonely and isolating. And I feel that and it can take over you a few but it but by using that Juicebox Podcast is like a community. And let me get over that. And, and also, let me help Jay in understanding like that I don't want him to ever feel super alone or super isolated, that I'm always I'm always here. And I like I have the knowledge and I understand. I don't understand what it's like to have type one. But I understand a lot about it and

Scott Benner 32:36
a lot of aspects about I feel the same way I there are times when I feel odd that you know that I'm the one who's talking about it when I don't have it. But yeah, but my my perspective of it is is no less, you know, important. I don't think I just I don't know what it's actually like to be the person. Right? What what kind of isolation? Can you describe the isolation? Are you able to put it into words? What happened when he was diagnosed?

Kristen 33:01
Yeah, um, well, we were on our own, we bought a house, like, five, six years ago now, like we were living our own life, we had our careers. And this happened and our whole world kind of came crashing down. Everything that we knew, changed. Jay, worked in a job where he was out in a field in the middle of nowhere. And in minus 40 plus 40. He can't do that anymore. That's too dangerous. There's just no cell service. There's

Unknown Speaker 33:44
it's just,

Scott Benner 33:46
you got you. You were worried about him? Was he worried about it? Or were you worried about it?

Kristen 33:51
I'm both really worried about it. I'm like, in remote areas where no one can reach you. So he hasn't been working since he'd got diagnosed, but we are at a point now where he will be going back but that was definitely hard. And then there was us learning about it, but us learning about it as at a very fast pace. And it's our everyday but everyone around us, all they know is just the very, very, very basic stuff. So it's not our support system was our family. But at the same time, they didn't have a clue what we were talking about.

Scott Benner 34:38
Right. So they're just nodding at you and yeah, looking a little sad for you. And yeah, saying things like, I understand. And that was difficult.

Kristen 34:50
Yeah, it was a lot of like, you're so strong and well, I don't think we have a choice here but but I understand like When something like this happens, you can be strong or you can not be strong. So I don't I'm trying to accept that as a compliment other than getting angry.

Scott Benner 35:10
I think that I understand what you're saying about not wanting to begin to get angry when people say things that don't quite fit what's actually happening, but you just had a break. They don't really know. Yeah, you know, and they are trying to be helpful. It just, it doesn't work out, usually. And I've listened. I've said it before. And I've taken flack over it in the past, because parents like to talk about how brave their kids are all the time. And I just think like, I mean, she I mean, it's brave, but they don't want to that's not like they saw it, they want to do it. Do you don't mean like brave, brave is brave is enlisting in the military when you don't have to write. Brave, right, if you you know, it's it's still brave if you if you get drafted, I guess. But the pinnacle of bravery is saying, There's no reason for me to be in this fight. But I'm going to get into it anyway, for reasons you get diagnosed with Type One Diabetes, it's not like you raise your hand and go, I'll take diabetes to someone else doesn't happen if you did that. That would be brave. What's you know, what's happening to you is strength. Its its resilience, like you are being hit with something hard, and you're and you're resilient. And that's amazingly, it's incredible. And it's not something that happens for everybody. That's why it's so remarkable when you see it, because we know some people are hit with the same thing that happened your husband and it crushes them. Yeah, right. And but you don't know why it crushed them. Maybe they didn't have the support system they needed or the understanding or the tools or the technology or the medication, or the insurance or all the possibilities, and how frequently, there's something happened with diabetes, that is absolutely like buries you in an avalanche. And you feel like you can't get out of it. And you go to your doctor and ask and they're just like, I don't know, like, we won't move this setting and see what happens. And it doesn't do anything. Yeah. Right. So And not only that, you're basically on Mars, because you live in Canada. So you're by yourself. I mean, I mean, when you picture when you said you bought a house I just pictured Santa is like castle, like just snow everywhere with a house right in the middle that you look at and think how do they get electricity? That thing?

Unknown Speaker 37:13
Exactly right, exactly.

Unknown Speaker 37:15
Am I really?

Unknown Speaker 37:17
It's a two storey igloo.

Scott Benner 37:21
Congratulations, a two storey igloo is absolutely going to be the title of this episode. Well done. Well done. That's spectacular. You were really honest, just now about how it felt? And it's Yeah, it's not good now. Do you think? I don't want to? I'm trying to figure out what to do. Do you think that not finding? Forget this podcast? Let's say you found let's say you just found nothing? Do you have a feeling for where you'd be right now?

Kristen 37:57
I'm probably not in a great place. The diabetic center here is probably as helpful as everybody else's few few examples. I mean, we have found a very good nurse practitioner at at the center. But this only happened when Jay got put on the Omnipod. But the information that they give is just so bad. I remember asking, when should we give the insulin before after the meal is like I'm confused. I don't understand what I'm supposed to be doing here. Or what Jay is supposed to be doing here and and they just do look at each other and kind of shrug their shoulders and go whenever you want. Really I'm like what? And now listening.

Scott Benner 38:47
It's the same good. Same thing I do with when I shave my cat today. No, not today. Doesn't work with insulin. It almost doesn't work with my facial hair. But I'm a stay at home dad. So I shave when I want to. It's like really one of the great perks of my job is that I don't have to shave every day. And by the way, I figured that out years ago, in the in the winter, I realized that the moms that I was mostly around with my kids when they were younger were wearing like sweat pants and weren't shaving their legs. And I thought

Unknown Speaker 39:18
I could do it. I

Scott Benner 39:20
thought if they don't have to shave their legs every day. There's no way I have to shave my face every day. Like we're all we're all in this fight together. So now I've become the laziest shaver ever. But that's amazing. So it didn't really matter when to give your insert it could have been before during after they gave you no guidance on that whatsoever.

Kristen 39:37
Apparently, apparently, yeah. And then they would be baffled why his blood sugar was at the 12 or 200.

Scott Benner 39:43
And so you were met with no answers like what would you be told? What would you be told in the beginning when you can you went in you're like look, we see 200 blood sugars all the time. What What should we do? Hmm.

Kristen 39:58
A lot of it was it's better to be high low this is this is better than being low isn't it i'm like okay we we have already been faced with what happens when you have high blood sugars no it's this is not the great the better alternative here i don't

Scott Benner 40:19
that's not an answer either

Kristen 40:21
no it's not and it makes me so angry and i remember there's some nurse practitioners who like my involvement and praise me and i know that drives me crazy because they'll ask his opinion and then they'd be like okay but let's talk to kristen because she has the good questions and it makes him so okay just

Scott Benner 40:42
sit there quietly while mommy figures this out you're gonna have to be careful there by the way you don't want that to turn into a situation where you are mommy you know you're not looking for that especially up in the cold so well do you guys so this had popped into my head earlier i didn't ask but now you brought it up so i'm gonna ask is there a way is it possible is i guess is my question is it possible that you're going to start helping him so much and do such a good job that he could get complacent and allow you to do it and not be as involved in it like is it because that's something parents think about a lot yeah but it sounds like that in the situation it could be similar and i'm not trying to get you divorced and careful how you answer but but it's an interesting conversation right like is it possible that you know i can put it into my own terms right i didn't get i didn't yesterday was a mess at my house at the timing of everything got messed up everything got pushed back and i did not get dinner made and when my wife came home she was she'd had a long day she was like in meetings constantly she had a headache she was tired she was gonna go out and exercise and i know she wanted to walk in the door and eat and there was no food there and she was irritated like to the point where like everyone started making fun of her behind her back like she was really upset and she got over it don't get me wrong but like there was an expectation there she was like i'm out i'm home and someone's gonna feed me and when it didn't happen she was like hey why is this not happening i wonder if your husband's has an expectation of like you'll take care of his blood sugar um

Kristen 42:21
i understand like why you might think that but no j is so on top of it he as like i am very involved in it is like a team effort but g goes on his own places that i'm not there and i'm just he has

Scott Benner 42:43
the same successes away without me from you that he does with you yeah it's just that you understand so you're you're more of like the conduit for the information yeah i listened to the podcast and then you come home and tell him the parts he needs to know

Kristen 42:59
yeah and he tries it or he'll say this is my blood sugar this is what i'm doing this is what i'm eating i'm thinking this what are you thinking

Unknown Speaker 43:07
gotcha

Kristen 43:08
and then we go off of that

Scott Benner 43:10
sounding board just he's yeah and let's let's brag for a second who's right more frequently you

Kristen 43:16
were i'm not going to answer that

Scott Benner 43:20
question everybody she's always right she's never been wrong once and save matt

Unknown Speaker 43:23
oh god

Scott Benner 43:26
listen if either of you knew what you were doing you'd move out of canada i'm just saying it's cold

Kristen 43:30
and it is very cool any sense to live there but it doesn't really doesn't it snowed here to two weeks ago

Unknown Speaker 43:39
in may

Kristen 43:40
yes yeah i like a lot of snow

Scott Benner 43:44
i'm sorry yeah is it is when it starts snowing do you just feel like oh my god i give up

Unknown Speaker 43:52
just cry just

Scott Benner 43:55
the snow snowing i know people on facebook from other places that flowers in their front yards and so nice and i hear all right well listen you have things you have that we don't have don't don't act like you have we don't have it it's fair's fair you have to freeze but you get alright i'm at a loss for what you get you get i'm sure there's something i think people in cold weather live longer

Unknown Speaker 44:22
i don't know

Scott Benner 44:24
not even true i freeze to death i may have learned that on a television show when i was 15 so it's possible that the people on the atm live longer because that's it

Kristen 44:35
i mean it gets like our average temperature in the winter time i don't know fahrenheit it's like minus minus 20 to minus 40 it's pretty normal for the wintertime it's freezing

Scott Benner 44:52
i just the other day i've been telling my wife recently we need to we need to retire somewhere i have very specific ideas i want it to be warm but not hot and not humid and i don't want weird bugs and and every time i say that people like say you're going to san diego i'm like i cannot afford san diego there's not another place and someone told me maybe northern texas but then i guess you get a little weird with like the bad like the you know the wind and the rain that like picks your house up and makes you see you know the wizard of oz so i don't know there's no good place the i think the key to life is to make enough money to live in warm weather places in the winter and cold weather places in the summer i'd like to probably angry yeah but i don't know how i'm gonna do that so i mean i guess i could call on the pod and like you know up my ad rate by 9,000% and that might help me but other than that i don't know what's gonna happen so okay so you switch so he's got dex now Dexcom g six or do you guys can't get you six in canada

Kristen 45:54
we cannot get the g six until maybe october or november

Scott Benner 45:59
do you have the five i have the five yeah still a fantastic meme sensor really really great so you have the g five and you Omnipod yeah did you get the new dash with the on the pod

Kristen 46:12
i don't know if that's out yet here either i tried to look that up and i cannot find this

Scott Benner 46:20
again you guys and being serious for a second having done the blog for so long the podcast canada has always last like they always it takes a long time for stuff to get there okay so but he's but he's pumping and how has that changed things for him it's biggest improvement you've seen i guess

Unknown Speaker 46:40
hmm um

Kristen 46:43
there's so many to lists i don't know if i can list all of them

Scott Benner 46:47
stream of consciousness then

Kristen 46:49
starters has a one c on friday we just went to his endocrinologist was 5.9 his a one c when he got diagnosed was 14 and since then have been between six seven and seven five on injections and then yeah with the pump 5.9 was the last one and just everything so having control of the basil rates is amazing

Unknown Speaker 47:23
it's the whole thing

Kristen 47:25
it's the whole thing the thing about living in alberta the thing is if you don't like the weather just wait a second because it could be 20 degrees which i think is like at one day and then the next day or during that day it could start snowing and drop to zero so the weather extremely affects jays basil rates so being able to have control of them is awesome in the winter time jays basil is 30% higher than the summertime

Scott Benner 48:03
juice

Unknown Speaker 48:03
it's yeah i've crazy

Scott Benner 48:06
a lot by the way that changing the seasons change their basil needs yeah and so are you saying colder needs more insulin

Kristen 48:14
yes and in the wintertime he also can't get out and golf every single second that he can whereas in the summertime is activity

Unknown Speaker 48:24
yeah

Scott Benner 48:25
yeah and when he has less activity he needs more Basal

Unknown Speaker 48:28
yeah for sure

Scott Benner 48:29
okay so you're a golf widow

Kristen 48:33
well he golf i drive the car

Unknown Speaker 48:36
you come along

Kristen 48:38
sometimes sometimes

Scott Benner 48:39
you guys thinking about having kids or no

Kristen 48:42
um yeah but i don't know how long until this podcast will go up it seems like three three to six months is kind of fair to say

Scott Benner 48:52
it's usually the that's usually how it goes we'll we'll there'll be a little baby by them

Kristen 48:57
well i'm hoping that's actually why i had to reschedule the podcast is that we're trying but we need a little help from from science

Scott Benner 49:06
so what you were gonna say you had to reschedule the podcast so you could have sex

Kristen 49:12
i guess that's kind of how it sounded but no

Scott Benner 49:14
we were trying i was like i can't do the podcast today we're making we're making

Unknown Speaker 49:19
sorry

Scott Benner 49:20
no no no please don't be sorry okay so yeah you did have to reschedule a recording this later than we were going to say you had like come you were going having conversations about ivf

Unknown Speaker 49:30
yes that's right

Scott Benner 49:33
i injections and everything are you underway are you still in the planning stages

Kristen 49:36
we are doing the testing at the moment and then in july we go and we decide what option we want to do

Scott Benner 49:47
hmm yeah no kidding yeah do you think you're gonna do you have any ideas

Kristen 49:52
um well there's two options there's a ui or there's ivf and whatever They kind of recommend to us as what we will, will do, I think. Okay.

Scott Benner 50:05
And yeah, and then it's you use the medications and then you go do what you're supposed to do and that makes is that right like that you we're not we're not talking about implanting things yet or are we talking about that?

Kristen 50:17
Yes, we are. IVF is like the implantation of the, the Blastoise light, which is the embryo one, day five, and I don't know too much about it, but I know pretty basic.

Scott Benner 50:29
Sounds like you're gonna know a lot about it. Yep,

Unknown Speaker 50:32
that's, that's true.

Scott Benner 50:34
There's a podcast about about IVF that you should try that I really I've heard a lot of good things about. It's called Matt and Dorries. Excellent Adventure. And excellent is eg GC LL. e. NT.

Kristen 50:47
I have actually listened to that. Oh, you know, that is awesome. How do I know? Yes, I

Scott Benner 50:52
know things about everything. Last night, I said something I said because you think you know everything. I was like, I don't think I know everything. But I mean, I'm right about this. You have tried that? You know, Matt's a television writer. Yeah. And his wife, I think is a journalist. Yeah, she

Kristen 51:08
works for BuzzFeed, I think which is like those elbows. videos you see on Facebook Like, DIY is I think

Scott Benner 51:16
BuzzFeed ruined blogging. Because nobody wants to read they're like, I just want to click through see some pictures video DiCaprio. watch a video at the end. Find out why that worms crawling out of that girl's cheek and then I'm back. But anyway, I've heard really good things about that podcast. So you've already listened to it all the way through. Okay.

Unknown Speaker 51:35
Yeah. It's awesome. Me?

Scott Benner 51:36
Yes. For the rest of you. I don't mind if you listen to other podcasts that aren't diabetes, as long as they don't get in front of mine in your listening list. And you definitely shouldn't listen to other diabetes podcast because I mean,

Unknown Speaker 51:47
it's true. What's the nice?

Scott Benner 51:50
Kristen just told you this is the best one. And believe me, she's from Canada. They don't lie about anything.

Unknown Speaker 51:55
No, we don't.

Scott Benner 51:57
And when she lie about not lying, probably not. Okay, well, I want to wish you luck. I hope it goes well. And that, you know, are you hoping for one or do you like when you start talking about IVF? Do you start thinking there could be more than one or how does that usually work? I don't know nothing about it. Besides,

Kristen 52:16
yeah. Well, their their goal is to only have one because there's a lot of risks with having multiples. But I mean, I'm still hoping for twins. I would love to have Yeah, one and done.

Scott Benner 52:29
Plus you're probably so lonely up there in the tundra. Then you're right yeah one to go gather like moose pelts. Yeah. And the other one could get firewood. You probably live in a sprawling metropolis. I I've just or maybe you don't. How is Alberta? Is it are you in the woods? Are you like, is it I? It's so much fun that I don't know anything.

Kristen 52:59
There's there's about in the city I live there's like 100 over 100,000 people are not a huge city, but we are right between place called Calgary and Edmonton. And they're, they're quite huge. Yeah. Yeah. Okay. The Oilers and the flames.

Unknown Speaker 53:16
That's how I knew it. Yeah.

Unknown Speaker 53:21
Yeah, and then. Yeah, no, all right.

Scott Benner 53:24
So Fine. You don't live in a tree or something like that? No, no, no. How would a tree even grow in that call, but I know nothing about how trees work. We

Kristen 53:32
have like evergreen trees. Lots of Christmas trees.

Scott Benner 53:35
We're lucky I understand this diabetes thing because if this podcast was about almost anything else, it would just be a lot of quiet. you going? I don't know how that works. That sounds horrible to me. This is the one thing I understand. Okay, so, uh, I mean, I like it. I like what you guys have got going. It's it seemed it seems healthy. It's supportive. It's obviously moving things along for him. Do you imagine there's a time where you he hits a rhythm and you guys just don't have to talk about this anymore?

Kristen 54:07
Yeah, that's that's what I'm hoping I'm hoping that it you don't have to talk about it as much or

Scott Benner 54:17
I don't want you to start having Munchausen thoughts like let's keep this diet like this blood sugar high so he needs me.

Unknown Speaker 54:23
No,

Scott Benner 54:23
I don't you don't sound like no, but but I'm saying the the other side of it is really like the goals got to be lessor diabetes conversations, you know, small, smaller part of your life. I just do what I do. I get to live my life. I don't have to think about diabetes as much. Absolutely. And that frees up time for you to to to raise little, your little Norse gods that you're gonna have. Right? Yeah. Because seriously, like, I listen, I can speak from from real experience. So there's been times when my whole day was about diabetes. Yeah, and I started figuring it out and it became less and less and less and now you know we talk about being bold with insulin and and then i tell people all the time like you'll find a rhythm and when you find your rhythm you're not as involved as much and i know people don't believe me that you know at first that you know a 70 to 120 blood sugar range doesn't make your Dexcom alarm constantly if you're using your insulin the right way but it's true yeah you know there's days that go by that i don't hear a Dexcom alarm ever and and that's got to be your goal and then i think after that kristen because you're right this will go up months and months after we recorded we're recording may i think that arden is going to continue on with the loop i've been using it and she's had it on for maybe four pods now so 12 days or so and i don't see why i would stop at this point you know and i'm learning a ton of stuff about the things that i talk about and how to how to make bigger you know better i guess decisions one of them i'll just i'll tell you what i'll share with you at the end i don't even have it fully formulated yet so you'll hear me months before you'll hear this with kristen i'll have sat down with i think i'm going to do another podcast with katy de simone that who's very involved in the looping world jenny smith and i are probably going to do a series about talking about how to loop so excuse me i can tell you that because you don't have a podcast about diabetes you won't rush to do it before me like some other people do when they hear me talking about social media but that's okay it doesn't matter you can do better i'm just gonna do like kristen said it's fine but seriously so one of the things we talk about all the time is like you know Temp Basal like you know i say you should up your basal rates at times when you need more you know when it's my carver like car beer like times right but when i watched this loop do things it's it's not so i you know gave arden you know her lunch Bolus when you and i were talking and almost immediately the loop increased arden's basil by like three times it was it went up to almost like six an hour yeah and then it just stayed there for like i don't know 10 minutes and then it went back down again and then it went back up and it's as she's eating i watch it push harder like you know i always give that example like put your hands together and press you know at the same rate i'm seeing it do exactly what i was trying to envision it's feeling more resistance from food and so it's pushing harder with the basil it's such a simple like idea and obviously we have it you know everyone listening has it figured out now about about the idea because we talked about it so much but to see it happen with that amount of insulin flip me out and i realized here's what i realized because of the artificial pump settings like you set your basil rate to whatever like what's your husband's basil right do you know is it

Kristen 58:11
yeah it's 1.2 1.2 an

Scott Benner 58:13
hour yeah and so when i tell you to double it to 2.4 that sounds like all the insulin in the world right it sounds like so much insulin and we only think of putting it up to 2.4 because that's how far the pump goes because the pump lets you double it to a you know 200% but with the loop there's a setting where you can say what's your maximum amount of basil you'll normally use and so when i first set it up i was like well for eight you know for basil rates like 1.4 or 1.8 i don't want it to go to all the way to like too high so i just sort of like doubled it i was like well you can go to two eight and then i realized they couldn't do what it wanted to do so yeah i pushed that thing way up to like seven i don't think it's ever used seven but there are times when it's like okay more pushing and then and then if it pushes too far it'll go down to zero it's just it's so great it's it's like watching my brain work on a screen

Kristen 59:12
wow i'm gonna have to look at look into it so

Scott Benner 59:14
insane it just it's and don't get me wrong there's things about it it is so counter intuitive in some ideas like there were times when i thought okay i have to change a setting obviously when i was getting it right in the first week or so yeah and my every instinct of what to change i was always wrong that was backwards if i thought turn that up it was turn it down if i thought turn that down it was turn it up until i really started to understand what the settings have you know control over what they're trying to accomplish and how it affects other settings and as soon as i got it all set my head i was like whoo this is pretty cool it doesn't it doesn't change what i think if you don't have

Unknown Speaker 59:53
no

Scott Benner 59:55
we can all keep doing what we're doing and i am definitely going to be able to speak Even more clearly about being bold because of what? looping but I will also say that in the future, I think that everyone who has a CGM at a pump who has access to something like this, it's going to it's at least very worth your, your time to try.

Unknown Speaker 1:00:18
Yeah, for sure.

Scott Benner 1:00:18
I'm gonna be an advocate of it going forward.

Unknown Speaker 1:00:22
Yeah, absolutely, I'd love to look at it. It's pretty cool. I'm

Scott Benner 1:00:25
looking at it right now across the room. It really did it, it, it totally cranked up her basil, then it dropped it back to nothing. And now it's got it at the normal level and her blood sugars. It's not as good as I would want it to be. But we're also on a new site right now. And I don't know how well the site works. We kind of moved around in her leg a little bit. But she's an hour, she's almost an hour passed when she gave herself the insulin, and her blood sugar is 121. And she's done eating. It's amazing thinks she's going to go down over the next 30 minutes. So you can kind of see the what it's predicting. But yeah, even that's neat. Like I'll like, I'll just at the end here, it's even cool because it shows you what it's predicting. And it's predicting, like three hours from now her blood sugar is going to be 40. Wow. But it doesn't mean her blood sugar is going to be 43 it means it's going to make adjustments between now and then to keep that from ever happening.

Kristen 1:01:22
Yeah, I've had to explain that. That very concept to so many people like, exercise makes Jay's blood sugar go down. But it doesn't mean he's gonna go low. Right? Yeah, just that so it doesn't.

Scott Benner 1:01:36
We make other decisions. Like, yes. It's like a time travel movie. It's like, it's like, somebody comes back from the future and tells you you're going to, you know, grow a unicorn horn if you go to Disneyland. Yeah. And so you just go, Well, I don't want a unicorn, so I won't go to Disneyland. And then it doesn't happen, right? Yeah. So this thing tells you Yes. Hey, you're gonna die three hours from now. But don't worry, we'll make adjustments. It'll stop that from ever being your reality. Really, really cool. So I'm sorry, like took up your time at the end of

Kristen 1:02:05
that? No, that's okay. I want to touch base quickly on what you said about increasing the basil and how you never thought about going over, like doubling it because your pump settings wouldn't let you and had to bump them out. With Jay's basil. It was very scary at the beginning. But during the nighttime when he has that domino effect and his blood sugar rises. I have or we have to triple his basil rate overnight.

Scott Benner 1:02:33
And how cool is it that you figure that out and had the man I say the loose testicles to do that?

Kristen 1:02:40
Yeah, it was a big deal. It was very scary. To do that. How

Scott Benner 1:02:45
does that sound? Hey, Jay, I'm gonna do something over here. If you don't wake up, I love you.

But seriously, how did you make the leap to do something it seemed that out of line with sanity.

Kristen 1:03:00
Um, well, it would happen night after night and I got sick of waking up, or one of us waking up one of us setting alarms at 2am 3am 4am just to look at the Dexcom to see what was happening and adjusting with with a Bolus when he was on injections. And when we got the pump I'm like, I'm just going to set up a bit like a basil program that starts running a higher basil one hour before it spikes every single night or over and over and over again. So I just started I did one 1.8 2.43 and it worked. Yeah,

Scott Benner 1:03:43
is it fair to say that you trusted that what you knew was going to happen was going to happen?

Kristen 1:03:48
Absolutely. And but then you have to think like the other things that affect Jays blood sugar that you probably haven't experienced that is like drinking alcohol. Then what do you have to do with that increased Basal rate and most times I just switch it back to the other one depending on if he had a fatty carb snack before bed.

Scott Benner 1:04:10
Yeah. And if he gets a little woozy you have to turn it down.

Kristen 1:04:14
It depends if he has like a couple drinks with supper. There isn't actually too much that I have to do. I say I mean we or him or whoever is doing it.

Scott Benner 1:04:27
I've made you feel self conscious about it now I'm sorry. You I didn't mean to I apologize.

Kristen 1:04:33
No, it's okay. Um, and but if he does have a night where he is drinking all night long with friends or we're out on holidays and we're drinking lots what they did tell us at the at the clinic compared to what we actually do at the clinic. They said when you drink alcohol don't shoot a single drop of insulin for any carb you eat. for supper any anytime you're drinking and before bed. Have a fatty carb snack like go get french fries with donald's pizza or anything like that if we decided to do that jay's blood sugar would be well in the three hundreds that's not going to happen i don't want when he drinks we just say screw diabetes today you're gonna drink

Scott Benner 1:05:22
what was the point of that did they just think because become unconscious you should say hi to be safe or they thought that yes that was what they were saying

Kristen 1:05:29
yeah i'm assuming i yeah any anything i don't i don't understand why they said that but what we actually do is when he is drinking and it's obviously different for every person but when he is drinking we shoot insulin for supper for all the snacks for all the meals so he's keeping in range and right before bedtime we go get like it's it's an excessive amount of carbs that he has to eat before bed like 120 140 carbs but fatty carbs and he has that at bedtime and i take off that increased basil for the dawn effect and he is steady the entire night and there's no lows and there's no highs and i mean it doesn't go over one 130

Scott Benner 1:06:20
yeah that's amazing and you figured that out on your own and that's really the goal is to tell people that there's a lot you're gonna have to figure out on your own so yeah you know

Kristen 1:06:30
and until you can be at a point where you don't talk about diabetes all the time you have to put in the work and you have to

Scott Benner 1:06:36
yes it's such an important idea yeah it's it's it's more work down for less work later exactly and your goal and your hope is it's more work now for almost no work later yeah and try to make this on most days kind of like transparent in a way that you just don't notice it alright christine you were fantastic it's such a good sense of humor i said so many horrible things about your life i said that i feel like you live in a new igloo i said something about moose testicles at some point i gave you i gave you a podcast recommendation for podcasts already knew about and i really thought i had they there i was like well i'm gonna say something really like great for her and she's like i've heard that i inferred that you were a russian mail order bride at one point and flowers what i'm saying have a good time

Unknown Speaker 1:07:33
i did thank you for having me

Scott Benner 1:07:35
of course we are you less nervous now than you were when we started yes didn't start well by the way everyone kristen had like technical problems that i think she was like starting to panic in the beginning and i was starting to hear a little panic in her voice but she really mellowed out and did a nice job and she had her conversion chart weather and everything yeah very nice kudos thank you so much out let me say goodbye and then hold on and i will say goodbye to you like a real person when we're not recording your voice a huge thank you to one of today's sponsors je vogue glucagon find out more about chivo hypo pan at g folk glucagon.com forward slash juice box you spell that GVOKE gl use c ag o n.com forward slash juice box thanks also to the Contour Next One blood glucose meter find out more at Contour Next one.com forward slash juice box and please allow me to apologize to kristin this episode along with a handful of others got lost in the system this was recorded a long time ago kristin i am so sorry it took this long to come out and for those of you listening who it may have felt a little disjointed timeline wise i apologize there too thank you everyone for listening for subscribing for telling someone else about the show i'll be back very soon with much more of the Juicebox Podcast