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Episode 59 - Only 6 Months In!
254 Plays2 months ago
Katie, mom of a T1D diagnosed just 6 months ago, shares her journey so far. The first year is full of so many ups and downs but Katie is proof that you can make progress in both management and mental health around diabetes quickly!
If you are interested in joining our next round of Better Together, join our waitlist: https://forms.gle/XBrjXZyntQd3phGb8
Raquel is in a contracted agreement with Tandem Diabetes
Instagram: https://www.instagram.com/typeonetogether/
Tiktok: https://www.tiktok.com/@typeonetogether
Amazon Storefront: https://www.amazon.com/shop/typeonetogether
Website: www.typeonetogether.com
T1D Diagnosis: Made Simple (The Course): https://typeonetogether.thinkific.com/courses/t1ddiagnosismadesimple
T1D Babysitter List: https://stan.store/typeonetogether/p/t1d-babysitter-resource
Team Together: https://www.typeonetogether.com/teamtogether
Super Parents Community: https://honeyhealth.app.link/28gQmJjyDsG
Facebook Group: https://www.facebook.com/groups/typeonetog
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Transcript
Katie's Son's Diagnosis Journey
00:00:23
amandacberg
All right. Today, you guys, we have a parent on with us. Her name is Katie and she has a son who lives with type one. They're fairly newly diagnosed. It's only been about six months. So hi, Katie. Welcome to the show.
00:00:39
Katie
Hi, thank you. I'm glad to be here with you guys.
00:00:42
amandacberg
We're so happy you're here. Um, so we're just going to like dive into all the things because obviously they're a fairly newly diagnosed, um, family and Katie and her family also chose to participate in round.
00:00:58
amandacberg
Gosh, was that round one or two if better together?
00:01:00
Raquel
I think it was one?
00:01:01
amandacberg
One. It was the first.
00:01:02
Raquel
I think it was one.
00:01:04
Katie
Uh, I did not know it was one and you guys just really had it nailed down.
00:01:08
amandacberg
Oh, perfect.
00:01:08
Katie
So I thought this was, you could have told me it was like round 10.
00:01:12
Raquel
Maybe it was two.
00:01:14
Katie
I'm like, wow.
00:01:14
amandacberg
No, I'm pretty sure it was round one.
00:01:14
Katie
Yeah.
00:01:16
amandacberg
Yeah.
00:01:16
Raquel
Yeah.
00:01:16
Katie
Okay.
00:01:17
amandacberg
um So thanks for being a guinea pig. Glad you didn't know you were one.
00:01:21
Raquel
but
00:01:23
amandacberg
um And now you're just you're living your life.
00:01:23
Raquel
when
00:01:26
amandacberg
So let's kind of get into it.
00:01:28
Katie
Yeah.
00:01:29
amandacberg
Do you want to introduce yourself a little bit and then maybe um dive into your son's diagnosis story?
Adjusting to New Family Dynamics
00:01:38
Katie
Sure. Yeah. I mean, so we're just, you know, a typical family here in Oregon. Um, myself, my husband and our two kids, um, both school age kids and he, I can talk a little bit about his diagnosis.
00:01:55
amandacberg
Yeah.
00:01:55
Katie
Um, he was playing, so we have a little bit of a unique situation in which, um, my husband works from home and then um like you know In another lifetime, I was a ah public school teacher, but now I'm home with my kids, um so we spend a lot of time with them and are pretty in tune kind of to what to them and what they're doing and that kind of thing. and um Back in January, he, my son,
00:02:29
Katie
um He was playing two sports simultaneously and some days would have practice on the same day. um And my husband was taken into practice.
Diagnosis Confirmation and Initial Challenges
00:02:38
Katie
And for the, for like a few weeks, he was saying, um hey he's going to the bathroom a lot in practice.
00:02:47
Katie
And this is probably like, I bet for a lot of parents, like, yeah, so I'm going to the bathroom a lot or her, whoever, their own kid.
00:02:52
amandacberg
Mm
00:02:54
Katie
um but it did not pop into my mind at all. Like he's got to go before and in the middle and then he goes again when we get to the next practice and that kind of thing. And it was just like, huh, well, that's weird.
00:03:07
Katie
Um, and then he, my son commented to me a couple of times, can you pack me another water bottle at lunch? I'm, I'm finishing my water bottle or can I have a bigger one?
00:03:15
amandacberg
-hmm.
00:03:18
Katie
And, um, and again, didn't think anything of it, just, Oh, you're just really thirsty.
00:03:25
Katie
You know, she was, but, um, so this continued on for a little while, not a long time, um, because we're pretty in tune and we just thought, okay, we need to get this checked out.
00:03:25
amandacberg
Yeah.
00:03:37
Katie
So we made an appointment, um, thinking probably like a lot of parents, um, we might be talking about cause you have a UTI, something like that. Um, and so we get in, it was basically like,
00:03:52
Katie
we need to get him checked out because I know it's not this. I mean, like, well, I know, like my brain is like, well, I know it's not going to be type one diabetes.
Hospital Admission Hurdles
00:04:00
Katie
So we need to figure out what it is. Um, because I did, you know, just anecdotally know that those were some of the signs.
00:04:07
Katie
Um, and he has always been kind of a tall, skinny kid. And so that, that sign didn't really ring a bell for us, but, um, he, we went in just to the normal clinic.
00:04:13
amandacberg
I will.
00:04:18
Katie
Um, and, um, He did the UA and then we go and meet with the PCP and we're talking through um some of the things that he's facing. And um and she even, you know, cause he really didn't have kind of the typical sign. So ah she did not go in that direction at all.
00:04:44
Katie
um And then as we're talking in the room, she has her computer up in front of her and the chart pops up. And she looks at me, like she just kind of looks all, she goes, um she goes, I'm seeing glucose in his urine.
00:05:00
amandacberg
Yeah.
00:05:00
Katie
um And it was like, I'll never, you know, I'll never forget that moment. Probably every parent will never forget the moment that it happens and it's like, her face, I'll never forget her face.
00:05:13
Katie
And I just remember we're sitting there thinking like, how can I make these words go back in her mouth? And I think like, how can I just like, this is like a moment, how can I stop time? um
00:05:24
amandacberg
So you immediately knew what that meant.
00:05:26
Katie
i I knew what it meant because we do have a few people in our community who um have type one, and but it was just, it was still such a shock because like I said, I know it's not gonna be this.
00:05:32
amandacberg
Okay.
00:05:37
amandacberg
Yeah.
00:05:39
Katie
Like I know it i know he doesn't have type one diabetes. um But sure enough, you know, so that was such a kind of bizarre moment while it was happening. It was very much like a floating above kind of seeing it occurring.
00:05:59
Katie
But I, and you can't like, so my kid is 11, he's almost 12. And so it was definitely one of those things where I was like, okay,
00:06:12
Katie
I need to have a reaction that is not going to panic him that is going to show that we have this under of control. We got this. We're going to get it figured out.
00:06:23
Katie
There's no reason to panic kind of thing. Um, but that was so like there was such a dissonance between how I had to act and how I was feeling, you know?
00:06:33
Katie
So that was really bizarre, um, and scary. And, um, so that was what happened in the clinic. Um, And so they, he was over, he was around like 400 or something like that. So, you know, obviously high. Uh, but they go, she goes, huh, I need to like, we talked about it a little bit. And she was just like, I need to call the hospital. We need to get these things in motion.
00:06:33
amandacberg
Yeah.
Support and Immediate Care Needs
00:07:06
Katie
Um, but we had a really.
00:07:11
Katie
I don't know, felt like a unique situation. And the fact that she calls the hospital, and she's like, there's no beds at the hospital.
00:07:17
Raquel
That happened to me. I had to wait another day.
00:07:18
Katie
Did it? Okay.
00:07:19
Raquel
Yeah.
00:07:20
Katie
Okay. So, and I'm thinking, okay. ah She goes, basically what happens is we had to go home and just sit and wait and wait for the wait for them to call us and say there was a bed available.
00:07:36
Katie
um And so there was what felt like forever, but was like four or five hours basically sitting at home, um waiting for them to call us, having my kid tell me, I'm hungry.
00:07:51
Katie
Like, why can I have to eat? And not knowing, you know, literally not knowing what to do.
00:07:54
amandacberg
Mm.
00:07:58
Katie
And actually, as I'm telling you this, I'm remembering. So in the clinic, they said, well, you can't get to the hospital quite yet, but there's going to be all this, these blood panels that you need. So why don't you go get that done um in the meantime?
00:08:09
Katie
um so we do that and then the the doctor comes down to check on us and I Said my kids telling me he's really hungry. Like I don't know what to do Um, and they have at the lab right there, they have this kind of cart of various things for people, you know, has water and et cetera.
00:08:27
amandacberg
Mm hmm.
00:08:27
Katie
Okay. It had juice boxes. It had, um, just like Ritz crackers. It had something else.
00:08:34
amandacberg
ah here
00:08:35
Katie
It was just like, could we have just an absolute carb fest kind of like, so it was like.
00:08:36
amandacberg
Yep.
00:08:41
Katie
and she goes And I go, I can't give him this juice box, I know that. I don't i don't know much, but I know that. um And she goes, that's okay, I'll run upstairs and I'll find something. And she comes down with um just these couple things that we did not end up giving him, but it just, what it did in that moment is highlight so much because looking back on it now, she brought down things that were also really high in carbs,
00:09:09
amandacberg
Oh my gosh.
00:09:10
Katie
without really understanding what it was like. Yeah, and so um so what what we've learned over these months is just and what why it's so valuable for part of what you guys do, what you do is there is so much misinformation and so much confusion even in the medical community um ah but about what it is, about best practices, all that kind of stuff.
00:09:26
amandacberg
Yep.
00:09:36
Katie
So anyway, he we go home. I was like, okay, I can, I literally fed him just meat. It's like, I know that you can eat that. um And so I'm sitting at home, you know, we're just basically staring at our kid, like, what do we do right now? um And there was
00:10:04
amandacberg
Thank you.
00:10:04
Katie
You know, and I'm a person of faith. And I feel as I look back on this, there's a lot of moments where a lot of things fell into place, like kind of just perfectly. And um one of my friends who we were great friends growing up and then just kind of, you know, went our own ways, just like happens to a lot of people and then reconnected um as adults. And um her daughter has type one, um but was diagnosed about four years ago, something like that.
00:10:36
Katie
And obviously she was my first call, like, what am I doing? what do i and and i And she goes, well, aren't you on your way to the hospital? That's what they sent us there. We'll know because um there's no beds.
00:10:51
Katie
So she was like, I can't believe they sent you home.
00:10:54
amandacberg
Mm-mm.
00:10:54
Katie
And um what like she was basically like this angel who's like, I'm coming over to your house right now. Um, she came over, she brought her supplies.
00:11:08
Katie
She's like, I need to prick his finger. I need to know what's happening. So she literally did that for us and then just talked us through a few things. Um, meanwhile, um, his blunter then it was like two 55, something like that.
00:11:17
Raquel
What was his blood sugar, if you don't mind sharing? Okay.
00:11:23
Katie
So not crazy, you know, but, um, Meanwhile in Oregon at this time.
00:11:25
amandacberg
Yeah.
00:11:29
Katie
So in January, if there's any Oregonians listening, you know, we, tend to have a lot of rain, but don't very often get snow. um Sure enough, right at this time, this huge snowstorm was about to roll in.
00:11:39
amandacberg
Oh
00:11:43
Raquel
Great.
00:11:44
Katie
um Like snow ice storm.
00:11:48
amandacberg
my gosh.
00:11:48
Katie
And so we're literally like watching the forecast, like, are we going to be able to get to the hospital? um So she brought this bag of stuff that was like insulin pens, needles, her one of her extra glucometers and just was like, you if you can't get out, you'll be able to get through the weekend or whatever you can call me.
First Hospital Visit: Emotional and Medical Struggles
00:12:11
Katie
um so So she comes over, checks on him. ah We eventually are able to get to the hospital. Do you wanna get into that now or do you wanna talk about it a little bit later? or
00:12:26
Raquel
Yeah, um I mean, whatever you really want to share is super interesting, like being that you're still so close to that happening. really It really was only like six months ago, you said, so.
00:12:36
Katie
Yeah, yeah.
00:12:37
Raquel
um
00:12:37
amandacberg
And it creates the building blocks, I think, for the need that you and your husband ended up feeling for. Like, where why did you need to seek out Type 1 together?
00:12:47
Katie
Yeah.
00:12:48
amandacberg
Why did you choose to invest in the Better Together program?
00:12:49
Raquel
Yeah.
00:12:53
amandacberg
So yeah, let's go through the hospital and everything so that we have kind of a general idea of what the standard diagnosis process is like and the major gaps that are missing, because you're not alone, I tell you that.
00:12:55
Raquel
yeah
00:12:59
Katie
yeah
00:13:05
Katie
Yes, absolutely.
00:13:06
Raquel
Yeah.
00:13:07
Katie
so So we're at home waiting to be called by the doctor. I call at least three or four times, like, surely there's a bed now, or you know like someone's going to tell me what to do.
00:13:18
Katie
like i'm I'm extremely concerned, and this is a legit concern. What am I doing here? um And ah finally, the the doctor calls me and He was exactly, he's like and he's still my kid's doctor.
00:13:37
Katie
He was exactly the doctor who I needed to call me in that moment.
00:13:39
amandacberg
No.
00:13:40
Katie
He um he goes, I'm getting on there like basically a hysterical mom um legitimately. And he's he goes, hey, this is gonna be fine.
00:13:53
Katie
He goes, it it actually, this is gonna be great. And I was like,
00:13:58
amandacberg
You needed that?
00:14:00
Katie
I mean it like it was like imagine him just like we're on the phone but just like gently taking me by the face and being like hey this is gonna be fine like this is all gonna be okay like and I was like oh okay like oh okay this is gonna be fine and
00:14:09
amandacberg
Okay, okay, okay, okay.
00:14:18
Katie
i needed I needed to hear that. um i didn't It was not, and this is gonna be fine in the way of like a dismissal.
00:14:26
Katie
it was This is gonna be fine. It and like it felt like he was like excited to meet my kid. This is such a weird way to say it, but you know he's excited to meet him and just, we're gonna take care of him like in the next few days and we're gonna get this kind of all squared away.
00:14:27
amandacberg
Right.
00:14:32
amandacberg
Oh.
00:14:32
Raquel
Aww.
00:14:41
amandacberg
Yeah.
00:14:41
Katie
That's how I felt. So that was, that's how he needed to call me. Shout out to Dr. Cohen and his team.
00:14:47
amandacberg
right
00:14:48
Katie
Still see you guys. He just loves seeing you. but um so So he finally, so like, again, it's been like five hours. We finally get up there um and they check us in.
00:15:01
Katie
You can imagine my kid is um He's a pretty kind of like stoic guy, but I can see internally that the wheels are really turning. What is going on? You know, he's never been to the move to the hospital, but not to be admitted and that kind of thing, which is a ah much different situation.
00:15:23
Katie
um he We get him in. um He's still hungry. So keep this in mind.
00:15:30
amandacberg
Mmhmm.
00:15:31
Katie
He's hungry. He really hasn't had a meal in
00:15:32
amandacberg
Mmhmm.
00:15:34
Katie
hours since I took him to the clinic and on the way to the clinic, he ate like peanut butter Ritz crackers. So no wonder he was like 450 or whatever. Um, so he really has not had food. He's hungry. He's tired. He's alarmed. He, et cetera, which all makes sense that he would be, um, they get him in the bed and within five minutes. Um, and I keep telling him, Hey, can we please get him something to eat?
00:16:02
Katie
We need to address this first and then we can um figure out the rest of it. Oh yeah, we'll bring him something to eat. Yeah, we'll bring him something to eat. Okay, right. ah Within five minutes, the nurse comes in who wants to give him an IV.
00:16:17
amandacberg
Mm hmm.
00:16:17
Katie
And without going into too much detail, the blood draw was not a good situation just for a number of things.
00:16:21
amandacberg
Mm hmm.
00:16:24
Katie
I think he probably felt awful physically, you know, and then they needed so much. It was like, eight or nine things of blood. Anyway, so she comes in, says, I'm going to give an IV. And and he was very nervous about that. um And so I just said, you need to come back later. We're not going to do this now. um And she looks right. I mean, she goes, I'm it's only me here tonight giving IV. So it's going to be a long time." And I was like, well, good.
00:16:55
Katie
I hope it is a long time.
00:16:55
amandacberg
Yep.
00:16:56
Katie
I don't have to see you again. I was just joking. but um so But that was also like a really mini lesson about like how much you have to advocate for your kid um because he was not in a mental place um to get one.
00:17:13
Katie
I understand why they wanted to give him one, but I don't know. I just had this kind of intuition that we don't need to do it now.
00:17:20
Raquel
Thank
00:17:21
Katie
And I don't even know if he needs one. And so they didn't give
Returning Home: Adapting Daily Life
00:17:25
Katie
it to him.
00:17:25
Raquel
you.
00:17:26
Katie
Then they finally come back hours later and was like, Oh yeah, the doctor said you don't have to have one.
00:17:31
amandacberg
Oh my God.
00:17:32
Katie
So yeah.
00:17:32
Raquel
What?
00:17:34
Katie
Um, which he, he didn't, he didn't need it.
00:17:35
amandacberg
Oh my God.
00:17:38
Katie
He ultimately didn't need it. Everything.
00:17:39
amandacberg
Cause he wasn't, he wasn't like NDK.
00:17:39
Katie
Yeah.
00:17:42
amandacberg
He wasn't ill.
00:17:42
Katie
No. So we write.
00:17:43
amandacberg
He didn't need fluids. He didn't need an insulin drip, like all these things, right?
00:17:47
Katie
No, we, yes.
00:17:47
Raquel
So that just shows they don't know that 250 isn't that serious or whatever he is.
00:17:51
Raquel
Like that would be like me just randomly going in on a Tuesday because I'm 250.
00:17:54
Katie
Get an IV.
00:17:54
Raquel
Like no ketones.
00:17:56
Katie
Right. And he, so yeah, we have a little bit of a unique story. Like we, we caught it early. Um, you know, just because we were just kind of so in tune to what was going on with him.
00:18:08
Katie
Um, and he was not in DKA. Um, he was, you know, sick obviously, but like not, I don't know. So yeah.
00:18:18
Katie
So he did not need one. And, um, you know, in the grand scheme of things, I'm aware that like, uh, Ivy is not that big of a deal, but like two and 11 year old kid in this scary situation.
00:18:29
amandacberg
Oh, it's a huge deal.
00:18:29
Katie
It's a big L. Yes.
00:18:30
amandacberg
Huge deal, especially when you are already facing needles for fingerprints and injections.
00:18:35
Katie
Right.
00:18:35
amandacberg
you do not if If you can avoid an IV, avoid the IV.
00:18:40
Katie
Right.
00:18:40
amandacberg
If you're so ill that you need the IV, get the IV in immediately.
00:18:41
Katie
This.
00:18:45
Katie
Yeah, totally.
00:18:45
amandacberg
like
00:18:47
Katie
And I know that certain things are protocol, um but also I don't care.
00:18:52
amandacberg
Yeah, yeah.
00:18:53
Katie
So, yeah, totally, totally.
00:18:53
Raquel
Yeah.
00:18:54
amandacberg
We have similar mama bear energy, you and I.
00:18:58
Katie
um Okay, so fast forward a little bit, finally get something to eat. um The doctor comes see and this is pretty late at night. that were So he finally gets goes to bed about midnight, I would say.
00:19:15
Katie
um And ah then they do the middle of the night check. And I honestly don't remember if he was low or high in the middle of the night, but um he must he must have been low because I remember them, you know, 2 a.m.
00:19:35
Katie
trying to shove eight ounces of milk down in him and um other stuff.
00:19:38
amandacberg
oh
00:19:40
Katie
But um and that was pretty traumatizing. Um, and then coming back because again, their procedure, their protocol, check him in 15 minutes or whatever.
00:19:51
Katie
And it's like, well, yeah, you just gave him, I don't know how many grams, but so of course he's like 300 now or something. So yeah, it was definitely a roller coaster.
00:19:58
amandacberg
Oh my god.
00:20:01
Katie
Um, and so I'm trying to think what happened after that. You know, there's a team of doctors that comes in, um, Amanda, I know that you also had the like crash course of the education that is hours long and you're trying to process all of it.
00:20:16
amandacberg
Mm hmm. Hmm.
00:20:22
Katie
um I think I'm trying to think of it. And then also, you know, you're trying to emotionally process this too. And Amanda, I know that you were there by yourself, right?
00:20:33
amandacberg
Hmm.
00:20:35
Katie
So, and um it was me and my husband and my kid. Um, so we were able to support each other a little bit, but it was kind of like, okay, you leave like my husband and myself, like, all right, you can leave for your five minute freak out now down the hall.
00:20:50
amandacberg
Yeah. Yeah.
00:20:51
Katie
And then we'll switch in a minute.
00:20:52
amandacberg
Yeah.
00:20:53
Katie
Just, there's, there's so much that happens in such a short amount of time.
00:21:00
Raquel
So once you got home from that experience, what was that moment like? Like, I know Amanda was kind of like, Oh my gosh, what now? And then having your husband, all the things, like, what was that experience like for you?
00:21:08
Katie
Yeah, yeah.
00:21:14
Katie
When we got home, it was, so Amanda, I don't know if this is similar to your experience in the hospital and I i know you're coming from a nursing background too. They in the hospital, um they basically treated insulin like, I don't know how to explain other than it's like radioactive.
00:21:34
amandacberg
Yeah.
00:21:35
Katie
or something, okay. So there're they they put this fear in you of there better be no bubbles in there.
00:21:37
amandacberg
Yeah.
00:21:42
amandacberg
Yep.
00:21:45
Katie
You better not give any more than you absolutely have to. they um The nurse will draw it up and then they call in the protocol at the hospital, they call in another nurse to double check the dosage.
00:21:56
amandacberg
Yep.
00:22:00
Katie
um And so I'm like, oh my God, if like we better not ever accidentally give him, you know, any more than he needs. Like, so you come home and I'm thinking, um, his first meal, I think he wanted, wanted a corn dog and he wanted like strawberries or something like that.
00:22:18
amandacberg
Hmm, yeah.
00:22:19
Katie
Okay. I'm so typical kid food. And so I remember weighing the strawberries because I'm like, and then asking, does that look like five carbs to you or six carbs to you?
00:22:30
Katie
And so it really, The experience of the hospital versus everyday life is very different, but it did take some adjustment and some, I guess I'll call it kind of like unlearning some of the things to make it more livable, to make it more, make more sense, I guess.
00:22:39
amandacberg
Yep.
00:22:51
amandacberg
Yeah.
00:23:02
Katie
um
00:23:02
amandacberg
So, okay. My question here at this point, when you're home, did you go home and feel like, okay, I understand type one diabetes as a disease process and now I am just learning my child's needs or were there missing gaps in the understanding of the disease process that would have been super helpful in real life practice?
00:23:32
Katie
Uh, absolutely. I mean, I, I felt like I left with like a fire hose of information at me.
00:23:42
amandacberg
Yeah.
00:23:43
Katie
Um, I left basically living in fear of a low.
00:23:46
amandacberg
Yeah.
00:23:49
Katie
Um, the biggest gap I think is, um, you know, I'm really fortunate. My husband is such an incredible partner and such an incredible dad.
00:24:02
Katie
um And he, we're very different in the way that he wants to start absorbing as much information about the thing as possible right away, like as much as he can.
00:24:10
amandacberg
yeah
00:24:12
Katie
I am different, and like I just know, like I need to just dip my toe in a little bit and get kind of what I need.
00:24:17
amandacberg
Yep.
00:24:19
Katie
um And so a lot of what like comes through him then like, hey, I read this, I read this. And um and he like on the third or fourth day,
00:24:30
Katie
um Because when I'm still emotionally processing what's happening too, you know there's there's a lot of grief that happens um in that moment.
00:24:34
amandacberg
Yep.
00:24:44
Katie
um Probably any parent who's had, or you know any person, you have like this expectation and then this is the reality of life and then you have to grieve that.
00:24:53
amandacberg
Yeah.
00:24:53
Katie
But but anyway, so he comes to me and I'm you know crying, processing it, just thinking like this is not, I wouldn't have been able to articulate it at the time, but this is not what I thought was gonna happen. And this is not the road I thought we were gonna be on. And he, um similar to when the doctor called me and was like, this is gonna be fine. We're gonna meet your kid. We're gonna get this. It's gonna be okay. um He, my husband said, he will be able to do everything that he wants to do. um He just has a different fueling system now.
00:25:30
amandacberg
Hmm. Oh, that's so sweet.
00:25:31
Katie
and And it just, like, it was such a moment of clarity for me because it was like, and I don't remember exactly what you said, but it was like, he just has this different fueling system out and a lot of the fueling is happening externally versus the rest of us, it's happening internally.
00:25:35
amandacberg
Wow, I love that.
00:25:53
Raquel
Hmm. Hmm.
00:25:55
Katie
And that really, like I said, was a moment of clarity for me. I was like, okay, i can I can figure out how to help fuel my kid so that he can do everything that he wants to do and he can feel good. um Whereas leaving the hospital, like I said, you're, oh my gosh, is he going low? Is he high? Should we give 0.5 or just let it go? Should we give like, and or and then also the,
00:26:26
Katie
but are not given insulin within three hours of the last dose and that kind of thing. Like there's just so much, like I said, um, unlearning sort of that takes place. And so that's what, I mean, I'm so, so happy that we were able to find you
Community Support and Management Techniques
00:26:42
Katie
guys.
00:26:42
Raquel
How did you find us?
00:26:45
Katie
So I was telling you before that I have basically like a minuscule social media presence, um, and
00:26:50
amandacberg
where
00:26:54
Katie
And again, like I shared with you before, so I'm a person of faith. And so I have on Instagram, I think I follow like 300 people total. um And it just so happened that within the last year, two of those families had kids diagnosed with type one.
00:27:11
amandacberg
Oh wow.
00:27:12
Katie
And it's like, you know, kind of one of the odds of that, like similar ages to my kid. um And we're in the first week and I,
00:27:23
Katie
was on there and I sent a message to one of the moms. And I was just, i it was a moment of just like, I'll have to look back and see what I said, I think. Cause just to see where I wasn't, but it was just like, I need someone to tell me that he is going to be okay. Like that, that I'm going to, I was like, I'll do whatever it takes, but just what don do I need to do?
00:27:48
Katie
um and she was really kind enough to respond and just And in fact now that I'm thinking about it and she gave me her phone number We text it she was just like what can I do for you?
00:27:59
Katie
And she goes I follow these three people you guys are one of them um And I was like, okay, so I did that immediately um and Because I mean as you guys know there's so much out there and again, I know that I I
00:28:03
amandacberg
Hmm.
00:28:03
Raquel
Mm
00:28:16
Katie
I need to just kind of dip my toe in. And so I was like, okay, this curated list is coming from, um, this really kind mom.
00:28:19
amandacberg
Yeah.
00:28:24
Katie
And so I followed you guys. And I think honestly within a week of that, that you guys had to advertise that you had this better together last coming up from like, okay, I'm doing this.
00:28:28
Raquel
hmm. What is crazy timing?
00:28:33
amandacberg
Wow.
00:28:35
Katie
Yeah.
00:28:36
Raquel
Yeah.
00:28:36
amandacberg
Wow.
00:28:37
Katie
Yeah.
00:28:38
Raquel
I feel like, so you were definitely the most recently diagnosed family in that first program that we did. At the time, were you only two months in or three months? It was super early.
00:28:47
Katie
I think was it about March or something that you guys started or like, yeah.
00:28:49
Raquel
Yeah. very March.
00:28:52
Katie
Cause I think when I signed up, then it was like a month or so.
00:28:53
amandacberg
i Yes, I remember.
00:28:54
Katie
and I don't remember exactly, but yeah. So I mean, we were the newest for sure.
00:28:59
amandacberg
I remember when you filled out the form, you guys were the newest because I remember reading six weeks and I called Raquel and I was like, holy shit, there's a family who's six weeks post-diagnosis because yes, because that is our goal.
00:29:02
Raquel
Yeah.
00:29:03
Katie
Okay.
00:29:09
Raquel
We gotta get them in.
00:29:13
amandacberg
Like we want, I mean, we want to help any family at any point in their journey, of course, but like to alleviate as quickly as possible, all the stress and anxiety around it is like, uh, that just fuels our fire, you know?
00:29:17
Katie
Right, right, yeah.
00:29:28
Raquel
Yeah. And we had a big range of time with diabetes in there. Like I forget the longest, but most people are probably around the two, three, four year mark.
00:29:32
Katie
Right, right.
00:29:37
Raquel
But I think that's actually really helpful because you all helped each other so much when you're part of one of these programs, you not only get the weekly calls and discussions, but you also get the group message that still exists today and people are still talking and it, which is so sweet.
00:29:48
amandacberg
and Yeah.
00:29:50
Katie
Yeah.
00:29:50
Raquel
Um, but I do remember like just seeing the progression of your family going from stepping into those calls and being like, whoa, they're talking about diabetes so differently.
00:30:00
Raquel
Like I'm i'm curious to hear your perspective because I feel like we could see that in your face and you were a little more quiet in the beginning. Like this is not what we were told at all in the hospital. And then over those, I think it was, yeah, we did eight weeks for that one.
00:30:10
Katie
Yeah.
00:30:12
Raquel
um A lot changed and I've since had one-on-one calls with you as well.
00:30:13
Katie
Mm-hmm.
00:30:16
Raquel
And so much has changed. So I'm kind of curious to dive into that.
00:30:20
amandacberg
Yeah, we walk us through all of that.
00:30:20
Katie
Yeah, I mean, yeah, it's been a wild six months or so for sure.
00:30:23
amandacberg
Yeah.
00:30:27
Katie
to um Yeah, I mean, i we got on and there are, and like just to look at this kind of from a bird's eye view too of just, there's so much um data just out there, just about how important community is in general and just connecting. And so I think that,
00:30:50
Katie
is so positive for what you offer. So even regardless of the ages of the kids or um regardless how long they've been diagnosed, just to get on there you know and there's 10 families or whatever it was, um just knowing, okay, they've been living with it for this many years um and they're just a normal family like us too.
00:31:10
amandacberg
Yeah.
00:31:10
Katie
I think that is so valuable to be able to see yourself in them and know that you're gonna get there too. um Because if you would ask me in January in the hospital or a couple weeks after, it's like you can't conceptualize how um your like your life is going to change, but how much you will integrate it into your life. um Just that it will become your norm.
00:31:40
Katie
And people told me that at the time, but I was like, yeah, right. Like, and just, um, yeah. So I think that is super valuable. The, um,
00:31:56
Katie
I'm trying to think. Yeah. I mean, we were coming in, like, I was still literally reading the the hospital gives you like the big spiral bound book. um stuff I was still going back. Like.
00:32:11
Katie
You know trying to go back and read some of that stuff and which is certainly helpful in some respects but to see um To see families how they lived it out every day and then also I think that what you guys are offering is um is such a different perspective than what we received in the hospital, like medically.
00:32:37
Katie
I know you guys aren't giving medical advice, but as far has as, far as you know you you know intuitively that um like giving your kid a ton of skittles every day, regardless if they have type one or not, is not
00:32:39
amandacberg
who Yeah.
00:32:55
Katie
that best and doing, you know, just like I said, dipping my tone, but just doing the the bare minimum of research trying to understand what is blood glucose and what are the long-term impacts of um high glucose, et cetera.
00:33:14
Katie
It's like, well, probably leaving someone at 250 all the time is not good. And I would not necessarily have been able to articulate why at that time, but just, like I said, i you know intuitively, you know that this isn't right.
Critique of Medical Community's Approach
00:33:30
Katie
um But the kind of rhetoric that you
00:33:32
amandacberg
Yeah, it just makes sense.
00:33:34
Katie
right yeah right yes yes and that is um that's the rhetoric that you get a lot of times from the medical community because it is like if i had a nickel for every time that
00:33:34
amandacberg
It's like if normal humans don't really go above 130 ever, why would we just let our kids sit at 250 for hours or days on end? Like, yeah.
00:33:44
Raquel
Hello. Yeah.
00:33:50
amandacberg
Yep.
00:33:57
Katie
somebody told me either from the school or from like medical stuff like let it we're gonna let them run high just we'll let them run a little bit high if I didn't nickel for every time I heard that you know I'd have a lot of niggles but so so when like it just um resonated with us so much where you guys are coming from which is so much more
00:34:05
amandacberg
Yep.
00:34:11
Raquel
but
00:34:18
amandacberg
Hmm.
00:34:26
Katie
I mean like literally medically sensible because you can have like it just knowing like your kid or you somebody with type one like you can have what would be considered a normal A1C like that is possible. it It's not real easy a lot of the time, ah so but just knowing that and then having some steps or, you know, to get closer to that, like your A1C doesn't have to be seven.
00:34:48
amandacberg
No, no, it's not.
00:35:02
Katie
You can somewhat easily, and I say this with, you know, certain level of privilege, et cetera, but it's like somewhat easily, you can get to 6.2, you can get to 6.3, which is still,
00:35:11
amandacberg
Yeah. Yeah.
00:35:16
Katie
high for a normal person. I hate to use that word. It's not the right term, but you know, somebody without type 1 diabetes, um that would still be considered high, obviously.
00:35:21
amandacberg
Yeah.
00:35:22
Raquel
it's fine
00:35:24
amandacberg
yeah
00:35:28
Katie
But it's like, you don't have to be seven. You don't have to be 7.3.
00:35:30
amandacberg
Yep.
00:35:31
Katie
Like it just...
00:35:33
amandacberg
Can you explain how our education style differed from the education style from doctors and nurses?
00:35:44
Raquel
That's fine.
00:35:48
Katie
Again, I think they're they're coming from a place of fear of a low, which I guess I can sort of see just like looking historically or something before there were these various resources um to,
00:35:54
amandacberg
no Yeah.
00:36:12
Katie
you know in real time, see the trends. um But I guess, and I don't say this cavalierly, but I think working with you guys, it meant like, I am not afraid of a low.
00:36:30
Katie
No.
00:36:31
amandacberg
Yeah.
00:36:33
Katie
And again, I'm not saying like, no, lows are no big deal. That's certainly not what I mean.
00:36:33
Raquel
Yeah.
00:36:36
amandacberg
Yeah.
00:36:37
Raquel
Right.
00:36:37
amandacberg
And we are definitely not out here advocating in a way that's like, Hey, let your kid run low all the time.
00:36:41
Raquel
Yeah.
00:36:45
amandacberg
But what we do push for is learn how to use insulin so that your kid can eat food.
00:36:45
Katie
Absolutely.
00:36:45
Raquel
Right.
00:36:46
Katie
Yeah.
00:36:46
Raquel
But the fear of light.
00:36:50
Katie
Yeah.
00:36:52
amandacberg
And so that your blood sugars are in a healthy range, not don't, don't fear insulin, learn how to use insulin.
00:36:56
Katie
Yeah.
00:37:00
amandacberg
It's like wild.
00:37:00
Katie
Yes, like it's not it's not radioactive. It is is the most, I mean, i I am so incredibly thankful that this thing exists, you know?
00:37:12
amandacberg
Mmhmm.
00:37:12
Katie
um And it is a tool for you to, for either you personally or for you as a parent to um, help your kid feel better in the short term and the long-term.
00:37:27
amandacberg
Yeah.
00:37:27
Katie
And so I think that the typical rhetoric that you get from doctors, et cetera, is really short-sighted.
00:37:28
Raquel
yeah
00:37:39
amandacberg
Sure.
00:37:39
Katie
It is how can we avoid lows right now?
00:37:44
amandacberg
Yeah.
00:37:44
Katie
And I know, like, you know, again, I understand that that is more emergent in the like current situation like that. But in the long term, that's not what I'm going for.
00:37:58
Katie
And that's not what we're going for as a family. And I feel like that is, that was communicated to us really well in the class from you guys, because it was like, we knew, like I said, intuitively, like, it doesn't make sense that we should let him be at 300.
00:38:13
Katie
But I didn't know. I don't know what that looks like for like real life.
00:38:15
amandacberg
Yeah.
00:38:17
Katie
How do you, what do you do to make that happen?
00:38:20
amandacberg
Right. I'm also curious because my, the whole reason like Raquel and I built this out and we include the specific topics that we do in Better Together is because of the major gaps that we're missing in my education from our healthcare system and the major gaps in Raquel's education and or just lack thereof and stuff that she learned on her own that led to her beautiful management and so we're like really passionate about making sure those pieces of the puzzle are included in the educational process.
00:38:57
amandacberg
I'm curious if you had that kind of education from your healthcare care team or if what we were presenting and better together was completely new information.
00:39:07
Katie
Mhm.
00:39:09
Raquel
Mm.
00:39:10
Katie
Mhm. Oh, that's such a great question. And I, I really actually I get a little bit hot about this question because um I feel that ah understanding how to um like treat your kid or yourself, but primarily Ryan talking about my kid, how to treat him so that he can be in those good ranges.
00:39:39
Katie
I think um the medical team, I'm making generalization here, but I think that what is out there is
00:39:44
amandacberg
Mm hmm.
00:39:50
Katie
first you have to kind of show that you are either a person or a family who who wants that and who's like willing to kind of go the extra mile for it.
00:39:54
amandacberg
Mm hmm.
00:40:04
Katie
I don't know if I can articulate this exactly right but it's like you know we were approaching them with really specific questions um about how to do that and I think if we didn't come at them with that, I think we would have got the generic run of the mill um thing of let them run high.
00:40:21
amandacberg
Mm.
00:40:26
Katie
It's okay if he's around 200 or whatever. And I think that there is um you know a huge population of people that when a medical professional tells them 200 is fine, um that they'll say, oh, well, they said it was fine.
00:40:28
amandacberg
Mm.
00:40:43
Raquel
And that's why it's not okay, if I'm gonna say it, because people believe it.
00:40:43
Katie
And they will just
00:40:45
amandacberg
Yeah.
00:40:45
Katie
Yes and that's why like it makes me hot like because that is just not it is not best practices um and I'm also well aware that you know they are in a lot of cases super overworked and etc like there's a lot there's a lot happening um and then but I do like um for example like here's a little anecdote so
00:40:49
amandacberg
Yeah.
00:40:59
amandacberg
Mm hmm.
00:41:11
Katie
To get, my understanding kind of is like to get as tight of control as you can that a pump is your best option for that. Okay, so, and I know that's again a generalization, but um so we really pushed hard.
00:41:28
Katie
We had to push for a Dexcom. We had to push for a pump.
00:41:31
amandacberg
Outrageous. Outrageous.
00:41:34
Katie
Right.
00:41:34
amandacberg
So dumb.
00:41:36
Katie
Yes, like this should be standard practice that like the Dexcom should be it.
00:41:38
amandacberg
Yes.
00:41:42
Katie
um like base Like that should be baseline standard of care for sure. We had to push for that. But again, like, I'm going to advocate for that.
00:41:53
Katie
um There are some families that will hear a no for the Dexcom and then say, oh, well, they said no. And so we don't have one kind of thing. um And then So we went through this when we recently got a pump and Raquel I had, when you were talking about the online um chat group thing that we have with it.
00:42:14
Raquel
Crazy.
00:42:14
Katie
So that like, so we got to know from our insurance for the pump.
00:42:19
Katie
And there was a couple of reasons, but one of the, one of the main reasons was that my kid's A1C was too low.
00:42:19
amandacberg
Mm.
00:42:27
amandacberg
Oh my God.
00:42:29
Katie
That it was not. over seven and because he was not over seven that that wasn't their standard of care to um allow you to have a pump or, you know, to get pump through insurance.
00:42:40
Katie
ah
00:42:40
Raquel
Which pumps literally now suspend insulin if you're dropping.
00:42:44
Raquel
So if they're worried about lows, it would make more sense to be on a pump.
00:42:45
Katie
Like it was more, it was the reasoning as far as I understood the reasoning was, well, you guys have too good of control on this with your MDI.
00:42:54
Raquel
Stop.
00:42:56
amandacberg
Look, I am already in such a triggered emotional state because of all that school shit that's going on with me.
00:42:59
Katie
Yeah. Yeah. right right i know that yeah and so i was like literally it it was like okay so we're being punished for trying to take too good of care of him basically so if if i just let him go and he was at 8.5 or whatever like okay yeah you guys need a pump um
00:43:01
amandacberg
And I just want to, I feel like my body is catching on fire.
00:43:26
Katie
We appealed and have since got it, um but it is that kind of thing that really makes me upset
Educational Insights from the Program
00:43:35
amandacberg
yeah
00:43:35
Katie
about, you know, and I know most of this is insurance too, but just, I think the they need to figure out some, I don't know, better standards of care that meet the short and long-term needs of the patients.
00:43:35
Raquel
Uh
00:43:39
amandacberg
Yeah. yeah
00:43:41
Raquel
-huh.
00:43:55
amandacberg
For sure.
00:43:56
Katie
Um,
00:43:58
amandacberg
Can you speak to the the part of Better Together where we go over people's graphs and we discuss how the 42 factors that affect blood sugar interact with insulin timing and things like that? Like, did you hear that kind of education from your medical care team?
00:44:19
amandacberg
And if you did, what were the differences? And if not, how did that education from better together improve your management if it did improve your management?
00:44:32
Katie
I mean, I think what is just like the the pushback that we often get from our medical team is just like, well, you guys are good. Like he's he's doing fine. You're good. um I think like even when you're talking about the graphs, I still hear in my mind, it might have been the first first group session or something but it was this is how kind of like new I was to this you guys showed the graph of like okay if you if you stay high you didn't have enough like if you go up and you stay high you didn't have enough insulin if you go and then you go too low you had too much insulin and that is
00:45:11
Katie
Like that was the kind of simplistic information that I needed in that moment. And I'm not kidding you when I still hear that in my mind.
00:45:15
amandacberg
Oh my God.
00:45:18
Katie
Like I will still say as I'm, as I'm looking at his graph, I'll um ah still say to my husband, oh, I think he had too much insulin with that. He obviously went down and then it was, or, or vice versa.
00:45:33
Raquel
Well, we overthink those things way too much.
00:45:33
Katie
um
00:45:35
Raquel
And that's why we start there on the first call with going through the most simple explanations before we go into the deep end with the more complex stuff.
00:45:36
Katie
Yeah.
00:45:41
Raquel
is it's like Sometimes you just need to look at a graph and be like, oh, hi for five hours. You need more insulin.
00:45:46
amandacberg
more insulin.
00:45:47
Raquel
It's that simple.
00:45:47
Katie
Yeah yeah it that is so true and you get like and now I feel empowered to um give him more and it's much easier now that we have a pump to do that um but I would we were giving more injection it's like even
00:45:47
amandacberg
Yeah.
00:45:48
Raquel
Come on, doctors.
00:46:01
amandacberg
Yeah.
00:46:11
Katie
This is a little side anecnote anecdote, but ah when we left, like I went to the pharmacy, got all of his stuff. This is right when he was diagnosed. You know, you have this like bags of stuff um of like the, it all the stuff you need. Okay, you guys know what I'm talking about. So we leave and then I think the box of needles they gave us was 100 needles for the little pin caps for the insulin. Okay.
00:46:41
Katie
Um, 100 is not enough for very long. Um, like, you know, bare minimum, you would need at least four a day for a month.
00:46:48
amandacberg
Yeah.
00:46:51
amandacberg
Yep.
00:46:53
Katie
So that that was okay. So I go back in and I go, Hey, I need to get more pen needles. Um, and. ah she goes well what do you this was the person at the pharmacy what do you mean how many are using and i go well sometimes we're using eight a day um because he needs at least four and then i might have to correct or whatever and this racquel going back to what you're saying it's like they don't they were she goes i will never forget she literally goes i've never heard of anyone using that many
00:47:09
Raquel
Uh,
00:47:28
Katie
i was like I was like, could you go ask the pharmacist maybe? like this is and And so i I've never heard of anyone using them. And I'm like, well, you obviously don't know very much about type 1 diabetes, which a lot of people don't. um But just the fact that like, Raquel, again, your point, you need more insulin.
00:47:50
Katie
Like he needed more insulin. He only got, he got one unit for whatever meal. It wasn't enough.
00:47:56
amandacberg
Yeah.
00:47:56
Katie
How could I have possibly known that in the first, you know, three weeks of this diagnosis, really how much he needed. and And then also not having indexcom and not understanding the trend and all that kind of stuff. But yeah.
00:48:06
amandacberg
yeah
00:48:07
Raquel
Yeah. Um, and then once you transition to the pump, you got the tandem T-Slim, correct?
00:48:14
Katie
We have the Moby.
00:48:15
Raquel
3D of the Moby.
00:48:16
Katie
and Yeah.
00:48:16
Raquel
Okay.
00:48:16
Katie
Yeah.
00:48:17
amandacberg
Ooh, cool.
00:48:17
Raquel
Um, yeah.
00:48:17
amandacberg
How does he like that?
00:48:18
Katie
Yeah. We definitely like it. There is, Raquel is my kind enough to help us out a little bit with it. It's a big it's a big learning curve to go from MDI to PUM, just with understanding how is just the insulin absorption and all that kind of stuff going to work.
00:48:29
amandacberg
Mm
00:48:39
Katie
um We really, for him, it works really well because Um, for when he plays competitive lacrosse, which is a pretty physical game. So he's able to remove it for that.
00:48:50
Katie
And that's best for him. Um, and that has been, you know, we've played a number of tournaments this summer, um, and he's been able to to take that off.
00:48:54
amandacberg
-hmm.
00:48:58
Katie
So we definitely like the Moby love that it, um, just everything interfaces with the phone. There's so much that these kids have to, you know, literally carry around, um,
00:49:10
Raquel
Yeah.
00:49:11
Katie
especially at school for him, part of the procedure is that he has to have literally on his body, his various materials for the day.
00:49:20
amandacberg
Yeah.
00:49:20
Katie
Um, and so I was like, okay, you see, it doesn't have to basically add another phone. And so I really liked that. Um, we're still learning about, um, the most of the lows that we're having at this time are because he's getting corrections that I don't, we still have not kind of fine tuned to understand.
00:49:32
amandacberg
Hmm.
00:49:39
Katie
Um, but also, so Raquel last night, he was going to bed and he spiked after he went to sleep. Um, and just with like the advice that you have given had given us that if he's going high, like give him a little bit and then get him to that baseline at nighttime.
00:49:55
Katie
And that has been super helpful.
00:49:55
Raquel
yeah yay Yeah, one of the things we talked about on our one-on-one call was just
00:49:57
Katie
Yeah.
00:49:58
amandacberg
So good.
00:50:01
Raquel
the different options with the different profiles you can make and the different times you can set throughout the day.
00:50:04
Katie
Right.
00:50:06
Raquel
I know that's something they didn't even really talk to you about, which again is just so frustrating. Um,
Importance of Community Support and Reflection
00:50:12
Katie
No, not at all. Not at all. so They didn't talk to us about that at all.
00:50:12
Raquel
but like those little things.
00:50:14
Raquel
Yeah, I am. I'm working with another family right now with T-Slim and by the way, I am in a contracted agreement with tandem diabetes right now. I have to say that. Um, but I am thinking of opening up a couple other one-on-one spots.
00:50:25
Raquel
If anyone else is looking for control IQ help, not medical advice, of course, but just kind of walking through the algorithm and how it works and how the profiles work, feel free to reach out. um I'm probably not going to like push it too much online, so just reach out privately if you'd like that.
00:50:41
Raquel
um But I'm glad those little things have made a difference because they really can. I spiked a little last night too because like we ended up having a little dessert last night and I went to bed and I was like 90 and I was like, oh, I'm probably fine, but then it's that delayed.
00:50:45
Katie
Big time.
00:50:53
Raquel
Delayed spike can be a really big challenge especially when I don't have my mom here to
00:50:53
Katie
Yes. Yes. Yeah.
00:50:57
Raquel
doesn't know I was sleeping.
00:50:58
Katie
Yeah.
00:50:59
amandacberg
LOL.
00:51:00
Katie
Yeah.
00:51:00
Raquel
But yeah.
00:51:01
Katie
yeah but yeah So it's yeah. Cause he had ice cream and something and I was like, okay, sure. And then sure enough, you guys know, like an hour later he went up again.
00:51:13
amandacberg
Yeah.
00:51:13
Raquel
Yeah.
00:51:13
Katie
Um.
00:51:14
amandacberg
Well, we only have a few minutes left before you have to take off, Katie.
00:51:14
Katie
Yeah.
00:51:18
amandacberg
So can you um share with the community and with other parents who are in your same position, whatever you want to say to them, and if you would recommend the Better Together group coaching to them, why or why not?
00:51:35
Katie
I think the the first thing I would say is just that there is such a community available to you. um there are people out there who understand. And if you are feeling isolated, um like you're the only parent dealing with this, um you're the only family dealing with this, spend a few minutes trying to find that community. And obviously you guys are part of that in this type one together, like just what
00:52:12
Katie
other like I thought I knew, so again, a friend of mine, the the angel who came over to check my kid before we went to the hospital, you know i I could sympathize with her.
00:52:23
Katie
like I was like, oh yeah, that must be tough. Nobody knows until they've been through it what it really is.
00:52:29
amandacberg
Mm hmm.
00:52:31
Katie
um And there is a community out there who gets it and can support you and offer you advice and just a listening ear and all kinds of stuff. um And so you will also, if you are, I mean, so I'm six months out or my kid is six months out. Our family's about six months out. You will integrate so much of this. You will amaze yourself with what you're able to do and what you're able to learn and what will become second nature. And, um, you will continue learning along the way. Um, and along with that, you will.
00:53:11
Katie
Like if you would have told me in January that I would like care again about my own hobbies and interests, you know, like that I would be able to for five minutes.
00:53:21
amandacberg
Yeah.
00:53:30
Katie
I'm going to get emotional just thinking about, you know, where I was at that time and just how much compassion I have for myself at that time. um and how much compassion I have for parents experiencing that.
00:53:38
amandacberg
yeah
00:53:41
Katie
If you would have told me, you know I love to read, I love to work in like my garden and all this kind of stuff. like If you would have told me, you will care about going to the flower store to pick out flowers again.
00:53:54
Katie
um I would have said, like no, I won't. You're crazy. like
00:53:59
amandacberg
ye Yep.
00:54:00
Katie
Um, this is my whole life. This is, um, and, and also as a parent, like gladly.
00:54:03
amandacberg
Yep.
00:54:06
Katie
So, you know, because this is my purpose, but you will integrate diabetes and yourself. Like, I don't know if that makes total sense, but just like you will get there.
00:54:18
amandacberg
It does.
00:54:20
Katie
Um. And to help yourself get there, there's really a lot of tools in the community as part of that. And um even stuff like therapy is part of that too, which I could not recommend more for families who are going through this um for the kids and the parents and stuff. It just, um there's a lot, like I said, of grief that happens with it and and grief has to be processed. And then it it pops up at just random times that you don't expect it. And you have to just honor that too.
00:54:50
Katie
along the journey.
00:54:51
Raquel
Thanks.
00:54:52
Katie
So again, you will care again about your own self and about your hobbies and about, you know, um pouring time into your relationship with your spouse and all that kind of stuff.
00:55:05
Katie
um And better together is like such a, for our family, my husband and I actually have this conversation quite often about like, how we just,
00:55:19
Katie
happened upon you guys really. like um And just how much we identify with um the mission that you have, but then also you're the way that you address and diabetes and how much i it aligns with how we feel about it and the community part of that. So it's been months now or I don't know, but since the group ended and people are still, I mean just over the weekend we were chatting a little bit in the the online group um just to know that somebody else is going through it and they support you and they get it. I think that um
00:56:04
Katie
Like i I just, I credit you guys so much with what you're offering because um what I think that, you know, we were given enough to survive in the hospital. Like i here's what you need to do to basically get by. And we were looking for more than that. We were looking for a way to support our kid as much as we could.
00:56:31
Katie
um Like I said, for the short term and long term, and I just really feel like, um, that's what we got with you guys.
00:56:41
amandacberg
Oh, thank you, Katie.
00:56:45
amandacberg
but
00:56:45
Raquel
Thank you so
00:56:48
amandacberg
ah
00:56:48
Katie
And you know, even, ah so I'm thinking you guys did the episode with the 504 person.
00:56:48
amandacberg
no
00:56:53
Katie
I'm blanking on her name and stuff, but, um,
00:56:55
amandacberg
But... Mm
00:56:56
Katie
or you know the the person that was talking about getting 504s through school, and a man I'm just thinking about what you're dealing with at the moment, but just all of those little nuggets of information are so helpful.
00:57:00
amandacberg
-hmm.
00:57:09
Katie
We put together my kid's 504 at the end of the last school year, and it is in place now for him as he's making a huge transition to middle school.
00:57:11
Raquel
much
00:57:17
amandacberg
Yeah.
00:57:17
Katie
um And the those kinds of things, like you don't you don't know, I mean, I know I start thinking I come from a public school background, so I've been around many 504s in my time teaching and have attended many 504 meetings, um but I did not know what to ask for.
00:57:43
Katie
You know, I didn't i didn't know what, it's just situation, like you don't know what you don't know.
00:57:43
amandacberg
yeah
00:57:50
amandacberg
Yep.
00:57:50
Katie
And what you're putting out there is so valuable to us as a community.
00:57:57
amandacberg
Well, thank you so much. And thank you for coming on and like sharing everything. the Both groups of Better Together are very important to us.
00:58:09
amandacberg
Our first group will forever hold a super special place in our hearts just because it was a first one.
00:58:13
Katie
I'm still waiting for a retreat whenever you do this.
00:58:15
amandacberg
Yeah, I know.
00:58:15
Raquel
Yes. One day.
00:58:18
amandacberg
We need to make it happen. um Yeah, you guys all over the course of those two months became like family to us and you know that we're always here for your family.
00:58:30
amandacberg
So yeah, just thank you for everything.
00:58:32
Katie
Yeah, thank you.
00:58:34
Raquel
Yeah, thank you. And we're so proud of you. Like, it's been so cool to see how far you've come. And I'm honestly jealous that you've been able to come this far so quickly. um I wish that I had that experience and that all the families could have that experience, but of course, without the negative parts of your story, too.
00:58:49
Katie
Yeah, yeah.
00:58:50
Raquel
um And anyone listening?
00:58:51
Katie
That's part of it though, you know, you have to, there's so many, so many things you learn from as you're going.
00:58:54
Raquel
Yeah. I have to go through it.
00:58:59
amandacberg
Yeah.
00:58:59
Raquel
Exactly. If anyone's listening and wants to be part of one of these groups, we are launching a new one at the end of August um that will start in September. And we're kind of doing a different style this time.
00:59:12
Raquel
It's still going to be like the teaching and then the discussion hour, but we're going to have two different groups for the discussions throughout the week so that you can find a time that works best for you and so that we can also help more families because we have a lot of interests.
00:59:25
Raquel
So be on the lookout for that.
00:59:27
Katie
love that.
00:59:27
amandacberg
Yeah.
00:59:27
Raquel
Really excited.
00:59:27
amandacberg
And we're also going to be recording our educational piece and then sending that recording out before the weekly calls um in an effort to spend more time working on everyone's unique needs and graphs and everything like that.
00:59:45
amandacberg
So that'll be a difference too.
00:59:45
Katie
So valuable. love
00:59:48
amandacberg
All right. Well, should we do a roll call?
00:59:50
Raquel
Yeah, I've let you a real call.
00:59:52
amandacberg
Okay, Hattie's at 204 and I will freaking take it for right now. We will deal with all the high blood sugar issues at a future date.
01:00:01
Raquel
Yeah, I'm 136.
01:00:04
amandacberg
Nice.
01:00:05
Katie
All right, my kid is 201.
01:00:10
amandacberg
Sweet.
01:00:10
Raquel
So close.
01:00:11
Katie
Post breakfast, 201, I'll take it.
01:00:14
Raquel
How it goes.
01:00:15
Katie
He was, he had some independence this morning. I've been doing his own dosing, his own breakfast, all that kind of stuff.
01:00:18
amandacberg
Perfect.
01:00:19
Raquel
Nice.
01:00:20
amandacberg
I love that.
01:00:21
Katie
So, yeah.
01:00:22
Raquel
Take it.
01:00:22
amandacberg
Awesome. Okay, everyone will we will see you next time.
01:00:27
Raquel
Thank you, Katie.
01:00:27
amandacberg
Bye. Thank you.
01:00:28
Katie
Thanks guys.
01:00:28
Raquel
Bye.
01:00:28
amandacberg
know me Bye.