#1897 Face Your Face
Face Your Face
Three siblings, all type 1. After her identical twin — also type 1 — died, she's learning to be a ‘me’ after a lifetime as a ‘we.’
Jump to a moment
- A rare in-womb condition, TAPS (twin anemia polycythemia sequence), left the identical twins with very different vascular systems — Cassie’s vessels wide, her sister’s narrow and stiff. Because type 1 is hard on the vascular system, her sister faced compounded complications. TAPS wasn’t formally recognized until 2007; the family only recently found answers.
- Three siblings have type 1 with no family history of diabetes. Identical twins sharing DNA explains two; a third is genuinely unusual. Screening programs like TrialNet can flag elevated type 1 risk in relatives.
- Let the people close to you learn your diabetes. Cassie spent years shielding her partner from the “mental load” — until a scary low showed her that keeping him in the dark was the real danger. Loved ones who know how to help are a safety net, not a burden.
- Access and education shape outcomes, not just effort: decades across the Humulin/Humalog era, an insurance gap at 18, and — for her brother — type 1 inside a correctional facility (twice-daily fixed doses, no carb ratio, no glucose gel allowed).
- Grief, and “being a me after a lifetime as a we.” Twin loss is uniquely isolating with few resources, and medical trauma often goes unseen. What helped Cassie: therapy, the basics (consistent meals, sleep, water, sun, movement), and choosing to accept the gifts of survival rather than run from them — doing it, finally, for herself.
- Twinless Twins Support Group International — support for people who have lost a twin (verify URL)
- TAPS Support Foundation — twin anemia polycythemia sequence awareness (verify URL)
- TrialNet — free type 1 risk screening for relatives (verify URL)
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith (verify slug)
- Diabetes Pro Tip Series — foundational management series (verify slug)
- Juicebox Podcast Facebook Group — community around type 1 (verify URL)
- Juicebox Podcast — all series and free resources
Every word of the conversation
Three Siblings, One Diagnosis0:00
Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.
I have type one diabetes. My identical twin sister had type one diabetes, and my older brother has type one diabetes.
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Hi. My name is Cassie. I am here to talk about type one diabetes and siblings, address twin loss, and talk about a little bit of how twin to twin transfusion or taps can affect the vascular system and type one diabetics in the long run.
Cassie. Jeez. Becoming prepared.
I am prepared.
I feel like I'm gonna have to listen harder. Do people call you Cass?
Yeah. Some people do.
Do is those people people you like, or you prefer when people call you Cassie?
No. Cassie's fine. People close to me call me that.
Oh, well, not close to you. I can't do that.
You know what, Scott? I feel close to you, but unless I can do your podcast for a minute.
Oh, alright. Well, then if I slip into that, you you won't be offended. I appreciate that.
No. Not at all.
Let's start at the beginning. You have diabetes?
Yes. I have type one diabetes. My identical twin sister had type one diabetes, and my older brother has type one diabetes.
Wait. You are one of three children, all of whom have it?
Yes.
And do your parents have any autoimmune issues?
My mom has, like, hypothyroidism. My dad has arthritis, like rheumatoid arthritis. Mhmm. But we don't have any family history of diabetes.
Okay. No type one that you guys could find in the extended family? No. How about the brothers and sisters? Did you guys have anything other than type one?
So my sister, she had a slew of things. She had all kinds of mysterious illnesses along the way that took us a very long time to find answers to. My brother, he's pretty healthy. He's type one. Other than that, he's had a few complications with the type one, but overall, pretty healthy.
Okay. How old are you?
I'm 32.
32. Is your brother older or younger?
He's older. He's 35.
Losing Her Twin3:32
And then I guess I have to ask you, how long ago did your sister pass away?
So it's actually gonna be five years on Friday.
Oh my gosh. I'm sorry.
I know. It still feels like yesterday.
I was gonna say, is the difficulty got lessened at all, or what's it like knowing that it's coming up on Friday?
I would say the difficulty, it has lessened a little bit, but it still kinda feels like I'm right there. Still kind of in that same headspace, that same day five years ago. And every year, this time of year comes around, I start feeling a little off, and I'm like, what's wrong with me? Yeah. And then I'm like, oh, well, this makes sense because your body remembers.
Yeah. Hey. Are you were you guys identical twins or fraternal?
We're identical.
Can I ask a really difficult let me ask the difficult question in the first three minutes? Okay? And then we'll we'll get through this. Is what's it like to look into a casket and see somebody that looks just like you there?
So she was cremated.
Okay.
So I didn't particularly have that experience.
I feel like I'm glad
for you. Was with her when she passed.
Yeah.
And it was a strange moment because I knew. Like, I knew the exact moment she wasn't there anymore. I guess maybe, like, the equivalent to seeing her in a casket is maybe even just looking in the mirror Mhmm. And having other people, you know, telling you, oh, you look you look just like her. Seeing you, it reminds us of her.
It's it's a little bit of a tricky one.
Yeah. I was gonna say. Right? Because there are people that miss her that see you. Right?
Yes. And I'm still close with a lot of people who are close to her, her husband who took very, very good care of her along the way. We've been friends since high school, so he's still a pretty active member in my family. Mhmm. And then some of her friends, I'll catch here and there.
And then I come from a very large female dominant family. We're all very close, and they're a huge support system.
I'm glad. Yeah. Did she have children? No. Okay.
Do you find that when you're like, when people who miss her are in your presence, does it bring them comfort or sadness, you think?
I'm not sure. I would imagine it would probably make them a little uneasy because I feel like it would make me a little uneasy.
I mean, yeah, I feel there's an entire conversation just in this part of your story right here. Is it a thing you think about much, or are you right now going, why is this guy who makes a diabetes podcast digging into my psyche?
No. I I think about it waking up in the morning. I think about it when I go to bed at night.
Yeah. I would imagine. Oh my gosh. Okay. Alright.
We're gonna get past this part, but I cannot guarantee we're not coming back to it. So are you diagnosed at what age? You?
Diagnosed at Three, in the Humalog Era6:35
I was diagnosed at three and a half. Oh. My sister was diagnosed at three.
You were six months after. Apart. Yeah. Yeah. Mhmm.
And and your brother before or after you guys?
Quite a bit after. He was 12 years old. We would have been about nine.
Okay. You were not so maybe three years after you were diagnosed?
Six years.
No. Say I'm sorry. You were you I'm sorry. You said you were three when you were diagnosed?
Yes. I was three and a half. My brother was 12. Would have made my sister and I about nine or 10 when he was diagnosed.
Gotcha. I'm sorry. I I lost one of the steps in the math equation there
for a minute. That's okay.
I really did. I was like, what happened? Why did I get so confused? My gosh. So your mom raised two, three year olds with type one.
How long ago?
So we were diagnosed in '97. So this is before Lantus and right in the era that Humalog was approved. So we're talking about, like, the Humulin n, Humulin r era Yeah. Of insulin.
Thirty years ago, maybe?
Yeah. Yeah. Just about thirty years.
Yeah. Wow. Wow. Wow. Okay.
Did she look crazy by the time you were in high school? Did you look at her and, like, think like that lady needs to go for a walk and sit on a beach, or how did she manage it?
A 100%. I have no idea how she managed it. You know, in one of your podcasts a little while back, I think it was Behind the Cheese, you were saying how you think you could sneak in and change a pod out on your daughter without her noticing. Mhmm. And there was a lot of that.
There was a lot of sneaking into the room at night and poking fingers, checking blood sugar levels, trying not to wake one of us because if one of us woke, the other would wake. So I can't even imagine she pretty much did it on her own.
Oh, what a great title for an episode, Behind the Cheese. Is that where they kept the insulin?
Yeah. Yeah. That's awesome. Think that was an older episode. I just listened to it, though, and really enjoyed it.
Honestly, it's one of my skills picking the title. But I have so few marketable skills.
That's a good one. I
Cassie, I just the other day thought to myself, I have to keep this podcast going. I don't know what else I'm qualified to do. I'm too I'm I'm too young to retire, and I'm too abjectly unqualified to do anything else.
Well, the community needs you, so you're gonna have to keep the podcast going for the rest of us.
You're very nice. Thank you. It is really my
Sorry to not give you a choice.
Oh, I don't I don't mind, actually. I I would like to. It's just the fear of how it's I don't wanna I'm not gonna go down this road, but, like, you know, my thing is is held up by a social media structure that is just, I don't know, nebulous. It's hard it it's hard to understand how it works. It's hard to understand when it's gonna shift.
And it just it feels like I don't know. I I really don't know how to put it. It just feels like I'm cruising along on a nice calm ocean. And somebody said to me, we can just keep doing this forever or maybe a, you know, a tidal wave will come and just knock you over and you'll be gone. And you won't see it coming and that'll be the end of it.
And then that that beautiful boat you had, we're we're not getting that again. Like, that's the that's the anxiety I live with around around this work, but that's not the point. The point is is that I'm unqualified to do anything else. So you're Well,
I'm sure the I'm sorry to interrupt
You're not interrupting me. You're a good conversationalist, and I'm not used to that this early in the episode. So go ahead.
I'm sure the uncertainty of that is pretty scary That's all I was gonna say.
Thank you. It really is. I don't wanna complain because, you know, people take holes for a living and things like that, and it it's unseemly. But I do worry about it. So your mom is raising two little girls with type one.
Your brother is probably just off on the side going, man, I dodged one here, didn't I? And then it hits him. So when it gets to him, what's your remembrance of him being diagnosed?
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A Diagnosis in the Mountains12:31
So, actually, I remember a lot because we were in a pretty precarious situation because we were camping out in the Blue Ridge Mountains
Yeah.
When he started showing symptoms, you know, being thirsty and using the bathroom a lot. Because of my sister, my mom was able to identify the signs pretty early. So I didn't go into DKA yet diagnosis. My brother did, but mainly from lack of resources from where, like, we were at. Yeah.
So we were so far away from a hospital. I think it took us maybe three or four hours to get them into a hospital. Oh, came on a hospital.
Yeah. Okay.
And then we were in a hospital that had maybe a 100 rooms in it. It was very tiny in the middle of nowhere.
Oh, gosh. Blue Ridge Mountains, is that Tennessee?
I think that's Virginia.
Virginia? Okay. Once I move south Virginia. Cassie, once I move south, I'll know all this. Don't you worry.
I'll blend right in. At the moment, I live in the North. I have no idea what I'm talking about. So you're up in the mountains. You get to there.
He's already in DKA.
I'm not completely sure. I think so. He was showing the symptoms and the signs. Sorry. Excuse me.
You're fine. He looked I remember him looking very pale and almost a little gray, and he was very agitated. And who could blame him? He felt so awful. And then there was, like, a lot of drama around the campsite with my cousins, and they're bickering.
And he was bickering with people. He didn't feel good. And then it just kind of, like, dawned on my mom. Like, oh, shit. This is what's happening.
I've seen this before.
Have you spoken to her since as an adult? Was she waiting for the other shoe to drop once the first two got it?
I think I think she probably was. I know there's some kind of testing you can do to see if there's what is it? Like, the gene or
Yeah. There's it's like
Something like that.
There's a number of places that do it at this point. I think JDRF does a trial net. There's a bunch places you can get tested to see if it's likely that you could possibly get it.
Yeah. And they've been doing that with his with his children. I think, like, with the two of us having it, it was almost a never pro, like, being identical twins. Our DNA is identical. So that makes sense.
Having a third child in the family, that's a little unique.
Oh, it is.
It just means that Jean must have been extremely strong.
How old's your mom?
Along the line. She is 63.
How would she be on a podcast?
I think she'd probably be pretty good.
Yeah. I I think I might be interested in talking to your mom Monday. That's a that's a pretty a pretty unique situation. Right? Like
I'll let her know.
Yeah. Please. And if then there's no pressure, obviously. But okay. Okay.
So would you consider growing up, the three of you with type one, was it manic? Was it insane, or was it so part of the of life that it didn't feel different or odd?
Trading Insulin From the Couch Cushions15:31
It was manic. Definitely a little insane, but I think that was almost normal for us because we were also adapted to it. And I remember, like, running around and trying to dig insulin out of, like, couch cushions and stuff because we were all trading insulin vials based on who needed what at the time, and stuff would go missing. And then somebody needed their Lantus or someone needed their Humalog and didn't have it. And they're going to the fridge and taking somebody else's prescription.
And it just got really wild for a while there.
Weird question. A lot of times, I'll talk to people where the siblings who don't have type one feel left out. Left out is the wrong word. They feel probably like they're like they're they're sibling with type one is getting more attention. But when you all have it, does that feeling still exist?
Like, if you if I said to you right now, your mom's favorite was do have an answer?
I would say my sister. K. They were just very close and seemed to function a lot on, like, the same wavelength. I think that probably that feeling still existed for him just outside of the fact that he had twin sisters. Mhmm.
So there probably was a part of that that was a little isolating. That may not have anything to do with the diabetes itself.
Do you think your sister thought you or your brother was the favorite?
Maybe. I was, like, a little bit more introverted than my siblings.
Okay.
Like, hung out in my room a lot by myself. And so she was just always a little more social than me. And my brother, he's pretty he's pretty introverted as well, but he's also pretty close with my with my mom. They have their issues, of course, but she might say my brother.
Yeah. Ain't that funny? I wonder what your brother would say.
I know. I'm curious. I should ask him sometime. I
just think it's it's incredibly interesting because we we've when the conversation happens, the idea is, well, because that one has type one, this one feels like you're paying more attention to them because of their type one. I'm gonna tell you, I just think this is how kids feel. And you need a you need a thing to call the reason when you when you say, well, mom's nicer to that one or this one or whatever. Like, or dad does this instead of that one. Dad's I I guarantee you if you pull both my kids in here right now, put one of them in a soundproof booth, ask the first one, you know, do mom and dad have a favor?
They're gonna say yes. It's not true. Yeah. They're gonna say, do you get treated differently than the other one? They're gonna say yes.
It's not true. And, yeah, vice versa. They're both gonna think it was the other one. Fascinating. So I don't know.
I didn't feel like that growing up. But I had
all Yeah. We
I don't know.
Had the conversation actually not that long ago, my mom and I did, around, like, favorite kids. And she was telling me, like, you know, the favorite kid thing doesn't really exist, but there is a certain level of, like, compatibility and interest with some of your kids that maybe you don't have with other kids.
You know, like, your personalities match more.
Yeah. Yeah. So it's a little more that than actually having a favorite. They're still appreciating the differences, but the compatibility kinda makes a difference.
Yeah. Yeah. Both of my kids are a pain in the ass and really fantastic, so I don't even I wouldn't even know how to judge them that way. I'm sure they think the same on me. Probably like he's a pain in the ass.
Okay. So pumps, trading insulin, general craziness. How about health and outcomes? Is there goals back then? I mean, in the fur let's cut it into the first ten years.
The first ten years, is it just about staying alive, or are you trying to hit numbers?
I think it's more just trying to stay alive. My sister and I did not go on to a pump until we were a bit older when technology was a little more advanced. I think maybe we were 18. My brother to this day is not on an insulin pump. He still does multiple daily injections.
Mhmm. He has the CGM. But the first ten years, I think, were a lot of survival because I think trying to have the standard of keeping three type one diabetic children on your own in perfect control is just impossible. It's impossible with one child, let alone three.
No. I can't even I can't even imagine the the the the letdown you must feel in yourself as a parent when you look over and one of the kids has a blood sugar. You're like, okay. That's what I was shooting for, then the other one doesn't. And you probably feel like, oh, I let that one down.
And then you start doing the the thing in your head about the health and long term outcomes. And I don't your mom must have been out of her mind. I would've I might have been too. You know what I mean?
Yeah. I think I definitely would be because I have enough trouble, like, managing my own. I can't imagine having that kind of responsibility for somebody else's
Yeah.
Life, let alone your own, like, child.
For sure.
And then having multiple children, I just can't imagine how difficult it was. And it just it makes me realize how much of, like, a Wonder Woman she is.
Yeah. No kidding. Right? Well, do you have kids now?
Why She Hid It From Her Partner21:11
I don't.
Married?
I do have a partner. Yes. He I kept him very uninvolved for quite a while because I didn't want it to be a burden for him or anything he had to worry about.
Yeah.
Let me tell you, I don't think that's the way to go.
You should've let him in sooner?
Yeah. I think your partner definitely needs to have a certain amount of education around your diabetes because we've been in a few situations in the past where it was a little like, what do I do? Because I never taught him because I was so committed to not making it his problem. We've been together for nine years, so he's definitely learned a lot. That was probably, like, the first five years.
He's definitely starting to learn, and he does help me when I'm really, really burnt out or overwhelmed, you know, changing your pod at three in the morning or a sensor fail when you're out swimming. Or he does help me in those really stressful situations.
Well, I mean, imagine being in a in in a an emergent situation, you and your partner, and you're trying to help them. You don't have any idea of how to do that, and they're not able to tell you. But that must be a a feeling of lost and out of control that that's unmatched, honestly. Right? Like like if somebody yells, does anybody know CPR?
And you're the only one there, and you're like, nope. I don't. Sorry. You you know, and then somebody's standing there choking in front of you. Oh, my gosh.
So tell me a little more about why you kept it from him for a while. You you I mean, was it about I want this guy to like me, or I don't want him to feel like I'm a burden? Like, can you put words to any of that?
Yeah. It was really just I didn't want him to have to take on the mental load. It's, you know, the every hour, every minute disease. That's a lot to put on somebody else. And I was very committed to making sure that that wasn't going to be his problem or his worry or his issue.
And it really wasn't until the first scary low blood sugar where he didn't know, do I give her carbs? Do I give her insulin? That I was like, okay. So, actually, this is dangerous to our relationship, and it's time to do some educating.
Yeah.
So then we've really taken a different approach in the last five years, and he's learned a lot. Luckily, I'm pretty I'm pretty stable. Both my brother and sister are awfully brittle. I've never been in DKA. I've never had a low blood sugar seizure.
I've been very fortunate. Mhmm. So I kind of just thought I could keep pushing on that way, and there wouldn't be any problems. Do you do you have fooling myself.
You foolish. Yeah. You you you're not dodging this one forever. Like, you have to I don't know. I'm a proponent of just the people around you should know how to help you.
And not just a little bit, but really understand to their best of their ability. And I also don't have type one. I don't know what I'm talking about, really. Like, I'm just, you know, talking from an academic space. But, yeah, I mean, you do not wanna be in a situation one day where you really need help and the people around you who really wanna help you don't know how.
I mean, imagine if you if something dire happened and those people are now left with the idea that, oh, I was there and I couldn't I couldn't help. Yeah. It's it's I don't know. There's a lot to it, honestly. You should think everybody's gotta think of throwing their own and decide what they think.
But also, sometimes people have others around them that are not excited to help or maybe even good candidates to help, which can happen as well. But what I wanna understand is three different people, three same household growing up, you gotta make it through no Lantus at first, eventually get into pumps, insulin getting better, all that stuff. But the three of your cares probably don't end up blossoming the same way. Right? That's where it becomes pretty, I would guess specific to your personality, your drive, and your desire.
So how would you characterize your personal care versus your sisters versus your brothers?
So that actually kinda takes me into, a few things I kinda wanted to address, which, as you know, type one diabetes is not a, like, same situation for every type one diabetic. It's completely different in each person, and not one case is ever gonna be the same. And that even applies to, like, my sister and I as identical twins. You would think we would have similar scenarios, situations that our whole process would be similar, but it just wasn't. It was very different for both of us.
And I think that kind of goes back to, our birth, actually, because at the time, it wasn't a diagnosis, but we had something called TAPs, which is twin anemia polycythemic sequence. Big words. Wow.
TAPS: An Unequal Start26:04
I don't know what that means at all. Go ahead, please.
Yeah. Yeah. So pretty much what it means is that while we're being developed in the womb, our shared blood vessels became unequal. Where hers were much smaller than mine, and I was getting too much blood being polycythemic, and she wasn't getting enough being anemic.
Okay.
So your blood vessels in those situations as you're developing, they develop that way. So her blood vessels were developed small, narrow, and stiff. And as you know, type one diabetes is really hard on your vascular system. So she really just had double the challenges that maybe I did with more open and I almost had a safeguard in my in my vessels from scar tissue.
Because wait. So you had more than you needed, and she had less than she needed, basically?
Yeah. So it just, like, developed unequal
Yeah.
Where I was just getting too much blood, and it was thick like syrup, and she was just very anemic. What's the impact happens in twins.
It happens in twins. Don't let me stop you. It happens in twins.
So in '93, when we were born, haps they didn't know about haps until 2007, but they knew about twin to twin transfusion syndrome, which is kind of similar, but it's more acute. Big vessels transfer fluid and blood from one twin to the other, but it happens pretty rapidly. Where TAPS is more chronic, it happens early on, and it goes on throughout the pregnancy, and you develop that way. Mhmm. So they thought at the time that we might have had the twin to twin transfusion.
We didn't meet all the criteria, so we were never formally diagnosed. And then later, when they discovered taps, we met each criteria for the taps.
Jeez. And is there anything that they were able to do for either of you?
So I was very sick. My blood was too thick. It's really hard on your heart and your lungs. So immediately, I was my heart stopped pretty quick. They did.
A little CPR came back very quickly, and they put me on a ventilator. They tried traditional medications to help with my lung product like, getting my lungs to function, and that didn't work. And they pretty much were like, you know, it's in God's hands at this point. But they tried an experimental treatment for the lungs, and that did work. So I was on the ventilator, I think, for about six days.
They didn't move or touch me for the first two weeks because when they would touch me, my blood pressure would skyrocket, which is dangerous when you have thick blood. They were still doing the blood transfusions.
Oh, wow. So You just laid there?
Yeah. Yep. For about two weeks, and then they fed me for the first time, I think, at at that two week period.
Gosh.
What So for the
Can I I'm gonna stop you for half a second? You and your mom ever talk about this as adults?
We actually just recently did. Some of this is rather new, information that just wasn't out there in '93.
Yeah.
They're still kind of figuring out long term effects on pap's babies and the, like, lifelong effects that that has on on someone.
Mhmm. Brain injury, stuff like that can come. Right?
Yes. Is it So slow processing time. They're finding there's a link with caps to ADHD and organ. You can have issues with your organs, especially in the anemic twin
k.
Who had the lack of oxygen in their blood
Right.
Can cause long term deafness. There's there's a few long term issues. We didn't present with all of those, but it definitely structurally rebuilt our vascular systems very different.
Her Sister's Harder Road30:55
And then describe to me if you can, growing up through life, the issues that your sister had, any that you might have had.
So we were both diagnosed with hypothyroidism when we were, like, nine. We were pretty young. And then just anytime my sister got sick, she got very sick. And we'd both get sick at the same time. I would bounce back much quicker.
I just overall had a stronger immune system.
Mhmm.
And then into her teenage years, there were just these body aches and flare ups, and she'd get a virus, and it would be almost deadly to her as viruses are with type ones. They're scary. But everything affected her much heavier than it affected my brother and I. And that going into our early twenties, stuff started to get really kinda scary for her with her her blood vessels. She just had very poor circulation, which that combined with type one diabetes is a scary combo.
Yeah. Yeah.
She had sepsis three times. She had three strokes. She just really went through the ringer.
Three strokes from just the the limited blood flow, and do do do they know why?
One of them was from a clot, like, a scab. So she had a fall, and she hit her head and damaged some of the vessels. I guess they scab over. That scab can release and then cause a clot in the brain.
Jeez.
So I think that was her third stroke was from that. And I'm not completely sure what the first two what the first two were from.
Mhmm. In that time, into your early twenties, what would you say your diabetes outcomes were like? Do you know what your a one c's were or what you know, how you treated your blood sugars? Can you talk about that a little bit?
Yeah. So by the time well, our teenage years were a disaster. You know? You're going to high school and you are getting out of high school, and you wanna do what your friends are doing. You wanna eat what your friends are eating.
You don't wanna pull out syringes at the dinner table or when you're hanging out and you know? So our a one c's were garbage as teenagers. Into our early twenties was when we both were on insulin pumps and things got drastically better. I think my a one c was a 7.5, and hers was about a seven. So they were they were pretty decently controlled at the time.
On the pumps?
On the pumps.
You have any idea what a number would have been prior to that during garbage time?
Oh, 11.
Okay.
Yeah. They were garbage.
What? You were shooting were you regular on Miles per hour at that point? Did you go regular on Miles per hour to pumping?
No. We went from regular Miles hour. We did Lantus and Humalog, and then went on the pump about eighteen.
Okay. So even during Lantus and Humalog, what were you doing? Shooting the Lantus, but not shooting for meals all the time?
It was actually kinda the opposite Okay. Where the thing we would forget the most was the Lantus. And then we were in those kind of situations where somebody was out of Lantus and needed it, and we couldn't get it. And somebody had to, like, go to an ER or trying to get ahold of an endo in the middle of the night to see where we can find a twenty four hour pharmacy to get a prescription.
Cassie, is that is that a financial issue or just not somebody not handling ordering supplies correctly?
I think it's a bit of both. So my parents owned their own business. We didn't fall into the same kind of, like, medical insurance where you're on it until you're 26. So then at 18, I don't think any of us had medical coverage at 18. So there's a lot of programs out there where you could get a month's worth of insulin for $60 or but with three of us and my mom trying to find all these programs that can make it affordable until we could figure out, our next best step, which I don't know the nuances of it all.
No. Would you describe for me what the financial situation in the house? Would you have called yourself poor, working class, middle class, upper middle class? What do you what were you?
Middle class. I I would say, you know, I don't not so sure the classes really exist anymore. But
No. There's just two now. Yeah. But go ahead.
There was a lot of times where it was, like, money was doing really well. Mhmm. And then there were times where money was doing really bad.
Little feast investment kind of thing going on. Like, the business would do great. We'd do a little better. We're going on vacation. Everybody's eating, that kind of stuff, and then it goes the other way?
Yeah. Exactly.
What kind of business? Like, not the name of it, but, like, what kind of work?
They do, like, audits and pre OSHA inspections for, like, construction sites and schools, that kind of thing.
Okay. And do do your parents oh, your dad's alive still or your mom? I know your mom is.
Yeah. They're both alive. I'm pretty estranged, like, from my from my dad. We don't have much of a a relationship just from stuff growing up. But they still own the business together and run the business together.
My brother's also working there.
They're married still?
Wanna work with family. No. They're not.
They're not married. They run the business together. Yeah. Wow. That must be fun.
Oh, yeah. A lot of fun.
You you you But and now listen. I can't imagine that if you're estranged from your father, I can't imagine your mom is okay with your dad. Is that right?
I think she sticks around for my brother.
Her Brother's Addiction, and Prison Diabetes37:23
For your brother. And there's a part about your brother that we haven't talked about yet. Right? Is he he has he struggled in other ways?
Yeah. He struggled with addiction for quite a few years. He'd have these time periods where he'd be clean for six years, like, in between, and you kinda get that feeling like, okay. Everything's gonna be okay. Mhmm.
Like, everything's okay now. And then his last stint of addiction, he did end up going into a correctional facility. He was charged for drug trafficking and possession of drugs, and his care in there was just it was just awful.
Yeah. I've only interviewed a couple of people who have been in prison with type one, but it doesn't seem like it's set up for success. That's for sure.
No. They checked his blood sugar twice a day, 7AM, 04:30 in the afternoon. They'd give him insulin before they knew what he was gonna be eating. So there was no carb ratio put into place. They were still doing Humulin and Humulin r, which everybody knows is very old school.
It might keep you alive. It's not gonna prevent complications. And he developed retinopathy, neuropathy. He had five or six different low blood sugar seizures.
Yes.
He had to provide his own low blood sugar treatment from his commissary.
Oh, they didn't they didn't see that as medication?
Apparently not because they wouldn't give him glucose gel because of the high sugar content. They were afraid people were gonna use it to make alcohol.
Oh, I guess there is a different set of concerns in prison. Am I so your parents are running this business to give your brother a place to work and to help themselves financially. Is that right?
I think they started it together, and they both just love it. Like, it's their baby.
I see.
They both grew it from the ground up. It's been what they raised us doing and what they bought their house doing. And I think it just meant so much to both of them
They wanna lose it.
That neither one of them could walk away. But now that my brother is so heavily invested in the business, I think my mom's a little hesitant to walk away as long as he's still there.
It's providing stability for him.
Yeah. A support system, I suppose. Mhmm. Hard question. It's tricky.
Yeah. Yeah. Hard question for you. Okay? Your sister's really sick most of her life.
She's a lot I mean, a lot of issues and passes away. You all three have type one. Your brother had addiction issues. Do do you have any idea what was it the stress of all that that broke your parents up, or do you think it was something else or a mixture?
I think it could be a combination, but I think a lot of the issues were going on before the the diet.
Yeah. I didn't mean that they were the Brady Bunch, then you guys got diabetes. That that's not what I was saying. But but I but you think is it a I don't know how to ask this. Like, do you think that the the thing hey.
There's no way for you to answer this question. I don't know why I'm asking you, but I'm gonna finish it now because I started. Their collection of issues without three kids with health issues, do you think they would have been okay?
No. I don't.
No. They were they were on their way about it.
Their outcome probably would have been about the same with us in the picture or us not in the picture. They were just other things going on that I think made their separation a little bit unavoidable.
Gotcha. I heard I heard what you said. I think I know. I'm not gonna guess out loud, I think I got it. Sorry.
No. That's okay.
No. I mean, I I grew up in a shaky household too, so I I'm sorry for you. My god.
I know. I'm trying to tiptoe because I don't wanna hurt anybody's feelings.
Of course. No. You're doing a good job.
At the end of the day, you know what? This isn't really about them. This is about me sharing my story.
So Yeah. It's your life. You know? They were they made themselves characters, and the the kinds of characters that they were, they could've they could've made themselves different characters. You know?
We all could. We could all do that. Wow. Okay. So when you go to a pump and your a one c comes down to the sevens, do you and you're in your early twenties.
Are you in college? Are you working? Where are you at in your life?
Oh, I started the pump at 18, and, actually, they would not put me on the pump until my a one c was a seven. They said if I couldn't get my my shit together or under control, that a pump wasn't gonna make the difference. They wanted to see I could do the work first, which now makes absolutely no sense to me.
I come down on the side of that's wrong, but go ahead. Yeah.
But this was the older generation of endos, very scare tactic oriented, you know, would come in with a picture of, like, somebody with a missing foot or a a eye and be like, know, do you want this to happen to you? Mhmm. The old generation of endos were a little harsh. Glad that there's been a big shift in that and a big change, but I did I did the work. I really went to work with the multiple daily injections at 18 and got onto the pump, and it just made a world of of difference.
My sister very shortly went on to the pump right after me. So then we both were in pretty good condition with our diabetes at the time. I was in training to be an EMT. I was doing trades at the time. Mhmm.
Never felt like college was gonna be a good fit for for me because I struggled a bit in high school.
Mhmm.
So then I was like, you know what? Let's give trades a try. So that's what I was doing at the time. My sister was very sick at the time. She was working part time at a greenhouse.
She loved plants. She loved plants. She loved gardening. That was, like, her whole life, being in the sun. So that's kinda where we were Yeah.
About that point.
Getting Serious — and Every Pump There Is43:50
What made you serious about it? Like, why like, how could you if someone if you say, I'm gonna get a pump, and they go, no. You're not getting a pump until you lower your a one c by four points. What makes you what makes you do it? Like, how did you accomplish that?
You know what I mean? Like, something had to change in you that make you wanna do that. Right?
I think I was moving out of I was kinda moving a little bit more into adulthood, and everything gets more serious. And they're like, oh, this isn't, like, a game anymore. Like, it's hard to be afraid of long term complications because you're not seeing them in the moment. Mhmm. But I just got so tired of feeling bad.
Okay.
And feeling bad became so normal. And then I was struggling to go to my classes, and I was struggling to do the physical part of my trades with lifting people and things like that. And I was like, I'm just kinda I don't wanna feel like this forever. And it just made me get a little more serious about it.
Yeah. I guess I don't wanna be trod, but you were sick and tired of being sick and tired?
Yeah. Exactly.
That's where that saying comes from. Okay. And so you buckled down, did what they made you do, got the pump, life got better, etcetera, so on?
Yeah. My diabetes has been pretty well controlled, like, since moving to a pump, and, man, have I tried all the pumps. I'm on the Omnipod now. Love it. It's been my favorite.
My a one my last a one c was a 6.5.
Good for you.
It's never been under a seven with any other
You're on me pumps. You're on the pod five?
Yeah.
Have you gotten the update yet for the 100 target?
I did, and I just did the update yesterday. Oh. And then I wasn't quite sure what to do from there.
Set your target to 100.
Okay. I was just like, does it just do it automatically? And then Hello.
It's thing. Thing. Are you doing it? Are you doing it, thing? No.
Go into
your go into your settings
and make your target 100. Why doesn't the thing know, Cassie? I mean, come on.
No. I told you. I'm challenged with technology.
I mean You you Cassie, had something happen when we were setting up. Let me tell them real quick. So when I'm trying to figure out like, sometimes people you know, it's very nice to people to come on here and do that do this, but, like, I don't exactly attract a crowd of people who are always making podcasts and stuff. So they cobble together, you know, microphones or headphones or whatever. And when I'm trying to see if they've properly turned their mic on that they're wearing or is, like, you know, their laptop mic being used, I'll often say cover the microphone with your hand because Cassie's voice was really dim and low.
And she covers the microphone with her hand, and her and her voice gets louder. And I'm like, wait. What what's happening? And she's like, I'm challenged. But but, no, seriously, like, yeah, move your do you know where your target is now?
Yeah. I think my target is One the one yeah.
Okay. Make it a 100. I'm I hear from people who are using it that it's a it's a it's not just the target that they changed. Some other stuff got changed too, And people are seeing a real difference, so give it a whirl.
I'm definitely going to. I was, like, trying to gather notes for for today so I didn't come in here and talk about, you know, my own stuff and sound like an idiot talking about my own stuff. And I was like, that seems like tomorrow's issue.
Isn't it? Isn't it hilarious?
Do that tomorrow.
You say to somebody, like, what's your basal rate? They go, I I don't know. I'm like, well, if you don't know, who knows? Right. Yeah.
No. But seriously, I would also, let me say, not medical advice. I'm just saying I would move it if I was you. And while we're dropping in disclaimers and links, omnipod.com/juicebox to learn more about the Omnipod five. Please support the sponsors.
Links in the show notes. Links @juiceboxpodcast.com. Okay. Now, Cassie, we'll move forward. Yeah.
Part of the thing we talked about earlier, I have to I will I will say this. I don't I'm gonna use the word hate for a second. I don't hate that there are great companies that support the podcast. That that's fantastic. I wish that it wasn't part of my life to have to remind you all that if you don't use those links, if you don't download the show, if you blah blah blah, then I can't keep it going.
And it because it sounds like crap. I know it does. Like, I because I've heard people who make YouTube videos, podcasts, etcetera, they say the same thing. When they're saying it, my knee jerk reaction is, oh, shut up. Like, leave me alone.
Like, that's not gonna make your podcast fault. It will. Like, it absolutely will. But it's a hard thing to hear from a listener position, I think, because I don't have a good reaction to it. And yet I find myself saying it, which is I don't know if that's an oxymoron or not, but I feel like a moron when I'm doing it.
I can tell you that much. Okay. So we'll get your we'll get your goal down your target down to 100 and the Omnipod five. You said on the other pumps, were never able to get under a seven?
Yeah. I would say the closest I got was exactly a seven, and that was with the t slim. And I really thought for a while that technology couldn't get better than the t slim IQ control closed loop system Mhmm. Because it was so life changing to me. I went on the the t slim after I was on the Medtronic, you know, with the Guardian sensor.
Yeah.
I hated the Medtronic.
You did it all. I
did. I started on Animus, and then went to Medtronic, then went to the t slim, and then I tried that new pump, the the bionic pancreas Did you really? On that.
The beta the islet?
The islet, and that tanked my timing range. I went from 80% down to 55% on that one with
the six that for? Six months.
I gave it a year. A year? But after a year, I just, like, finally told my endo, like, I can't I can't do this. Like, it's not working. And he was able to write to my insurance to be like, yeah.
The warranty thing. Like
Yeah. We'd like to switch back, please. That's crazy. Yeah. Well, they're not sponsored, so I'm okay with that.
No. I mean, I'm just joking. I I think sorry. No. Don't be sorry.
I think that first of all, I think that all of the of the pumps that are are represented here on the podcast by by ads, they weren't they weren't just taken because they weren't interested in making ads. I think they're all very good pumps, and and I believe they do a good job for people. I do wonder just Yeah.
Finding the one that works for you.
Yeah. What works for you I would also guess too that your knowledge of diabetes has gotten better over time. Like, I would Yeah. I hope so. Yeah.
Right? Like, so have you been listening to podcast for long?
I started listening to your podcast, god, probably about a year ago. It hasn't been been crazy long. I know you've been doing this for a while.
Mhmm.
I listened to one not that long ago. That was from 2018.
Oh, I've been doing this for twelve years. The this, I guess, started
in long time.
2015. Did it start in 2015? Yeah. In January. But my point being, is it possible that over like, watch.
How long you've been using Omnipod five?
I've been on the Omnipod five for only about eight months, I think.
Is there an argument to be made that the podcast is the reason you're doing better? I don't wanna take anything from Omnipod. But is
The Podcast as a Support System51:42
there No. I I do think that because not only did I keep hearing people talk about the Omnipod five, I found people who learned how to use the Omnipod five through your podcast.
Okay.
And then I one of my best friends is also a type one diabetic. She lives in Florida, and she's been on the Omnipod for years. And for so many years, she kept telling me to do it, but I was so attached to my t slim.
Mhmm.
It was like, nothing's gonna get better than the t slim. And then finally, I gave it a go and was like, this is the best pump I've been on. I've been on them all.
Awesome. I'm gonna go out on a limb here and say something I don't have any idea if I'm right about or not. But I bet you if today Cassie wore the t slim pump, she'd have a six and a half a one c. And I bet you if today Cassie went and wore the seven eighty g from Medtronic or is it MiniMed or Medtronic? I mean, you guys you got.
If you go wear the MiniMed seven eighty g, I bet you'd have a six and a half a one c. I bet you're just better at it now. I would also argue that people who listen with some consistency stay stay engaged with their diabetes without feeling focused on it. That's the that's how I hear back from a lot of adults. When I listen, I just do better.
I couldn't possibly tell you why. But I also don't find myself thinking about it more. I find myself thinking about it less, but doing more. I don't know if any of that, like, resonates with you. But
No. It it does. I think in the last year, something that I was always a little bit, like, you know, it's not that important was pre bolus. Like, I used to always kind of bolus be like, oh, yeah. I'm gonna eat in, like, three minutes, and I would bolus then.
And now I really make sure to take the time to do it twenty minutes or fifteen minutes ahead of time, and it it really just made a world of difference.
Yeah. And that's from the the podcast.
Yeah.
Alright. I don't wanna break Omnipod's heart, but, obviously, I'm the one that fixed this.
Clearly. Scott gets the credit here.
I mean, really, it was me. I get you. Also, now I realize when people say that I'm direct and that they find my confidence unsettling, I now know what they're talking about. But I don't see it I don't see it that way. What I see is that, like, very simply put, I've, in the past, tried to lose weight by myself, and I've tried to lose weight with support.
And with support, it goes better. And I've also tried to lose weight with support and assistance from technology, and what do you know? That even works better. So my point is that the podcast is a support system for you.
And it's Absolutely.
And you get dribs and drabs of information or ideas or concepts. You start applying them without even maybe believing even knowing that you are so much so that when a year later comes and you say, hey. What's going on? Why is your a one c a six and a go, let's say, Omnipod five. And and I'm telling you that I think those algorithms are all great.
Metronicdiabetes.com/juiceboxtandem oh, wait. Metronicdie yeah. And tandemdiabetes.com/juicebox omnipod.com. Just like That they're all they go find the one do. Go find the one you like the best, but know how to use it.
That's where the real success is gonna come from.
You gotta be honest about the Guardian, though. The Guardian sense
Oh, that old center.
Yeah. Well, there's a reason they got rid of it. They they don't make that anymore, do they?
It was pretty awful. I don't know. I, like, I don't know why they had so quick and never looked back.
No. So yeah. I mean, listen. I think I believe that the CEO of the company was on here and said that we called it the and when I said people call it the harpoon, she was like, yeah. Yeah.
Yeah. But I don't think anybody's saying otherwise. I will tell you you've never heard the harpoon? No. Okay.
Cassie, I would also tell you this. And I mean this, and I've been saying this for years. Anybody can look back and hear me say this because I'd make fun of Metronic because the thing was a harpoon. But they went first, and you gotta respect that. They made a CGM.
You know what I mean? And Mhmm. The insertion process was not great. And even the usability, you know, where you're, like, having to, what, you had to always put in the blood sugar and stuff like, it's not great. But it got everything going.
And now here we are, what, three plus Libre, g seven fifteen day, the Simplera Sync is the one that Medtronic has now and the other they have another one too. Right? Medtronic actually has two options now. The Instinct sensor, it's a fifteen day sensor. It's Simplera Sync that works with the MiniMed seven eighty g.
And now Eversense has their implantable CGM. Like, you know, respected Medtronic for going first. You don't first to the door is the one that gets shot. You ever heard that one? So
So I think, like, the closed loop system is really what changed the game. The closed loop system really, I think, is what came in, like, made life so much so much easier. Sure. I don't know much about the implant or if the implant works with the closed loop system yet. I like the idea of the implant.
It does scare me a little bit.
But you're But you're intrigued?
Of it. But I'm intrigued by it. Yeah. I definitely wanna learn more about that, and I have a little bit. I've also learned a little more into I've heard a lot about the twist.
Yeah. Twist Twist loop.
Months ago, I didn't know anything about.
And you love jumping around bombs, so it won't be long for you.
I know. I don't know. I'm pretty committed now. I love not having a tube.
I I listen. I I think that tubeless is a great option. A lot of people really like it. It's not a you know, but there is other companies making other stuff. You're gonna see a lot of things happen.
Also, I don't wanna seem like a show, but twist.com/juicebox has two eyes.
I walked you right into it. Oh, thank you, Cassie. I appreciate it. But I think
You want the same thing nice about Dexcom, US Med? Or the contour next gen?
You know, I've always wanted to try the fifteen day Dexcom. I haven't tried that
yet. Dexcom.com/juicebox. You're so funny.
Yeah. I think .com/juicebox.
Oh my god. You but listen.
What else can I throw?
I'm trying to joke around here, but I hope those of you who listened to me earlier look into this. Like, this is what it takes to keep this going. Like so if you're like, hey. The podcast is great. It's a like, listen.
You know what I mean? Like, it's a it's a ton of work and it's a ton of, like you have just you just have no idea. Like, I know it's easy to, like, flip on YouTube and be like, oh, look at that guy. He's probably making money or whatever doing this thing. It's a slog, man.
I mean, it's not it's not I used to work in a sheet metal shop. I'll do this any day of the week. Okay? It's fine. But the pressure to keep it going and the orbit around it that supports it and makes it possible for me to, you know?
I mean, you you have no idea about my day yesterday, but I will just tell you that I had to I had to start editing the podcast yester this week on my own again. And I've been head down at my desk eighteen hours a day or twice five days in
How's your neck feeling?
It's not. I actually walked downstairs with my wife, and I was like, my back is so sore. Why is my back so sore? My back hasn't been sore forever. I started complaining.
I was like, since I've lost weight, my back hasn't hurt my back right now. She's like, you've been sitting in that room for four days. And I was like, oh, oh, okay. So it's just, you know, I don't get outside. I actually had a moment.
I did a thing for myself yesterday. I I spent a couple of hours in the morning doing something I had to be in my car for, And this it was beautiful. The sun was out, wasn't humid, and I was, like, out in the world at, like, 8AM, and I thought, I haven't been outside at 8AM in forever. Like, this is this is nice, you know. I was like, anyway, I'm we're not here to complain about my life.
My life's fine. Point being, support the sponsors. And the pumps nowadays are all pretty great, and I think the next step is your understanding of how to use insulin, how the food is impacting your system, how did you make changes to your settings when you need changes to your settings. That's pretty much it.
Yeah. Well, it's a lot. It's just so much to learn and but, you know, it it's amazing how quick things are changing.
Oh, yeah.
Just I feel like every day, I'm reading something and I'm like, oh, that's amazing. Like, I was just reading about what's his name? Alec Alexander the tennis player?
Yeah. Yeah. Yeah. He won the US Open
the first yeah. He just became the first grand slam single title holder as a type one, like, breaking out there breaking records.
Yeah.
A lot of people on your podcast are out there doing really incredible things. Yeah. A few I was reading about or listening to, like, in the mountains, snowboarding, and just really out there doing incredible things that I'm not sure would be possible without a lot of the new technology.
Do you know a type one pilot's the space station, the International Space Station?
I did not know that.
Yep. She's been on here. She's very cool too. Her name's April. And, yeah.
Breaking records all over for type ones, and the technology really kinda makes that possible.
You watch baseball?
For us. I don't recently. I used to be really into baseball.
The, the closer for the Padres. Mason Miller? I think he throws, like, a 102 miles an hour or something like that. He's type one.
Yeah. Look at that. Like, just doing what other people can do. And I know there's some nuances to it with others who also have other autoimmune disorders. Yeah.
Makes it, you know, a little more
Challenging for some. Hey. Listen. My daughter's going to college with it. You
know? Yeah.
Her friend is in college. She has type one. They Arden has two friends in college with type one. And college isn't easy. And diabetes isn't easy and each makes the other thing more of a challenge and people are out there doing doesn't always have to be like I throw a baseball, you know, a 100 miles an hour or I, you know, I fly a space station.
I think it's, you know, a wide range of people who are out there just living life and doing a great job and, you know, trying to do better for themselves and while these technology companies are getting better. But your point about things getting better faster, I think that's incredibly exciting about around what kind of technology is gonna pop up. And and even so, the technology doesn't have to be the way we used to think about it, which is like, you know, you have to make a new thing. That's technology. Now the technology lives inside of the thing.
And that's much easier to update and improve and get out into people's hands. So I'm I'm expecting I'm expecting I'm expecting all the companies to keep going. Right? MiniMed, I think they're gonna make improvements to their thing. Twist, I would hope would bring out another version of the Twist loop, which I would imagine they're trying to do.
Omnipod six, I've already heard people talking about. Control IQ, they just got FDA approval for pregnancy. You know, on and on and on. That Senseonics, the Eversense CGM, the implantable CGM. You know, when it came out, it could be in for, I don't know, three months, then it was six months.
Now it's a year. Like, woo hoo. You know what I mean? Like, let's go. And that that stuff happened in much quicker much more quickly than I've ever seen in the past around diabetes technology.
Scared Straight: Living for Both of Them1:03:21
It's crazy to think where we're gonna be at in a year. I do kinda wish I could have seen how much this new technology would have impacted some of my sister's health issues. I know, like, her passing really kinda scared me straight as well. It was really like, okay. Major life changes need to happen.
How? What what what adjustments did you make?
I just started eating a very solid regular, like, diet. I stopped going through my weeks like, oh, what am I gonna eat for breakfast? I'm just figuring it out then. I started planning ahead of time my entire week of what I'm gonna eat for breakfast, lunch, dinner. I know exactly how many carbs I'm gonna get at those times throughout the week.
It keeps it consistent. It's helped me greatly. I've just started getting more physical exercise, getting out into the sun more, concentrating on the basics that people forget about, like diet, sleep, water, sunshine, that all make a major impact on our lives that we kinda push to the side. Like, oh, it's not that big a deal, but they're our baseline for functioning. And I quit I quit drinking soda, which I did only drink diet, but it's like, you know, I'll let myself here and there, but not every day like I used to.
Mhmm. And it just really got me into doctor's appointments more frequently and keeping an eye on things because there's always this baseline of, like, we're identical. What happened to her could happen to me. And things pop up where I'm like, she went through this, so it's happening. Yeah.
Like, it's starting to happen. I just had a real scary event with my with my kidneys where every time I get my kidney function checked, it's my worst fear to open it, and it'd be, you know, below that 60. And just recently, I kinda went through that, and I opened it, and it was 30 because I was on an antibiotic called Bactrim, which in some people can cause their kidneys not to filter protein or not protein, potassium. So then my potassium levels were really high, and they told me, like, go to the emergency room right now. And I was like, this is it.
It is it's happening. Like, this is how it started for her, and now it's happening to me.
Mhmm.
And this was just three weeks ago.
Cheers.
Within three days of coming off the medication, of coming off the Bactrim, my kidney function is completely normal again. All my levels were completely normal. It's just crazy. One time didn't
forget pause. You didn't forget the fear of it, though?
I didn't forget the fear, and the entire experience was a little triggering, and I would even say maybe a little traumatic. I think medical trauma goes a little unseen.
Oh, yeah. You start feeling like you're gonna Yeah.
Yeah. And there's just this constant reminder that I share an identical DNA with somebody that had a bad outcome. So it makes the everyday life a little bit different.
Can I tell you something that I found really encouraging about that little bit of your story? Is that I so often hear people say that they're doing things for other people, but I heard you say I'm doing this for me. And I thought that was awesome. Like, I really did. Like, I when you started talking, I was gonna ask you a question.
I was gonna say, do you think that you're doing it because you wanna be healthier, or you think you're doing it because your sister can't do it for herself anymore? But as you kept talking, I thought, no. Cassie's doing this for herself. Like, she's trying to pull her her stuff together. Good for you.
A little bit of both. Yeah. Because I feel the responsibility a little bit of living for for both of us. Mhmm. There is this whole trying to figure out how to be a me when I've been a we our entire life.
That's been very, very difficult. It's a very lonely process. It's a very unique situation to be in that there's not a lot of support for. Yeah. And nobody really understands unless you are an identical twin.
So now I have this strange tether where it's like half of me is wherever she is, and the other half is here. And that tether almost kept me stuck in one place for a little while. Still does a little bit. And now I'm kinda like, I have to do what she didn't get to do. I have to, like, live long enough and be healthy enough, not just for me, but for both of us.
Because moving forward as her other half, whatever I'm doing, she's doing.
Yeah. Death is an abstract until you experience a it's just a thing that you no one really I mean, we know we're going to die, but we don't think we're going to die. Do you know what I mean? Like, you do not walk around thinking like, oh, life's gonna end. And then someone's life ends, it it's impactful.
But when that person is your sister and looks just like you and shares, like you said, your DNA, boy, I'll I'm if this didn't do it to you, you called it scared straight. But if it didn't do it to you, then nothing was going to. Because, I mean, I can't Exactly. Oh, I can't imagine anything more impactful than this, honestly.
It has this strange bittersweet, like, thing to it where it's like, the worst possible thing that could have happened to me already happened.
Mhmm.
So it definitely pushes me forward with a little less fear and a little less anxiety on that aspect of it. There's also this aspect of getting to know myself in a way that I never had the opportunity to.
Yeah.
I never got to know myself as an individual, which
Interesting.
If I, you know, could go back and choose, I absolutely wouldn't. But that's been an interesting an interesting journey
Yeah.
Of really trying to get to know who I am as just me when it's always been us. And I miss it more than anything. I miss her more than anything. She was my best friend in the entire world. We shared so much.
When you grow up with someone the same age as you, literally from day one, you share the same kind of you learn empathy very young. You start to understand feelings very young as you're bouncing it kind of back and forth with somebody who's the closest person in the world to you.
Mhmm.
I don't know if the twin thing, like, really exists, but I know her and I definitely had a shared empathy where I could understand her and understand what she needed. We didn't always have to talk about it.
Yeah. I'm interested too in how you're able to accept the gifts that come from her passing without I don't know. I really don't know. Like, it's it's tough the gifts are coming from such a tragedy, but it would be easy to just, I don't know, not pick them up because it felt wrong to take them, but you're you're taking them, which to me says they're not being wasted because there are things you're getting out of of her not being here any longer. And instead of ignoring them because it's uncomfortable, you're you really are paying attention to them.
Therapy, Scott. Therapy? Gotcha.
Therapy helps a lot. But, yeah, it it does seem like a waste because it's, like, ignoring anything positive that could have come from that, I think, would be ignoring an entire part of her almost that was lost in all of this.
Cassie, you're you're in your thirties. You're in your thirties, Cassie. Let me put this into terms that people your age can understand. Black Widow gave her life so Hawkeye could go back to his family. He's got right?
Okay. He's gotta go do that now, or what she did is wasted.
Exactly.
Yeah. That's all. Everything see a Marvel movie. I fixed it for you with what was that? Endgame?
I don't remember exactly.
It was Endgame.
It wasn't? Oh my god. Apparently, I do remember, and I knew you would know because of your age, by the way. Those movies were so good. Not good like, you know, War and Peace good, but they were good.
They were good.
Yeah. Yeah. Yeah. Any and, anyway, how much therapy did it take for you to accept that?
Denial, Therapy, and Starting to Face It1:12:03
So I spent quite a few years kind of in denial a little bit. Mhmm. Kind of in this state of disassociating where I was rather manic. I was drinking a lot. I was partying a lot.
I was going out and just kinda being crazy. And I was completely disassociating from the experience, and I was kind of not even thinking about therapy. And then I had a moment in I wanna say it was 2022. It was the summer of twenty twenty two where I kind of looked back at this trail of destruction I was causing from dissociating from what was really going on. Just people around me that I was hurting with my actions or my words without even realizing it because I wasn't fully here.
And it scare being that way scared me so much that I immediately got a therapist. I immediately got a psychiatrist. And at first, they thought I might have been bipolar or and it was really just trauma. It was really just disassociating from this experience that I couldn't even imagine beginning to deal with. And I honestly haven't started to until until maybe six months ago is when I've really been able to start talking about it and focusing on it in in my therapy and really starting to kind of accept where I'm at and the fact that she's not necessarily here with me.
She is, but she, you know, she isn't. Yeah. And I couldn't face that. For a lot of years, I couldn't face it.
I can't imagine, honestly. It it's the that you're having an incredibly unique experience. You know? Well
It's unique, and there's not a lot of there's not a lot of resources for it, which is why I felt that it was kind of important for me to find a platform.
Yeah. I was gonna say that's what led you here to do this. Right?
Yeah. To not only talk about the the diabetes and the health issues, but to bring a little of awareness to twin loss because it is complicated.
Well, I mean, I looked into taps a little bit while you were talking, and it I mean, it's not a thing that affects a lot of people. You you know what I mean? Like, so when when you're having something that unique happening to you, the support system around it is gonna be, I mean, shaky, you would imagine, you know? And then moving forward, living as a twin is not a thing that, you know, a lot of people, you know, have experience with losing a twin is even less so. Having medical issues prior to that, sharing the medical issues, some of the medical issues, you are in an incredibly unique situation.
You did a really good job for yourself getting out of this.
I've done the best I could. There's been the TAP stuff has been rather rather recent that explained a lot of unanswered questions.
Mhmm. Is it important to get those explanations?
You know, I I do think I'm gonna have some closure with it because for the last five years, we're kinda like, why did this happen? Like, why did her kidneys fail? Because they biopsied the kidneys and said it was not diabetes related. And they diagnosed her with lupus along the way. They never really thought that was what was causing the vascular issues, and they just never really figured out what was going on.
Ultimately, she got an infection, got sepsis from that infection, which sepsis has a forty percent mortality rate. So that's kind of what what happened there. And it was during COVID, so they weren't letting anyone into the hospital. There was two weeks, which is the longest we've ever gone without talking or seeing each other, where they weren't letting me in to the hospital to be with her. And then by the time I did, she was in a coma, and I never got a chance to talk to her.
But they pretty much told us there's there's nothing we can do, and you guys need to decide if you're gonna take her off life support or keep her, you know, in the state where she'll probably die anyways because nobody's gonna operate on her in the state she's in.
Saying Goodbye1:16:14
Or a situation.
It was a very unanimous decision between her husband, myself, and my mother. And I laid with her, and I held her when they took her off. And it sorry. It's the first
Oh, you're gonna
make me time I'm about this.
Starting to cry. Just keep going. You're fine.
And I felt the I felt the energy leave, and I knew. Yeah. I knew when she wasn't there anymore. And then there was this sense of guilt that I had for not only still being the one here, but why this happened to her and not me, and then looking at the caps and being the receiver, being the one that, like, took all of the blood and took all of the there was a certain amount of guilt that has come with that that I haven't quite worked through yet.
I have to tell you. When I was reading about the Taps, I thought whoever named these arms of this really wasn't thinking about the human side of it. Like, why would you why would you couch that this way? Do you know what I mean? Like, the receiver is Yeah.
Yeah. Yeah. Yeah. No. I hear you.
I hate that word because multiple reasons. Growing up, my grandma was always like, you know, Cassie, since birth, you've always been the fatter twin. And things like that and it's true. All the way through our relationship, I've always, like, weighed more than her and whatnot, but it just stemmed from that. Like Yeah.
Stemmed from the difference in her size at birth and her health conditions along the way that there was nothing they could have done than any ways to have changed the outcome. What's also
even saying you. Like, right, like, you took, you were fatter, you were it's not like a conscience it's not like it's not like they came and found the zygote, and they're like, hey. Would one of you like to take and one of you, like, get taken from? And you were like, yeah. Me.
I'll do it. Like, you know what I mean? It's not really you. It's just the it it I don't know. It's got nothing to do with you.
It
it It doesn't. Yeah. Rationally and logically, I know that. I know I made no decisions in any of this and that none of it was my fault. Mhmm.
I think that one's just gonna take a little more a little more time, especially because I am just kind of recently starting to work through some of this. And it being just, you know, a couple days away, you kind of your body knows even if you don't.
Yeah. Like You're
kinda like, what's wrong with me right now? Why am I acting weird? Why am I so tired and depressed and whatnot? And then you're like, but it doesn't have anything to do with that. So it's like, there's still a part of me that can be in real denial about it all.
Yeah. You're not drinking anymore, are you?
No. Good for you. Occasionally, the weekends, but never more than one or two. And I'm looking into taking LDN, the low dose naltrexone for base level inflammation. So there's no drinking with that I mean is fine.
Like a perfect person to go to Hopkins and ask about that MDMA therapy.
I think I would be really about that.
Yeah. You would think that they'd be like, wait.
Let's just enjoy that.
What's that story? Yay. You're in. Let's go.
You have both. Make me feel happy? Okay.
I don't know. They say it just make makes your trauma melt away. I don't know. So I don't know if that's true or not, but it's what it's what everybody's saying. I can't thank you enough for sharing this with me.
I've I've struggled with what to call the episode. For a minute, I thought I wanted to call it tired of sick and tired, but I might call it trail of destruction. I don't know if I I'm not sure why.
It does feel that way.
Yeah. It's good. Well, you I that's a phrase you used, and and I thought, well, that might be right. But you're not on that trail anymore. Right?
You wouldn't think of yourself that way.
No. Not at all. I'm very hyper aware of myself and my actions and my words. It's just, you know, at some point, you do have to look back and realize the damage you caused and not run from it. But face it and face everything you're going through.
And, you know, your body does it to protect you, which it's like, thank you, but no thank you.
You know how I know But when the con you know how I know a conversation's going well? When you're speaking or the person I'm talking to is speaking, I have my thought. I'm like, oh, I wanna say this next, and then you say it instead. And that just happened. You I I thought, you gotta face your shit and I'll hold that thought.
Let her finish her thought and then I'll I'll chime in with that. And then you just said it instead. And so, yeah, maybe you just have to maybe that's the it. Maybe that's the title of this one. And I can't put shit in the title, though.
Face yourself? What do you think?
Well, you know, you did say that that's what you do best. So I'm gonna leave that to you.
See, why would that's horrible to do to me at the very I was giving you the chance to name this episode and just left me
I'll never come up with one better than behind the cheese.
I am a genius.
I hear genius title. I hear It pulled me right in.
I hear what you're saying. I am thrilled that you only found the podcast a year ago, and it feels so valuable and present to you that it doesn't feel like an old thing you found in a closet that still is fun but smells weird. And that that means a lot to me that the podcast is is is producing at a high level still this far into it. I'm gonna take that from this and a lot else, by the way. So thank you very much.
I guess we'll find out what it's called when it comes out. But if you'll hold on for just one second, I just need to tell you a couple things after we're done recording. But thank you.
Thank you for giving me this opportunity to bring awareness. And this was also pretty healing for me because I haven't talked about a lot of this, yet. So
I'm glad.
This was a very healing experience for me. So I appreciate you having me on and giving me the platform to do so.
Well, congratulations on facing your stuff. I think it is commendable and not a thing that everybody, can make happen all the time. So you you you took a huge step. Yeah. You're welcome.
You're you're saving your life, you know. Hold on one second.
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