#829 Chinese Hamster Ovaries

January 18, 2023Scott Benner

In episode #829, "Chinese Hamster Ovaries", we spoke with Cassandra who bravely shared her story of living with type 1 diabetes and a host of other autoimmune issues. Her experience was truly inspiring, and provided insight into the challenges many individuals with diabetes face. Cassandra's willingness to share her journey gave hope to those living with autoimmune disorders, as she showed us how to stay positive in spite of the difficulty of managing diabetes and other conditions. Her courage and strength were both evident in her story, and it serves as a reminder that even when faced with the toughest of life's challenges - like diabetes - it is possible to find joy and live a full life.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 829 of the Juicebox Podcast.

This episode came very, very close to being called U turn because of the amazing turnaround that Cassandra made. But then something happened at the end, and now it's called Chinese hamster ovaries. So, what do you think of that? While you're trying to figure out why that could be? Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. Are you the caregiver of someone with type one or a type one yourself? Please head to T one D exchange.org. Forward slash choose box and fill out the survey. When you do. You'll help move diabetes research forward, you'll support the Juicebox Podcast and you may just help yourself. You'll find out more about why that can be AT T one D exchange.org. Forward slash juicebox. So much music left again. Huh boo doo doo doo doo doo doo doo doo doo. You should check out the private Facebook group Juicebox Podcast type one diabetes. That's a good thing to put here. And yeah, there's a podcast website to juicebox podcast.com. This episode of The Juicebox Podcast is sponsored by touched by type one, what a great organization touched by Type One is they do so many things for people with type one diabetes. And they've they've asked me to tell you that they would just like you to come check it out. It's it touched by type one.org. You can also find them on Facebook or Instagram but touched by type one.org lays out the whole thing. Take two minutes today and go see what they're up to. The podcast is also sponsored today by ag one from athletic greens. I begin every day with a scoop of ag one from athletic greens that you could as well actually they're offering a free year supply of vitamin D and five free travel packs for new customers too. That's all at my link athletic greens.com forward slash juice box.

Cassandra 2:23
My name is Cassandra and 35 years old. I've been a diabetic for 24 years now. And I also suffer from some other autoimmune diseases which I guess we will come later to. And I've not always taken the best care of my diabetes and I also suffer from gastroparesis and retinopathy

Scott Benner 2:49
gastroparesis and right up. Okay. All right. So you were 11 years old when you're diagnosed?

Cassandra 2:56
Yep, pretty much pretty much

Scott Benner 2:59
11 years old. 24 years ago. Oh, the math on this is pretty easy, isn't it? 1998.

Cassandra 3:06
Wow, I'm impressed.

Scott Benner 3:10
I really just had to subtract two from 2000. So wasn't, it wasn't that tough? I was like, Oh, I can handle this one. Our you know, that was long enough ago, right? Like things weren't terrific. As far as management goes back then. Were you regular and mph?

Cassandra 3:29
Yeah. In the beginning. Yeah. And then they kind of switch me. I was in honeymoon for the first four months. And then they switch me to like a mixed insulin, which was like premix mph and regular. I don't know the name, country member. But you had to pretty much eat on a schedule and eat the same amount of carbs every day.

Scott Benner 3:59
That sounds fun. Yeah.

Cassandra 4:01
And my mother was on it. And we had to take like the scale everywhere. And then after a year, the endo was like, you could go on a pump. And my mother was like, fully against it and was like, no, no, no. And I was like, Yes, I want to do that. Because I knew she had no clue about technology. And that could gain like little bit of independence back.

Scott Benner 4:31
Oh, are you saw the pump as a way to distance her from the management?

Cassandra 4:36
Yeah. Yeah. Because she was controlling me. I couldn't have any kind of sugar. And she really micromanage me and I was like, I want to get away from her.

Scott Benner 4:48
Cassandra did that lead to any kind of rebellion or eating disorders?

Cassandra 4:54
Not eating disorders, but rebellion and it lasted for Like a very long time, pretty much into my mid 20s. Okay, I just sneaked food, ignored diabetes, and just pretended it didn't exist. Because I was so traumatized by her behavior of micromanaging me that just pretended diabetes doesn't exist.

Scott Benner 5:26
As an adult, have you had an opportunity to speak to her about it?

Cassandra 5:29
Yeah. And she still thinks it, if I would have adhered to her rules and like the carb counting and just to exercise a lot, I wouldn't need to inject insulin to this day. She does. She just fully doesn't get the concept of running.

Scott Benner 5:52
Okay. Hey, is this a cultural thing? No, no, it's not. It's not not totally belief that she grew up around or something like that. Okay.

Cassandra 6:00
No, it's just she thinks she's a superhero.

Scott Benner 6:06
I'm trying to pick through who you are, Cassandra? Because your name and your accent don't go together.

Cassandra 6:12
Yeah, I'm so I'm from Switzerland.

Scott Benner 6:15
No kidding. Okay. Yeah.

Cassandra 6:19
Yeah, but my parents saw a TV show with a girl named Cassandra. And they named me after her.

Scott Benner 6:27
I say, I say, hey, that part of the world type one, pretty prevalent. No, no, you didn't know a lot of

Cassandra 6:39
no one in real life. I mean, I made friends now since I'm looping. And I'm pretty active in the community here locally. But before that, I knew nobody. I say,

Scott Benner 6:53
oh, that's that makes it even harder. So So you were able to create this space between your mother with the technology, but then instead of taking care of it and doing it you would you use that opportunity to ignore it? I'm correct about Yeah. Okay. Yeah. Did she ever check back in to see how things were going?

Cassandra 7:16
Yeah, I mean, she asked how my blood sugar is. And I was always like, Yeah, great. It's like 100 or 110. And my agencies, agencies came back lag in the 10s and twelves. And of course, then you something is wrong, but they also somehow gave up.

Scott Benner 7:39
No one called you out. No one said, No, your agencies don't match the blood sugars you're telling us about?

Cassandra 7:45
Yeah, well, they checked my glucose meter. And they knew it's not matching up, and there are high numbers in it. And it's not much written in the logbook. But that was about the

Scott Benner 8:01
extent of it. So you weren't a great liar. Just the cops that were chasing you weren't good cops either. Yeah. I see. That's like a Benny Hill sketch. So there's a reference Cassandra, no one's gonna get but we'll just leave it there. Anyway. So you say this went on until your mid 20s? So maybe 15 years?

Cassandra 8:23
Yeah, probably well,

Scott Benner 8:26
and a once he's 1112 that whole time?

Cassandra 8:30
Yeah. And then, I mean, maybe early 20s to gastroparesis started that fast, okay. I had like, just pain in my gut, and they, they try to research it and check it and they just came back. Well, there's nothing wrong with you. So it must be gastroparesis. And they just put me on meds and that was about it.

Scott Benner 9:06
Did you notice Did you notice slow digestion when you were using insulin or were you not even using insulin well enough to know

Cassandra 9:14
No, I mean, I use my Lantis maybe once a day and if I did that it was I cared a lot so I was really ignoring it.

Scott Benner 9:27
I gotcha. Yeah.

Cassandra 9:30
It's I never covered meals. Maybe if I I recognized them super high corrected with no luck. But not like on a regular schedule.

Scott Benner 9:45
Recognize that you are high like got cloudy and foggy and tired and thought I'm

Cassandra 9:50
tired and thirsty and yeah,

Scott Benner 9:53
heading towards DKA you realize you feel it, but you wouldn't pick up a meter and look otherwise.

Cassandra 10:00
Sometimes didn't pick up on me for like three months.

Scott Benner 10:04
Okay. Cassandra, can I ask you? I'm just gonna ask if I can ask you a personal question. But this whole thing is a personal question. So I guess I'm okay. Were you punishing your mom quietly?

Cassandra 10:16
I'm not sure. But yeah, probably.

Scott Benner 10:20
So it really had an effect on you. What happened to you when you were? Yeah. Did she? Did she control your food? More than I'm imagining?

Cassandra 10:31
Well, she said, Yeah, I mean, it was, I was supposed to eat six meals a day. And it was like for lunch. Here you have pasta. And it is no matter if you're hungry, no matter if you had enough. Just eat this. Now, and also, I had to have some kind of protein or fat like yogurt before I go to bed. And it wasn't the question if I wanted or if I'm up to, I just had to.

Scott Benner 11:07
And like you were testing to see if you needed these things. She was just following, like, some strict instructions, the instructions. So the original instructions. So 24 year old original diabetes instructions, your mom never deviated from she just thought this is that everyday rest of your life? Yeah, yeah. Well, you have your reaction is I'm going to make a weird comparison. But when we were teenagers, if we wanted to try to like find girls that were friendly, does that make sense? Cassandra? Yeah, we would go to the Catholic school girls, because they were more rebellious. So they were they were looking to run with the public school girls were like, I'm allowed to have sex if I want to. And I don't want to, but the you know, but the people who are being told no, don't do a thing. They were the people who pushed back against it the most.

Cassandra 12:00
Yeah, of course, I guess it's normal reaction. Yes, human.

Scott Benner 12:03
Yeah. It's interesting. But why do people? Why do people not see that when it's their turn to make a decision for another person? You know, they mean, like, your mom was a grown person, somebody must have done something like that to her as she grew up. How is that like, you know, for me, I thought, well, let me figure out how this insulin works. Because the last thing I want to do is micromanage food in a way that might give my young child weird feelings about food, or can make her feel rebellious like this, make her want to run in the other direction. It just seemed like common sense to me not to do that, but but this is really something else. So. Okay, so you're in your early 20s. Can you explain the gut pain that you talked about? What was it like?

Cassandra 12:50
I can't really remember, but it was really intense. I was admitted to the hospital several times because I was bloated and was just cramps. intense pain.

Scott Benner 13:04
Full of food is what you are, right? Yeah, yeah. Yeah. So what did they do for you once they say we think this is gastroparesis,

Cassandra 13:14
that just give you like, some medications for the nausea. And so that, that the testing is sped up. But those medications don't work very long. And there are still to this day, no medication, like clear to the FDA or something for gastroparesis. And that's the struggle for all the people that gastroparesis, that net work for a set amount of time, which is usually like six months, a year, if you're lucky. And then you have to change over again

Scott Benner 14:01
to something else. And these medications need to be taken time you eat or once a day, or how does that work?

Cassandra 14:08
Yeah, most of them with like with a meal.

Scott Benner 14:13
Isn't it ironic? Cassandra, the thing you were trying to avoid, which was doing something on a schedule, became the thing you had to do. Yeah, that's crazy. I'm sorry.

Cassandra 14:24
Yeah. And but the kind of funny thing is, all the pain went like way over the years. So I guess my nerves are so damaged. I don't have pain anymore. But I still have the gastroparesis and basically, only know it because I'm very tight control now. And I see that my Dexcom goes up like not instantly after a meal, but later.

Scott Benner 14:58
Yeah. So you See the delayed emptying the delayed digestion? And then it hits. So how far after a meal do you have to Bolus? Do you wait to use kiss if you ask the Pre-Bolus? Because you have a four eight that you say? Yeah. Are you eating a low carb lifestyle now?

Cassandra 15:17
No, not at all. What I do is I do intermittent fasting. Because about it's not really like a diet choice. It comes just more natural because I only want to eat once a day.

Scott Benner 15:33
Okay, what's your what's your window?

Cassandra 15:36
Like, from 12? to, like, from noon to 8pm?

Scott Benner 15:42
Okay, and but you eat one meal in that time?

Cassandra 15:45
Yeah, most of time. It's dinner. And I mean, sometimes a little snack like nuts or something in the afternoon.

Scott Benner 15:53
You have any trouble drinking things or that liquids are okay, no,

Cassandra 15:56
no liquids are totally okay.

Scott Benner 16:00
What? I'm sorry.

Cassandra 16:02
And also, I had, like a small surgery beginning of the year for the gastroparesis. It's a super new thing they do they kind of enlarge the palace, so that the food goes through faster.

Scott Benner 16:24
The major pipe bigger.

Cassandra 16:26
Yeah, basically,

Scott Benner 16:27
did it help

Cassandra 16:29
it have a tongue? No kidding. It was really amazing to kind of see the change. Also on the Dexcom graphs, that food is getting sore. Faster. And also, if I have like low, I can drink a coke. And it's working within five to 10 minutes. That's the one I mean, yeah. wasn't the case beforehand.

Scott Benner 16:59
Right. Right. People don't think about that. Like when your body's not absorbing and digesting. It's also hard to stop a low blood sugar. It is yeah. How did you not how when when did you decide to pay attention to your insulin?

Cassandra 17:18
It's, it was actually really funny, maybe like, three years ago? Or no, let's start started with the earlier in my mid 20s. I decided I wanted to take better care of me. Um, and I tried really hard and my agency Medicaid, who down to seven and my endo was like, Yeah, that's great. You're doing such a good job. And it probably won't get better to do to all the things you're going through. And she was like, yeah, that's about how good you can get.

Scott Benner 17:59
Like, a seven they thought was his best was the best you could do. Yeah. What did you What did you think when they said that?

Cassandra 18:07
I was like, No, no way.

Scott Benner 18:10
Okay, so you were motivated at that point? Yeah. Okay.

Cassandra 18:14
But also kind of the funny thing was, they always told me like you're diabetic for such a long time, you know how to do things. But actually, because I was in denial, or ignored it for so long. I didn't have all the tools.

Scott Benner 18:34
Right. You are pretty much newly diagnosed as far as your understanding what Yeah. Are you were you able to? Did you recognize that?

Cassandra 18:44
No, not for a very, very long time. And then my endo came up with the superduper, Medtronic 640 Qi. And she was like, you could try that one. And I was like, a tube pump? Maybe not. But I was so desperate at that point that I was like, yeah, maybe I'll give it a try. And then I started researching. And I found out that and then you about yourself looping. But I knew we'd only works like with the old Medtronic pumps. I remember then I found the website again and found out that only like three months ago, they found out how to make it work with Omnipod. Right. And then I wrote my end on email. And thanks for my Tronic I'm not going to take that I go do it yourself route.

Scott Benner 19:52
So you went way but you went from not taking care of yourself at all to using a do it yourself algorithm that you got off the internet

Cassandra 20:00
Yeah. Then she will. I mean, she knew I'm able to build it myself because of my professional background in it. And she also had some real kind of confidence in me. And she just let me do it. And my Avon fee went down within three months from the seven, seven a half range to 5.2. And it's ever been then there since maybe three years.

Scott Benner 20:35
And that's a few years ago, three years. Yeah, three years. How did you learn about the loop? just Googling and looking around?

Cassandra 20:43
Yeah. And then that's pretty much also the time where I spent the podcast. And then I remember things that were taught to me like Pre-Bolus thing. And I started paying paying attention to that again. And then yeah, it was pretty much a self runner.

Scott Benner 21:03
Wow. Like it's you. But you figured it all out in in short time, does it? Are you trying to figure out how you're able to handle this? So are you do you look backwards now? And are you just happy? You changed? Are you angry that you didn't do it sooner? Like how does that like once the dust settles? How do you feel in your head?

Cassandra 21:25
It's a bit like OMG Why did I do that sooner? Yeah, it will be so much easier now. But I'm also just like very happy to see how I feel day by day that I feel so much better.

Scott Benner 21:48
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Cassandra 24:00
that I feel so much better. And it's more like looking back and how could I survive with like blood sugars in the 210 300 All the time

Scott Benner 24:15
you're making me smile I don't usually smile this much when I'm talking to somebody you just what you just said really just put a big smile on my face. I'm glad you're not bitter about it. I'm glad you're excited. And it's fascinating that you just switch gears and and found a Do you have any do you have any feeling about what it was that made you care all the sudden?

Cassandra 24:40
I guess the loop was kind of the key to it because I always had the impression that I don't get the right tools to do it properly and with the loop. I kind of felt like I'm supported enough to make good decisions. And and to take care of this. And then ever had that feeling before?

Scott Benner 25:05
Because you You described earlier that you were working hard at it at one point, but having no success.

Cassandra 25:10
Yeah. Right, because I haven't had the right tools.

Scott Benner 25:14
That is I think that's one of the most important things that a practitioner can hear is that you cannot send somebody to war, you know, with a pool noodle. Right, right. And with or without the weapons they need. And then when they come back, look him in the face and, and they fail. They know they failed already. And then you tell them they failed. Or you give them some kind of BS, like pep talk. You don't

Cassandra 25:43
put a pat on the back. Yeah, you're doing you say, but you would, you could

Scott Benner 25:47
Yeah, it's like you're in a basketball game, and you're losing by 70 points. And your coach calls a timeout pulls you over and goes, guys, we're in this. Yeah, no, we're not. Yeah, I know. We're not in this. I'm out there. I'm killing myself. We're getting run over. There's nothing here you're, you're happy words are not going to make this better.

Cassandra 26:08
It's also really funny. It's not only the end of that, or the end all brains that work like that. I just recently made this experience also with another immune autoimmune thing going on. And I, all of a sudden, like joint pain in my fingers started last summer. I mean, it was really noticeable that my right hand was swollen, and my left was and it was hurting luck. And I went to the rheumatologist. And then he basically he took plot and checked everything. And he was like, No, this is another array. It's probably just diabetes.

Scott Benner 26:59
diabetes just made your hand swallow.

Cassandra 27:01
Yeah. And then I was like, Well, no, I don't think so. And then he said, it's I never heard that term before. Diabetic Kairo arthropathy and wait, what? Yeah, I knew he said it's that

Scott Benner 27:19
oh atrophy

Cassandra 27:22
I wrote arthropathy

Scott Benner 27:28
I might have any are homozygous diabetic or to articulate the

Cassandra 27:36
like you can extend your fingers anymore.

Scott Benner 27:39
Oh, the trigger finger. No, no, no, not trigger for everyone. No. is a nerve disorder, which is complications of diabetes mellitus. It affects the thighs, hips, buttocks legs, causing pain and muscle wasting. No, no. I'm not finding it. Spell the second word for me.

Cassandra 27:56
It's like It's like AR th Oh, I gotta pee.

Scott Benner 28:08
Wee that went away on me. I got patients with diabetes decreased sensation in the joints as a result of diabetic peripheral neuropathy can cause chronic and progressive arthropathy. It occurs as a result of increased laxity of ligaments increased range of motion of joints instability and repetitive micro traumas with poor healing that sound right? Yeah, that's what he thought. But what was it really?

Cassandra 28:38
All right, let's say negative.

Scott Benner 28:41
So negative for antibodies for RA. Yeah, but symptoms are there.

Cassandra 28:45
But I mean, it took me like seven months and several visits to several rheumatologists. And I also talk to my endo about the diagnosis from the first one. And she said she's an endo now for like, 20 years. And she has seen two patients who have this with what

Scott Benner 29:06
the other person said. Yeah. Well, what are some of the symptoms like tell people exactly how you came to seek out the doctor?

Cassandra 29:18
Yeah, just because my joints were really swollen. And it hurt a lot in the morning and I was like, stiff in the morning and it needed time. And actually, the the funny thing is with moving the fingers, it gets better.

Scott Benner 29:35
Okay, kind of break. You can break it free over time.

Cassandra 29:39
Yeah. It's like it's iced and then if you move it, it gets better.

Scott Benner 29:44
Okay. Painful every day. Yeah. Do you take anything for it?

Cassandra 29:50
Yeah, um, then, I mean, the rheumatologist will who said yeah, it's maybe Ra, right? On the corner, he said let's wait some months until we start treatment. And then I I went back to him like four months later and he was like, Ooh, your charts are fifth voelen we need to do something now. And then he put me on immuno suppressants. And that didn't work went well at first, because it was like, three months after my gastroparesis, surgery. And then the gastroparesis started to kick in again. It just basically paralyzed my gut.

Scott Benner 30:41
So you're chasing down this Ra was pretty recently to in your life. Yeah. Okay. How long do you think it was going on until you till you went to a doctor?

Cassandra 30:53
Oh, like only maybe a week. Oh, you because I had the feeling.

Scott Benner 31:00
So it came on and you went right away.

Cassandra 31:04
When this all started, I had a feeling. Yeah.

Scott Benner 31:09
Wow. So what is that? Hold on a second. Let's let that go for a second. Because I'm gonna just, I'm gonna pile all the sadness right here in the middle, and then we'll talk some more. retinopathy.

Cassandra 31:23
Oh, my God, that's even a sad part.

Scott Benner 31:29
That's why I kept it for the end. Go ahead.

Cassandra 31:33
retinopathy started, like, probably in my mid 20s. I had just, at first I just had some, like, blurry visions, like flies that I saw. And I mean, I was I went to the doctor, and he said, said right away, it's retinopathy. And they did several laser surgeries. And then, at one point, it got that bad that we were in a restaurant and paid and left. And in that very moment where we left the restaurant, I couldn't see anything, my vision was gone. And then I went more or less directly to the hospital. And they did surgery. And then the first I they could rescue, and then I got pneumonia from the anesthesia. And I had to wait, like, almost a month for the second surgery. And yeah, that's the reason I don't have any vision on my left eye

Scott Benner 32:56
anymore. completely blind in your left eye.

Cassandra 32:59
Yeah, I mean, I see some light. I see. Like, if it's like, light or dark. But other than that, no, that's pretty much it. I'm sorry. Well, well, you could use to it.

Scott Benner 33:15
Do you really? Yeah. Can I sneak up on you from the left side, though? Sure. Okay. You got you couldn't, that you can't overcome, right? No, no. Does it have a big impact on your life?

Cassandra 33:31
It does, but my partner is really as as really supporting me. Very, I needed. So if you think hard about it, it has a big impact. But my support system is so great that it happens. If that makes sense. Oh, that's

Scott Benner 33:55
wonderful. How long have you two been together?

Cassandra 33:58
Um, in January, it will be a decade.

Scott Benner 34:02
Wow. Nobody's not getting married? No. How come? Is it? You are? Or I'm sorry? Him, right?

Cassandra 34:11
Yeah, the both of us. Most of you don't want to be married. Yeah. We just don't see a reason and we don't want kids. I wanted kids for the longest time and then I thought hard enough about it and decided not one kid.

Scott Benner 34:28
So come over here. I'll show you how much money I spent to send my kid to college. Y'all know he did the right thing. I mean, he's lovely and everything, but it's a lot of money. Yeah.

Cassandra 34:41
Well, I'm gonna have a doc and I can barely take care of him. So maybe that's the right decision then.

Scott Benner 34:49
Can I ask you Cassandra and not that I think that wanting to get married makes you like mature. I don't think people should get married if they don't want to be married. But are you Is there something about your life's path that like that late leads you to be in a situation where you're like, I can barely take care of a dog?

Cassandra 35:09
No, no, no, the the marriage thing is more like our Texas would double O. And you don't have an advantage. So why should we do it?

Scott Benner 35:24
This is this is the keep the the man's hands off your cash. I understand. Okay, that makes that makes sense. Do you get treatment on the other eye?

Cassandra 35:38
Well, I just my eye pressure is high. So I need daily drops for that. But other than that it's stable.

Scott Benner 35:48
Okay, you haven't been getting like laser or needles or anything and the other eye.

Cassandra 35:53
I had that. I had the needles. It was frightening three. Well, it didn't hurt. But it's really frightening to have a nine year needle in your eye.

Scott Benner 36:03
Yeah, I know. I've had people describe it on here before and how you have to stay perfectly still. And yeah, it's coming right at you. You can't close. You can't move. You can't blink. You can't. It's just It's crazy. And but but it doesn't hurt. Is that correct? No, it doesn't hurt. Who do you think the first person is that figured that out? Who had the who had the balls to be like, I don't think this Jesus?

Cassandra 36:31
And I guess at first it was medication against breast cancer. Really? Yeah, they only made recently like, really separate medication for the retinopathy. But at first it was a medication against breast cancer. And they also gave it like to very old people and some people had to go in every week, or every second week. And one injection was like 2000 bucks. And it wasn't even covered by insurance.

Scott Benner 37:08
That's something else. Well, I guess to see to save your vision. Probably there's no cost. It's too high. Yeah, if you can come up with it.

Cassandra 37:16
I guess. That's exactly

Scott Benner 37:18
alright. So autoimmune stuff. We are we have we run through all the autoimmune that you have, or is there anything else? Oh, no, of

Cassandra 37:25
course not. Go ahead. Um, I booked for the longest time I have no dermatitis. But turns out no, it's or to carrier. That sucks. Yeah, it's just you get hives all over. And they actually only diagnosed it very recently, like three months ago.

Scott Benner 37:54
How long has that been? Sorry, how long has that been happening to you?

Cassandra 38:00
Yeah, probably like five years or something. But they will always thought it's no dermatitis and gave me a Styria steroid, just topical. And it wouldn't make things better until they found out I'm allergic to potatoes in one day and to the Dexcom adhesive the other day.

Scott Benner 38:26
Is the How often does the the hives flare up?

Cassandra 38:31
of I guess it's really it really depends. But I would say maybe like once a week and then sometimes I have stretches of time. That it's like constant.

Scott Benner 38:47
Is it painful?

Cassandra 38:50
No, it's just itching like crazy.

Scott Benner 38:53
Does. Do you have a thyroid issue?

Cassandra 38:57
Yeah, of course. Of course.

Scott Benner 38:59
Just like I got it all baby. I'm collecting

Cassandra 39:02
all you could probably get

Scott Benner 39:06
you're gonna win McDonald's Monopoly for autoimmune diseases. So tell me something. Are you hypo or are you Yeah, I'm hypo but Natasha. No. Do you know what your TSH is?

Cassandra 39:21
Um, I mean, the high DECA highest it got was five. But at the moment, I'm like around 1.2.

Scott Benner 39:31
Do you supplement with any T three?

Cassandra 39:35
I have to Cynthia.

Scott Benner 39:38
No. T That's the T 40. Do t Oh,

Cassandra 39:41
I'm sorry. No, they wouldn't give me the T three. Because that was also a thing I had to push so hard that they even put me on theorising

Scott Benner 39:51
for a five TSH they wouldn't put you on.

Cassandra 39:54
No. Oh, not under 10

Scott Benner 39:57
monsters. Hold on a second. That So are you do you have any other weird? Are you tired? You have low energy? I

Cassandra 40:04
was so tired. I could sleep 24/7

Scott Benner 40:08
How about now?

Cassandra 40:10
It's so much better,

Scott Benner 40:11
so much better. Does it still exist?

Cassandra 40:15
Like that? I'm getting tired. Yeah. Yeah, I mean, there are times when it happens, but I mean, it's so much better now. I could barely function

Scott Benner 40:30
with the flag. Sure. No, I believe that. It's just my son manages his Hashimotos with T four and T three and RT and manages with T four with just with T four Arden even if when Arden's TSH is very good under two. She's still exhausted. It's the T three that gives her the energy. Okay. And contesting my son's only. I mean, obvious symptom, which led us to figure out that eventually he had Hashimotos was hives.

Cassandra 41:04
I was Yeah, yeah, I read that too. And was wondering if it's somehow connected.

Scott Benner 41:12
Yeah, I don't know why they wouldn't just try like so. I mean, you have to find a real outside of the box thinker for your thyroid. But like Arden takes, I think Arden takes one few like instead of, I think the move down her tears and a little bit and then added to T three. So her TSH is still right where they want it to be. But a lot of her other symptoms are gone. Yeah, I just think well, what would it hurt to help to do that for you to see if it alleviated the hives?

Cassandra 41:42
I don't know. I actually was really motivated after your episode with Dr. Benito. To seek like a second opinion on the TSH thing. Yeah. And then I went to another endocrinologist, because there aren't that many around here. So I went to that one. And he was like, well, you're on such a low dose of terrorists. And you're not even High Pro. That that won't explain that you feel better.

Scott Benner 42:14
Yeah, that's just people looking at numbers and talking. What? What's your dose?

Cassandra 42:20
Like? Back then my dose was 25. And then now I'm 38.

Scott Benner 42:25
Okay. How much do you weigh?

Cassandra 42:29
Oh, um, weight, calculated 125.

Scott Benner 42:34
It is a small, it's a lower dose. But still, I mean, a TSH of five. i If anyone's listening, if your TSH is five, do not let somebody tell you you're in range. If you have symptoms of hypothyroidism, or Hashimotos, find a doctor that will give you medication, those symptoms will be helped by that. There's too many too many doctors with thyroid that treat the end range. I'm making air quotes. As as the letter of the law, it's almost like diabetes, where they tell you like 15 carbs. 15 minutes you're like, but my blood sugar is always 300. Right? Yeah. 15 carbs, 15 minutes. Those are the rules like like, sometimes you just have to treat the symptoms and not what's written down somewhere. So yeah, I don't know. It's tough because you have a limited amount of doctors to go to. Yeah, you should find a friend who's on T three. And I'm saying and grab a couple of them. Because the funny thing about T three is it works so quickly. That you will know very quickly if it's having an impact. Oh really? Yeah. Which is the which is like if you in your situation with a well managed TSH, you're already getting tea for. If someone added like a Saito, mille or even like an armorer, thyroid as a supplement to that,

Cassandra 43:55
you would know even half armor here.

Scott Benner 43:57
Yeah, you would know inside of four or five, six days, like you might feel more energy or you might see I just It sucks to think that somebody wouldn't give you a pill. Site ML is an example, for a couple of weeks to see if your hives go away. Like it's not gonna, it's not gonna hurt you. They just they'll just take down they'll probably what they would probably do is remove one of your tears and pills a week, you'd take it six days a week, and then you would take the T three at the right level seven days a week and see if it had an impact. And if it did, then great. And if it didn't think you stopped taking it. It's not like it's gonna make your head fall off. You know what I mean? Plus,

Cassandra 44:36
yeah, but they act like it was I know.

Scott Benner 44:39
Plus, Cassandra, you're kind of tough. You know what I mean?

Cassandra 44:43
I'm pushing them Yeah, yeah.

Scott Benner 44:45
Well, no, I don't mean to I mean, like physically, like you've got like, a wheelbarrow full of problems. And you're just like on here light hearted and talking about it. And I mean, you could handle a little bit of like, trial and error for your For some other stuff, you know?

Cassandra 45:02
Yeah. But I also think like with this myriad of illnesses, doctors are really cautious to try something.

Scott Benner 45:15
Will you have hives, so they should try something, by the way,

Cassandra 45:19
actually, um, because the antihistamines didn't work as well as they expect, and also because my kidney is can have damage. I mean, it's not really bad, but they are cautious. Um, they said they put me on solar, which is a biological

Scott Benner 45:45
Sondre wish you and everybody listening could see my other computer screen here where I have just in the last couple of minutes pulled up Xolair to talk to you about to see if you if anybody brought it up to you. I felt very, I felt very accomplished when you said that.

Cassandra 46:00
I mean, Scott, the funny thing is, I had to grind it up.

Scott Benner 46:03
Oh, yeah. And nobody's gonna help you. It's hives is one of those things, doctors, so don't understand that. It's just you almost get the like, Oh, that's a shame. Go home. You know? Yeah, that really seems like it sucks. I don't know what to do. Uh, see you later. I so you have you've been taking this all air for how long?

Cassandra 46:23
Yeah, I actually got my second shot. So you get one one shot per month, right? I got my second shop like two weeks ago. And it actually has been great with the house. They're gone. Wow. But big. But it messes so much with my sugars. That won't pick the next.

Scott Benner 46:50
So it makes us it messes with your blood sugar's for how long? Always we're just during No.

Cassandra 46:56
It's really funny. I actually research this that kind of on day seven or eight, after the interaction, the solar is at its peak. And there, I get like, I need to dose like 200% I need an override for 200%. Kind of in range. How long? It depends. It goes away and then comes a little back and it's not linear. It's not like with steroids where you have like a clear curve, hours, days, days.

Scott Benner 47:39
Are you really thinking about not doing it anymore?

Cassandra 47:44
My plan is kind of get off of it for one month. See if the hives come back. See if the blood sugar thing goes away and decide then with the data I have.

Scott Benner 47:59
Yeah, I mean, I know you don't want your blood sugar to be high. But it's all there is not forever, right.

Cassandra 48:08
Could be forever. It's not clearly stated.

Scott Benner 48:14
I hear some people take it for like six months or so. And then they try to get you off of Oh, okay. Because I mean, listen, I'm not you and you know what you can tolerate. But if you could, if you could get those hives pushed down? That'd be a big deal, I would think.

Cassandra 48:29
Yeah, yeah. I mean, look, the problem is more, like, I have so many inferences on on my beachy, that sometimes there's such a huge mess that I'm getting anxious, because I can really see what from what, and then just adding insulin on top of it on top of it on top of it. And finally, you're on such a high dose of insulin and then you crash. And you don't know from what right, you know what I mean?

Scott Benner 49:07
No, I know it's scary. It is you get a little paralysis, right? Like there's so much going on, you just don't know what to do.

Cassandra 49:16
It's just very difficult to manage. If I know I get a steroid injection, I'm high for three days and then it's gone. I'm completely fine with that. I can manage that. But I also for example, suffer from from UTIs and I don't have like pain from the UTIs but my blood sugar gets really wonky and I need a ton of insulin.

Scott Benner 49:40
Okay, how often they happen like weekly. That's interesting even though you have your blood sugar's are so low.

Cassandra 49:49
And I got really good at the debt, detecting them and I'm like on a on an antibiotic. Technically now, but I mean, it's just so much going on that, how should I manage this? And then if one thing falls away, it's such a huge amount of insulin that probably I'm going into the 40s during night, and I'm just not really up for that. No, I

Scott Benner 50:23
understand. I can't listen, I can't blame you. And it's up to you. Right? What you're what you're willing to deal with. Like, it sounds to me like, the more stable blood sugars are more meaningful to you, and more comforting than the removal of the hives. Is that right? Or?

Cassandra 50:42
Yeah, kind of, because I don't know how I will decide in the end. But that just want to see what it does if I just leave out the month. Yeah. And I mean, if the Habs come back, I probably will end up doing the solar again.

Scott Benner 51:02
Yeah, well, it's they're terrible. Just having

Cassandra 51:04
kind of the clarity to see where does it come from is really bad that influences it, just to have clarity?

Scott Benner 51:17
Well, you would think that with all this going on a doctor be willing to try, like, re managing your thyroid to see if it impacted the hives, because I'm telling you, my son got them terribly. And okay. And he, we got him on to tiersen. And then they added the T three goddess TSH, way down, he's fine now, and the hives have never come back. And it took a lot of research for us to figure that out that there is a connection there because it's not common for someone to go live. But it does occur. I'm sorry, I have to clear my throat. No problem. I had to dig through NIH articles to find a connection between hives and an Hashimotos, which we did not know we had at the time at the time, they were treating him just like they treated you like here's a steroid, all that crap, right? And none of that obviously had any effect on him. And we just kept saying, like, Well, what about this? What about this, and finally, I got somebody to test his TSH. And we caught a real high number. And he was I think, in some sort of, like his, I think his thyroid was like fluxing around because he we caught like this number, I think in the 60s or the 70s. And then all of a sudden it dropped again, because they were now taking his blood pretty consistently. And Dr. Bonilla was like, it doesn't matter. Like we're putting them on the medication, put them on, and it took six weeks for it to get him straight. But it was so I've said it on the podcast before. But if he heated up, got excited, somebody scared him, like his adrenaline popped up. If he tried to lift weights or exercise no matter what he did, he'd break out from his neck to his waist. Oh my God, that's terrible. And then the only way he can make it go away. And luckily it was wintertime hit a walk out in the freezing cold, lower his body temperature. And when he lowered it away, went away. Oh my God. So he lived for months in his bedroom in November in on the east coast of the United States with his windows open so that he wouldn't break out until we could figure out what was happening. Oh, that's that's so terrible. Yeah, we basically took him he's a college age kid, we basically put them in a refrigerator, so that he wouldn't be wouldn't Encap him still. And he's a baseball player and an athlete and he got heavy, like, you know, the the plastic in the steroids. He got out he got that medication went right back into the gym, like whipped himself back into shape again. And it was and he was, it was a tough time for him. And he only had that happening. And I'm listening to all the things you have going on. And then it leads me very naturally to my next question. Like do you see a therapist? Yeah. Like, are they with you constantly? Like, I, I thought I'd be like, Listen, why don't you live with us? But But Is that helpful at all?

Cassandra 54:16
Sometimes it is. And sometimes I think it would be really helpful to really have a therapist who suffers from diabetes or just another chronic illness. Because, I mean, she is like, really compassionate. But that's sometimes think like, they don't really get it. Yeah. They don't know what it feels like to get Dexcom alerts every hour to a night and your sleep deprivation provided and need to go to work the next day.

Scott Benner 54:54
And it would be better it would probably be more meaningful for you meaningful for you if it could come from somebody who acts So you knew what you were talking about? Yeah. Have we missed any other issues? Because I have some follow up questions for you. But we're getting close to an hour. So do you have anything going on that I haven't brought up yet?

Cassandra 55:14
No, I think that's, we got enough.

Scott Benner 55:18
So then I have a couple of questions. And but before I asked mine, have we not talked about anything that you want to talk about? No, thanks. Good, good. Good. Okay. So I have more questions. I'd like you to talk about, you're an interesting person, obviously, you know, the, a huge, you know, a litany of issues that you're dealing with that are autoimmune. And then on top of that, you have long term, side effects of poor care. And so I guess I want to understand first, about perseverance, and what keeps you going.

Cassandra 55:59
Um, I just think life is not over yet. And I just take it day by day, and I kind of see the comparison of how I felt like five years ago, and now a few now and it's so much better. And I just take one thing at a time. I mean, if I would think every day about every single issue, I will probably go crazy. But just take one step at a time.

Scott Benner 56:34
And so is it that is it the whatever is most present, or do you? Or do you kind of have a list? Do you work from what you know, you have to do? Do you know what I mean? Like do you have a plan in place? Or do you just tackle things as they come at you?

Cassandra 56:52
Yeah, it's pretty much like situational. What's kind of bugs me the most gets attention.

Scott Benner 57:05
Whatever's whatever flies flying in your face? That's the one you swat at. Yeah, gotcha. Any depression?

Cassandra 57:16
Um, I had that. But it was when my blood sugar was way burst. And I think it was also caused by the high sugars.

Scott Benner 57:29
Okay, so you but so

Cassandra 57:31
I'm also getting I'm becoming a different person if my sugars are high. I really noticed this now,

Scott Benner 57:41
right? Angry short tempered, whatever. Yeah.

Cassandra 57:45
And I'm also getting a different person. If I'm going low. Then my boyfriend is like here food. Don't talk to me.

Scott Benner 57:56
You get you get nasty when you're low.

Cassandra 57:59
Oh, yeah. Like, really? That every one else is like the enemy. And then the group one. And everyone is mean. And then you just need to shuffle food.

Scott Benner 58:15
Wow, you get defensive when you're low. Yeah. It's interesting. Does it happen out of nowhere or does it come on slowly?

Cassandra 58:22
No, it's really like, super quick onset. And then once I get like, the coke in me or whatever I drink, it gets better.

Scott Benner 58:36
It's interesting.

Cassandra 58:37
Then I put on a sweet smile and say I'm sorry, I have a flow. And then things are good again,

Scott Benner 58:44
right? Because you don't have him locked in with a marriage. Right? So he could just blow Yeah. Oh, sorry.

Cassandra 58:51
Now you're good. All my life secrets.

Scott Benner 58:53
Yeah. Cassandra, does he get the dog or do you get the dog if we split up? What do you think? Oh,

Cassandra 59:00
it will be me because I bought the dog in the first place and brought it into the relationship. I see. Technically my dog

Scott Benner 59:09
financially you are responsible for the dog. My my my only financially?

Cassandra 59:13
Oh, my my boyfriend always points this out. Especially for the evening work. If your doc

Scott Benner 59:22
Cassandra, you're making me laugh because the other morning, Kelly and I woke up and we just didn't have anywhere to be or anything to do. And one of our dogs still had to go out and we I was planning on sleeping an extra hour and she's like, Yeah, thought the dog out and I got out of bed. And as I got out of bed, I said and I want to quote myself here because 100 Because I want to be sure people know exactly what I said. I said I told you not to get that same dog. And and I love the dog. I swear to you. I do He's really amazing. He's 15 years old. We take immaculate care of him. He's a, he's a, he's a terrific dog. But in that moment, all I could think was, I warned against this, and no one listened to me. 15 years ago, I knew that one day this was gonna happen to me. And here we are. And it's not just one time, obviously. But that's hilarious response.

Cassandra 1:00:20
But it's pretty much how it works here.

Scott Benner 1:00:23
Yeah, of course, I heard what you were saying you were like, hey, this, this bomb doesn't help me with the dog. I heard it. I know what you

Cassandra 1:00:28
know, that's just like in the critical situations, the responsibility falls on my son.

Scott Benner 1:00:36
in critical situations, the responsibility for

Cassandra 1:00:39
like, if if it will be an advantage to stay inside and responsible for?

Scott Benner 1:00:49
Okay, I say my last question for you is not fair because you haven't had time to think of it? Or maybe you have maybe this is something you've thought about a million times. And this is why I'm asking you, knowing that a lot of people with diabetes, you're gonna hear this. If I mean, if I give you a forum to talk to them about their care, can you? Can you articulate to them? Why it's so important? I mean, not that your story doesn't, but how, you know, I mean, just managing your blood sugars and keeping spikes away and keeping away scary lows? And, and I mean, I guess I'm asking you to tell them, like what a difference it would have maybe likely made in your life?

Cassandra 1:01:36
Yeah, that's a good question. You know, I guess it goes pretty much into the philosophy of your podcast. Because if once your settings are dialed in, and you have a stable base rate and two nights, and you Pre-Bolus, it's really not that much of an effort once it's dialed in. But you just have to make this leap and make the effort to dial everything in and then I mean, but on a day to day basis, it's not that much of an effort to adapt a carb ratio or Nyasa. It really isn't.

Scott Benner 1:02:25
Yeah, it's it's settings Pre-Bolus thing, understanding the different impacts of your meals addressing high blood sugars without waiting too long. That's pretty much it, right? Yeah. Yeah. Yeah, I joke with people all the time. Like, somehow the podcast has 700 episodes, but it could be 12 minutes long. You know what I mean? Like, it wouldn't answer all your questions. But if I said exactly what I needed to say very succinctly, that's what I would tell, you know,

Cassandra 1:02:53
for the technical part, you're right, yeah. But I really enjoy also the stories of the people and the community. I mean, even if I like if I think like, yeah, a type two podcast, but what will I get from it? It's still very interesting. Interesting to hear the stories and I always learned something.

Scott Benner 1:03:17
I'm glad I do, too. I learned something every day. i i record way more than you guys probably think I do. And it's, every day in my life, I talked to somebody who's either found their way through something searching for something, you know, they're lost, or and you can kind of try to help them where they figured something out, you can help them share it with somebody else. It's a It's I have the best job. I really do. And I'm really glad that you enjoy it like that. You know, I'm looking here. What I'm looking at this link, I've been wondering all day, if if Xolair could help with rheumatoid arthritis,

Cassandra 1:04:05
no impact on it. So because it's not an immunosuppressant per se

Scott Benner 1:04:12
okay. I didn't listen. That was like literally I know nothing, but I just kept wondering, I found this one thing.

Cassandra 1:04:20
But I mean, do you want to know a fun fact about solar and the other drug for the air? I take? Both made from Chinese hamster ovary.

Scott Benner 1:04:36
Whoa, whoa, whoa, stop a second. Are you trying to name the pot? Are you trying to name your episode? Hold on a second. Xolair Chinese hamster ovaries. All right. Well, this is gonna be Google for the ages. I must be the first person that Google this almost like I

just clean up my terrible spelling. And let's see Solair Chinese hamster ovarian cells, a recombinant human through monoclonal antibody, that's okay, so there is a recom, accomp, recombinant humanized monoclonal antibody. There's words we all know now since COVID, that selectively binds to a human IGE used to reduce allergic reactions. Actually, the Xolair, which is the brand name, let's see, is manufactured by recombinant DNA technology in a Chinese hamster ovary cell in a Chinese hamster ovary. So that's why it's made of them or it's made in them.

Cassandra 1:06:03
I'm not quite sure from what I read, I understood that. They kind of took cells from Chinese hamster, and they ever since duplicated it. Somehow,

Scott Benner 1:06:20
Solaris produced by a Chinese hamster ovary cell suspension culture in a nutrient medium containing the antibiotic Genta myosin gahoo who give her give her read stuff like this, Cassandra and think, who figures this out, I am not helping society at all. Like like I could, in a million trees. You gave me a million years and said, Hey, these hamsters right here could help people with like asthma and like, you know, other, you know, kind of allergic reaction kind of stuff. Go figure it out. I'd be like, Listen, tell those people. They're screwed. Okay, because I am never gonna figure this out. That's insane. It really is. I hate to say that, but you really did just name your episode Chinese hamster ovary. I'm happy with that. You're gonna have to be because it's one it's gonna be called Cassandra. Wow, that's that's really crazy. Well, good for smart people. That's That's wonderful. Who the hell? And Chinese hamsters are the little?

Cassandra 1:07:28
They look cute. Yeah.

Scott Benner 1:07:29
Are they the little fat ones? I'm trying to or no. Are they the little? I can't remember. I haven't worked. You know, I worked in a pet shop as a child. Did you? I did from the time I was 13 till I was 16. Oh, wow. They almost look like Jerboas a little bit. But but not. Oh, here's the Oh, man. I say if you're buying a pet. The Chinese dwarf hamster is incredibly cute. Have you just got routinize but it's got a funny like interesting fun face. But regular Chinese hamsters. I would describe them as looking almost like lean journals.

Cassandra 1:08:05
But I actually almost wanted to become a unicorn. But maybe now it's just a Chinese hamster.

Scott Benner 1:08:11
Maybe you're just gonna become a Chinese hamster. Do you ever after the Xolair? Are you ever inclined to chew on wood?

Cassandra 1:08:21
So much? Do you are you ever

Scott Benner 1:08:23
inclined to chew on wood after you get this all there?

Cassandra 1:08:27
No, I don't think so. No, you do.

Scott Benner 1:08:30
You never want to pee in some hay or anything like that afterwards another.

Cassandra 1:08:33
No no, no. Yeah. Well, wow, that'll send you a note if it has,

Scott Benner 1:08:40
well yeah, if you find yourself starting to pile up bedding in the corner and peeing in it, please do let me know. I would love to add that to the episode. Because I can't thank you enough for doing this. You were really terrific UVA. You know, obviously some heavy stuff going on in your life and you shared it with everybody in a very light way. I thought it was terrific. What you just did.

Cassandra 1:08:59
Thank you so much for having me.

Scott Benner 1:09:01
Oh, it's my pleasure. Hold on one second. Okay. Yeah.

I want to thank Sandra for coming on the show and sharing her story. I also want to thank touched by type one of course you can find them at touched by type one.org and also on Facebook and Instagram. And last but not least, ag one from Athletic Greens head over now. Get your free one year supply of vitamin D and five free travel packs when use my link, athletic greens.com forward slash juice box. Rod said okay, so thanks for listening to the show. I hope you enjoyed it. I'll be back very soon with another episode. And I hope you go find the private Facebook group Juicebox Podcast type one diabetes on Facebook. It's a private group with over 33,000 people just like you