#1168 Chariots of Fire

Amy was diagnosed with T1 in 1982 at the age of 11; she had gastroparesis for 18 years that was fixed by gastro bypass surgery.

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Scott Benner 0:00
Hello friends and welcome to episode 1168 of the Juicebox Podcast.

Today I'll be speaking with Amy she's had type one diabetes for 41 years diagnosed in 1982. She's developed Ra, and gastroparesis. Amy's even used a stomach pacemaker to regulate her digestion. It's very interesting conversation that I think you're going to enjoy. Please don't forget 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 health care plan or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please take the time to fill out the survey AT T one D exchange.org/juicebox. You'll be helping with type one diabetes research when you complete the survey AT T one D exchange.org/juice box. When you place your first order for ag one with my link you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com.

US med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice box or call 888721151 for us the link or the number get your free benefits check it get started today with us med Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jalen, he was diagnosed with type one diabetes at 14. He's 29. Now he's going to tell you a little bit about his story. And then later at the end of this episode, you can hear my entire conversation with Jalen to hear more stories with Medtronic champions, go to Medtronic diabetes.com/juicebox or search the hashtag Medtronic champion on your favorite social media platform. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since it's gonna let you break away from some of the CGM norms you may be accustomed to no more weekly or bi weekly hassles of sensor changes. Never again, will you be able to accidentally bump your sensor off. You won't have to carry around CGM supplies and worrying about your adhesive lasting. Well, that's the thing of the past. Ever since cgm.com/juicebox. Hi,

Amy 2:59
I'm Amy. I'm 53 years old type one diabetic had diabetes for 41 years. So got type one when I was 11. I'll save you the math. Thank you. I got it in sixth grade back when technology didn't exist, peeing on strips and test tubes and the nurses bathroom. In elementary school. My diagnosis story is typical. So I'm not going to spend too much time on it. But peeing a lot for weeks. Lost a lot of weight that I didn't have to lose thirsty constantly got up five times during a movie. My parents still talk about it to go to the bathroom. What movie chariots of fire so far? Thank you. Yep, still don't like the movie to this day, kind of traumatized by it. Then I got what we thought was the stomach bug. But was DKA started throwing up and my mom took me to the pediatrician and they said she has diabetes. Never heard of diabetes before. are barely. And they said you need to get to children's hospital right now. Take her in Boston 41 years ago. Yeah. 1982. Jesus. Yeah. So when I got to the hospital, my blood sugar was 800. I don't know what my a one C was. I don't remember ever hearing about a one C at all. I'm not sure what was going on back then. But I was in the ICU for three days. And then in the hospital for 10. Overall and training, giving an injection in an orange. That's how I learned my dad learned to but no one's ever given me.

Scott Benner 4:43
No one ever actually ever really got close to you with it. I'm just sitting here thinking if you took an 18 year old person right now and said, hey, something happened to Kim and 90 or AMI in 1982. I think they'd go win. Like, don't you think that would seem to me like 100 years ago? Go to them. Yes.

Amy 5:01
Yeah, it does, especially with where we are now with diabetes and technology and like people I work with that weren't born. When I got diabetes, yeah,

Scott Benner 5:10
there's a lot there. So okay, there is. Let me ask you a couple of questions. Do your parents still like Chariots of Fire? Do they not like it either?

Amy 5:18
Ah, my job likes it. He's the one that took me. He likes it.

Scott Benner 5:23
He's a boy. He's like, I'm not associating this with anything.

Amy 5:26
It's like, I don't care. That's your disease. that I like.

Scott Benner 5:30
Yeah, when Arden was diagnosed, there were like, this is gonna sound ridiculous to people but there were DVD players portable DVD players were a big deal. Yeah, they people are like, what like, so you could it was like a Walkman. But for a movie. I don't know how to explain that. Kelly had like, we brought like a handful of DVDs with us to the to the hospital and with this DVD player in it, but Arden watched this same movie over and over and over again. And he hates the movie now. Like she associates it with Arden getting diabetes. Oh, yeah. But Arden really likes it.

Amy 6:09
Oh, I get I have Yeah, I I will never see chariots of fire again. But well,

Scott Benner 6:14
let me ask a couple of questions. Yeah. Is there any diabetes in your family? Besides you type one down the lines? So

Amy 6:22
a couple of seconds, a second cousin and their child had type one.

Scott Benner 6:27
Is this before you or after you? One

Amy 6:31
is the mother of my second cousin once removed before me, the other child after me she was one and a half. Okay. She was

Scott Benner 6:42
diagnosed later. Yeah, what is you know, just kind of briefly because I feel like we know at this point, but what's diabetes 41 years ago? Like what's your day to day grind?

Amy 6:53
It's exchanges not carb counting. It's Hey, you can have this many breads, this many proteins, this many vegetables, whatever. You can't eat sweets. You can have a dish of ice cream once a month. Basically, you can't have juice. It was a lot of restriction and NPH and regular pork insulin and was allergic eventually to that got hives for a long time had to switch to beef and then luckily humor log but yeah, there's a lot of injections but no rhyme or reason. Basically, like you eat at this time you give an injection, three injections a day, three meals a day some snacks.

Scott Benner 7:36
It's funny to hear you talk about insulin like it's bully on the chicken or the

Amy 7:41
Yeah, exactly. It was like you're allergic to the poor. Okay, here's the beef. And no, that's not gonna work. I didn't have a problem with food or weight or anything. But when somebody tells you, you can't eat anything, but this at this time, I quickly got a problem with food and snuck it. So hi, mom and dad, hope you're gonna listen to this. This is great. But lots of junk in snuck it in my room through my teen years trips to McDonald's, etc. That bad eating continued in the sneaky way. All through college until I got my first complication. So well.

Scott Benner 8:22
Okay, so Did it cause a lifelong problem with food? Yes, normally no.

Amy 8:29
So I wasn't overweight at all until I think a couple of years after diagnosis. So 14 stopped doing sports teams and start kept eating and just was on a million different diets Weight Watchers etc. I don't have to list them. They're all like the Go twos and hat was like obsessed with not in a like my eating patterns weren't great because I snuck food but not in a like eating disorder way. Although the eating itself was probably disordered but no clinical, whatever. I just snuck food and ate it always gave medicine never skipped my insulin but didn't always 100% accurately write down what your urine tests or wow, I never wrote that down, but didn't write down what my urine strips said all the time and or ventually finger sticks when we started testing with testing with finger sticks. I fudge the numbers when I had to go to my endocrinologist and show them the log book, which looked like a checkbook and you had to write all these numbers which I would do the night before. So do you think

Scott Benner 9:42
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Speaker 1 11:15
I was going straight into high school. So it was a summer heading into high school

Scott Benner 11:19
was that particularly difficult,

Speaker 1 11:21
unimaginable, you know, I missed my entire summer. So I went to I was going to a brand new school, I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist. So I was traveling over an hour to the nearest endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown. Did

Scott Benner 11:49
you try to explain to people or did you find it easier just to stay private?

Speaker 1 11:53
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just kept it to myself didn't really talk about it. Did you

Scott Benner 12:09
eventually find people in real life that you could confide in. I

Speaker 1 12:13
never really got the experience until after getting to college. And then once I graduated college, it's all I see. You know, you can easily search Medtronic champions, you see people that pop up and you're like, wow, look at all this content. And I think that's something that motivates me started embracing more. You know how I live with type one diabetes? To hear

Scott Benner 12:34
Jay Lynn's entire conversation stay till the very end. Medtronic diabetes.com/juice box to hear more stories from the Medtronic champion community.

Amy 12:45
Well, I wasn't allowed to eat anything. Yeah. So

Scott Benner 12:47
are you like, being like, I'll show you like, subconsciously I'll eat whatever I want? Or was there a real loss of the foods that you enjoy?

Amy 12:55
There was a loss of the food? Well, my mom and dad never had junk food in the house, really. So it wasn't a problem until it was right. So I guess it was like, I'm not allowed to eat this. My mom's against me eating this too. She doesn't make sweets, etc. So I'm going to eat it in my free time.

Scott Benner 13:11
Okay. In my free time, which when you're a kid is plentiful

Amy 13:15
is exactly wish I had that free time now I know. But, yeah, so went to college, four ish years. So let's say four and a half. We had an extra semester in there. didn't tell anybody I had type one for for the whole time. never told anyone. The first person I told was my first husband. My ex husband is the first person I ever told after we had been dating but I kept it a secret didn't tell my roommate. I have to say I don't remember testing. And this is like shameful. For four and a half years. I didn't feel low. I didn't feel high. I was just eating. Drinking some not like a huge problem, but middle of the night pizzas. Lots of subs. Yeah,

Scott Benner 14:06
yeah. Is that not testing thing? What was the testing technology like at that point was that I

Amy 14:12
can't remember if it was fingerstick or the urine strips.

Scott Benner 14:16
So I'm gonna do a little round guessing so if you're 11 and 82

Amy 14:20
Yeah, I went to college and ADA two through 92

Scott Benner 14:24
Yeah, there had to have been meters at that point.

Amy 14:27
And I might have had one but to tell you never got low blood sugar and four and a half years compared to what I deal with now is shocking to myself.

Scott Benner 14:36
Well, you never got low because you probably never had enough insulin Right? Correct. Yeah. When did you switch to a faster acting insulin like did you go to lentil Ultra lentil Did you know no Humalog you wouldn't write from beef and then to Oh, no,

Amy 14:52
no beef and pork to your regular on mph. This? Yeah, I had Did mph irregular originally and then I had Lantis. And I had like, I forgot something during the day before the pump and then I started a pump in 2004 2000 afford

Scott Benner 15:12
me start pumping. Medtronic, you Yeah, there wasn't another option?

Amy 15:18
No. Well, and it was also the best one at the time. Yeah,

Scott Benner 15:23
no, no, that's what their salespeople told everybody. Yep. Question. Yeah. What was the management like, at the doctor's office? Were you going to a yearly quarterly semi annual you are and what did they test your blood? Like? How do they tell you? You're doing great, you're not doing great. Like, how does that get measured? So

Amy 15:43
I went to the endocrinologist or regular Yeah, I went to Jocelyn and Boston, but I went to the endocrinologist. I never remember hearing about an agency, honestly, until the mid to the early 2000s. But it was blood it was oh, what are your blood sugars? And I would either give them a download at that point, I think you could stick it into your computer, which you still can do but and then the pump and everything, but they were like, oh, okay, you're doing okay until I got my first of two bad complications in college. And that so made me wise up. I'm

Scott Benner 16:21
gonna get to that in just a second. But you call it shameful a minute ago and I thought, I don't know. But I'm trying to

Amy 16:26
net will make me cry at some point during this podcast because

Scott Benner 16:29
prior good because just great to see you know, we'll be weeping together on a freakin podcast. And I got a note last night. I was up work late working. And I did like sometimes I jumped on the Facebook group. And I'm just like, look, I'm here working. I'm doing like this mind numbing thing. If you guys want to ask me a question, go ahead, which is a very seems to be a very popular thing on the Facebook group. And one of the people said, I just want to tell you that my kid was in the backseat. So I started crying during an episode that went live yesterday. It was one of the myth episodes, and somebody just had shared something horrible. And as I'm reading it, I was just like, I hate me cry. And I said that I was like doing it with Jenny. And I was like, Jenny, don't cry. Don't cry, Scott, don't cry. And like I'm doing that. Well. Apparently, this lady's little kid in the back seats. Like don't cry, Scott. Oh, how cute. I don't know. I think they were mocking me. Don't you think they're like, Look at this. No.

Amy 17:23
I don't know. My kid mocks me and she's 13. So it's her job. But I asked her for tricks to not make myself cry today. And she didn't have any. Well,

Scott Benner 17:32
so my question is, is like, is it really shameful? Or is it just the best you were doing? Or did you know there was more you're supposed to be doing? And you were just like, oh,

Amy 17:40
I there was more I could have done. diabetes

Scott Benner 17:43
comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US med has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us mid you open up the email to big button that says click here to reorder. And you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives, we click on a link and the next thing you know your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer. And we're done. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and the Dexcom G seven. They accept Medicare nationwide, over 800 private insurers. And all you have to do to get started is call 888-721-1514 or go to my link us med.com/juicebox using that number or my link helps to support the production of the Juicebox Podcast.

Amy 19:05
I didn't take care of I guess I didn't take it seriously. I didn't think oh, like retinopathy exists. I was like, Oh, I might lose a leg a toe a foot like not that that's not serious. But all I heard of is that and dialysis like my biggest fear, which I'm not going to I don't have but those were the things that were you know, they tell you and as a

Scott Benner 19:26
kid you remember thinking I could I get 10 toes I could give one away is like was no

Amy 19:31
I didn't even think about it honestly. Ever. But they told you I mean yeah, and the pink the diabetes training book that you got that had the Pink Panther.

Scott Benner 19:43
Are you gonna say the Pink Panther book? Yeah, sure

Amy 19:45
was. That's what they had.

Scott Benner 19:49
I am although I just saw somebody just had it recently online. They're like, we just got this I'm like, Oh my God. They're giving that to people still.

Amy 19:55
Oh my god. That's should be Yeah, that's outdated. Quite

Scott Benner 19:58
nothing like you know Using a cartoon character on a book for people that no one has any connection to whatsoever, they're like, what is that? Like Pepto Bismol? Man? You don't I mean,

Amy 20:07
nobody alive now, like, knows who that was.

Scott Benner 20:11
I don't know that people know what Pepto Bismol is. What do you think of that? No,

Amy 20:14
I do, because my mother in law has to use it a lot. So anyway,

Scott Benner 20:20
there's got to be something else. So anyway, oversharing I'll decide when you're over sharing. You're doing fine so far. I listen. There's something wrong with me. I got up this morning, and I read this. What are some of the themes you hope to cover on your episode? Type one for over 40 years. And then you describe some of your issues. And I was like, Oh, this is gonna be really interesting. I think most people would go, Oh, this is horrible. And I was just like, oh, I can't wait to talk to her. Oh,

Amy 20:45
thank God, I should probably get to those right. I'm probably like I said, I oversharing kind of circle the drain. But undiagnosed ADHD.

Scott Benner 20:54
I don't know what you're talking about. I never know what people are talking about when they say that. They're like, Oh, I'm all over the place. And like you're not we just had a very cogent conversation. We understand your background. Now. You're not all over the place. Don't worry. I think some people have an expectation. Yeah, that conversation supposed to move along? Like a bullet point list? Yes.

Amy 21:14
Which I made for myself. But yeah, okay, good.

Scott Benner 21:19
I think of conversation like ping pong. That makes sense. I say something, then you say something, and then I go, Oh, that was interesting. And then I said something for that. And I don't care where it goes to, to be perfectly honest. I think when you're listening to it, it's actually more natural to listen to two people have their thought and continue talking than it is to hear people like in a stilted way. Say, Well, we are now done talking about point number three. I'm now going to speak about

Amy 21:46
way too many of those types of meetings at the pod cast is interesting. So to go to.

Scott Benner 21:52
Okay, so you feel ashamed now? Yeah. And I'm sorry. I don't know if it's an ashamed but what is it? How do you feel about what happened? You mad?

Amy 22:03
You're gonna make me cry. But these weren't. These are my fault that I don't have a stomach anymore. And I have written up with you too.

Scott Benner 22:12
Do you think it's your fault? Do you really think it's your fault, though? Sure. But what did you know? I mean, you got it when you were 11. In I mean, in 82. Nobody knows anything. Right there. They're still telling you like, here. Luckily, we have this you can take it and this will keep you alive. But they were probably in 82. You're they're probably still thinking shortened lifespan for people with type one. Sure. Yep. Yeah, so they're not

Amy 22:38
my dad also said, by the time you're 16, they're going to find a cure. Oh,

Scott Benner 22:43
they did that one too? Yeah. Oh, sure. In the hospital. Oh, see? This? Okay, me? You keep crying if you have to. I'm gonna keep Oh, no, I'm

Amy 22:53
sorry. I'm already crying. But I know I could have done better. So

Scott Benner 22:59
it makes this a challenge. I don't think I can get you to cry one more time.

Amy 23:03
No, no. 100% can for sure. Yeah.

Scott Benner 23:06
What I was gonna say is that, you know, I hold I make this statement a lot on the podcast to doctors, that when you say something to somebody like that, you run the risk of it going one of two ways. My dad said it. Yeah. But but it's, he probably says it too. So you will feel hopeful. Correct.

Amy 23:25
But and honestly, who knew at that point? Right, right.

Scott Benner 23:28
But what if instead, it makes you feel like, oh, only five years? I don't have to look that close. And it's almost over? Correct. And then those five years turn into 10 years? And then before you know it, you're crying on a podcast? I think that didn't exist in 1982.

Amy 23:44
Exactly. And neither did computers when I first went to college. But I

Scott Benner 23:47
tell people all the time, I make a living with a bunch of stuff that did not exist when I was in high school. Yep. So. But anyway, my point is, they started you in a hole.

Amy 23:59
You don't I mean, correct. And I am not saying my parents didn't help manage it. But I mean, they did. Because I lived with them. And they were responsible for what I ate. But I'm the one that gave my medicine, always. I'm the one that did my blood sugar. And then in college, I'm the one that ate and sometimes drink.

Scott Benner 24:18
But you were just shooting a pre determined amount of insulin, right?

Amy 24:23
Correct. Until eventually a sliding scale. But that didn't come till much later, and then maybe counting carbs and that I had already had diabetes for such a long time then that the first complication was already there. You

Scott Benner 24:38
believe me? So my point is, is that I have no other people who live through beef and pork insulin, and all the way. Yeah, and they don't have complications. But maybe what they had was a doctor who gave them the right proportion of insulin to use. Maybe, or are you saying that you ate so much more over what you were telling people you ate that that couldn't have Get enough insulin. Yes. All right.

Amy 25:02
I wasn't telling anyone what I eat. Are

Scott Benner 25:05
you disappointed or sad? I'm both. Who are you disappointed with? Besides yourself? Anyone else? No, no. And sad, because

Amy 25:22
I don't know. I have a lot of medical problems that I wouldn't have. If I didn't blow off a lot of years. Like a lot, like half the time I had diabetes.

Scott Benner 25:38
Do you live with this? Like, still daily? Or is it just coming up? Because we're talking about No, it's

Amy 25:44
coming up because we're talking. And I also go to therapy. But yeah, and also, I have been so so so lucky. Number one great insurance, and, like a life changing surgery with for my gastroparesis, and I have really good retina doctor. So I'm really, really, really lucky. But I've spent a lot of time on medicines, stuff like that was talking

Scott Benner 26:09
to a friend yesterday, like a grown human being with like, you know, jobs and like established lives and everything, trying to get a very simple medication her. Like, they won't give it to her. She's like, I thought I always I always thought I had good insurance. And please don't make 1000 calls. Yeah, but you know what it was? It's just small family. It's just her her husband and one child. They were never really sick people. And I said, you this is the first time you tried to use your insurance. And she's like, kind of is and I was like, Yeah, I'm like, trust me. If you would have like, given birth to Arden 19 years ago, you would have figured out very quickly if you had good insurance, and you would have done something about it. If you could have that I take your point about how lucky you already have it. So okay. Yeah. What's the first complication? It came in college, but that's fair.

Amy 26:53
Yeah. I went to Syracuse, and I was a senior and in the shower, and all of a sudden, I saw a huge black circle in my eye, which I thought was a bug. Never knew what retinopathy was, got out of the shower, tried to get it out of my eye, and realized it was in like, behind the eye, whatever. Yeah, I called my parents and they called my doctor and I flew home and went to a really good retina specialist at NASA pioneer, who I still see to this day that was in 1991. And he saved my eyes and he's the reason I can see I had lots of laser surgery and both and then a couple years after that, I had a vitrectomy in the left eye which is taking the vitreous part of like the jelly partier i out. I had that, but knock on wood. The last leezar I had was in the 90s and I still see the same retinas specialist who's in his 80s and I begged him every year not to ever ever retire. But he saved my eyes to

Scott Benner 27:59
thoughts. That was nine just nine years with diabetes.

Amy 28:04
Yeah, yeah. High blood sugar for nine years. Yeah.

Scott Benner 28:07
And when you said the the procedure, and you said it's when they take the jelly out. I want everyone to know that inside of my head of voice you know the sea turtles and Finding Nemo. Yep. There's a voice in my head that when did jellies oh my god, that a different voice that said, What the hell is wrong with you? Sorry. That's okay. Yeah, the voice that was what the hell was wrong with me? That was actually me talking to myself. But so, wow. I can't imagine how scary that is to be in college and have that happen. It

Amy 28:47
was Yeah. Luckily, I had access to really good doctors and got home fast and went back to college. And I remember having to go to like an interim retina specialist in middle of nowhere, Syracuse.

Scott Benner 29:02
Yeah. It's not even even have

Amy 29:05
a mall. Yeah. I was a senior. Yeah. So you're the forest. 100% Yeah, it was not great. I think I had to take a bus and then get a shot might Yeah, it was a good time. But other than cataract surgery, and yes, I sound like I'm my grandmother. Cataract surgery in both eyes. A couple years ago. Knock on wood. I still see my retinas specialist once or twice a year.

Scott Benner 29:31
And your visions. Okay.

Amy 29:32
It's sometimes it's 2020 or 2025. And yes. Which is awesome to me. Yeah.

Scott Benner 29:41
Do you have other complications besides Yes, yes. You're pretty systemness Yeah. What else do you have? Well,

Amy 29:48
I have another autoimmune disease. Oh, but not in another company. I have rheumatoid arthritis that I got four years ago.

Scott Benner 29:56
Oh, like it The holidays are gonna come out. was like a New Year's thing.

Amy 30:02
All right in January. Yeah. I didn't know why are we good? Yes. One, one weekend. I'm like, my hands look really like bent and they hurt and I thought, oh crap, I have neuropathy in my hands. I didn't, I had tests, but it was literally like, one day I was fine. And then all of a sudden, my hand started hurting a lot went to get a lot of tests, and I tested. I forget what the name of that, but it was negative on the tests, the blood tests came up negative or some

Scott Benner 30:36
people talk about having ra but with negative tests. Yes. So

Amy 30:40
I had to get an MRI. And I had it and, you know, they mentioned all the scary medicine that you have to take that you're gonna lose a face. You're not gonna have this you're gonna get like, whatever. And so you're I'm like, I don't want to take any of these auto like these immunosuppressants, but I am taking humera I

Scott Benner 30:58
was gonna say you're doing an injectable? Yep. Once weekly, right? Yep. Yeah, I know that because that's the commercial once weekly. humera. Oh, yeah.

Amy 31:07
And when you hear the commercial, like, you could get lymphoma. You could lose it. Like all this stuff. My mom's I don't take that. I'm like, I have to. Yeah, I tried it again. I have to. But if I keep exercising and stuff, it helps so much. That it doesn't get worse. And right now knock on wood. It's Steve. It's pretty stable.

Scott Benner 31:28
Your hands like curling up?

Amy 31:30
Are they getting along? Yeah, yeah. Yeah. Yep. So it looks like osteoarthritis on the outside. But that's no, and I only have it in my hands for now. Is

Scott Benner 31:41
the humera help you with anything else? No.

Amy 31:45
And every time I get sick more, or if you have like a cold or anything, you can't take it. Or if you have surgery, you can't take it weakens

Scott Benner 31:54
your immune system. Yes, right. Yep. I always think like, everybody's always like complaining. Not complaining. Like there's this, you know, worldwide attempt to like, impact, inflammation and people.

Amy 32:08
Oh, yeah. Like, eat this diet. Yeah. anti inflammatory. Right.

Scott Benner 32:12
And, you know, when you read that you're like, come on, that's not gonna help me. I don't

Amy 32:17
eat mushrooms. Don't eat that don't yeah, like the Tom Brady diet. I

Scott Benner 32:21
just wonder when it's gonna be that, you know, some doctor, some scientist figures out like how much how much tiny little bit of whatever humera is, or one of those drugs is going to just turn people's like, it means that just a teensy bit. You don't mean and get rid of like some of that inflammation? I'll tell you the other day. I mean, I've been if you listen to the podcast, and I don't know if you do or not, but I do. Okay, so I've been losing weight with week over since March. Yeah, like and I'm down like 33 pounds 35. I was down 35. Well, here it is. I was down 33 pounds. And I was sitting pretty like, like stably that's like, I'm not losing any more weight. But I guess I will one day, and I get I get a little sick. And they put me on a steroid pack. And I so steroid packs, for me are terrific. Because they make first of all, I feel like Superman. And they and they also make me any excess water I have in me, I expel in the first like six hours. I'm taking it. And I am on the steroid pack. And two days later, I jumped on the scale, I've lost three pounds. And I'm like, I'm like and that's just water weight that my body should not being hold should not hold on to like, I'm not. I wasn't dehydrated, like nothing like that. I was hydrating and everything. But my body just seems to hold on to like three pounds. I

Amy 33:43
don't want to go down past that point. At that point at

Scott Benner 33:47
all. And I always think like it's a steroid pack. Like, what does that do? Like? It's like a diuretic for you. Yeah, for me, it's a diuretic. It's really interesting. I'm like, I don't know, I'm sure one day I'm gonna talk about myself so much on here that one day, somebody's just gonna send me an email, they'll be like, here's everything that's wrong with you. We figured it out. And shut up and stop talking about it if I tell you but but anyway, I always like I imagined that, like inflammation in general is something that that scientists have to be. I mean, that'd be a billion dollar product if you could just turn that down a little bit for people. But I mean, think of all the people who come on here with a you know, ADHD or they talked about you know, I'm bipolar, I have bipolar in my family and there's also a lot of autoimmune in my family. Like if you could just not you know what I mean? Just not making sure you're getting sick all the time, but then a little bit, just a little, you can have some I'm not sure if that's how like, you know, medicines work but in my mind, that's what they should be trying. Anyway, so I eyes are in college 22 you do you're doing and do what you do, when does the gastroparesis come.

Amy 34:56
So, in the late Eat 90 So I'm in my late 20s. I'm married, not to my current husband, but I was married. And I was starting to get nauseous like all the time and just a side note. I have such a phobia to throwing up like such a phobia. Arden doesn't like it either. Oh my god. I mean, does anyone like it? No, but I got thrown up on at Disney World when I was a kid. And ever since I have a phobia about being sick being around sick people like hate it by Goofy.

Scott Benner 35:32
Goofy who grew up on you know,

Amy 35:34
I was at a luau. At the Polynesian, which was one of two hotels that existed. So yep, long time ago, and a kid threw up on my back.

Scott Benner 35:43
Oh, really? Yeah, like a stranger. Yeah,

Amy 35:48
so I literally have such a phobia and then end up with a really bad complication I'd never heard of that makes you nauseous every single day. So I didn't know that. At first, I had all the tests, the stomach tests. And then the infamous gastric emptying study, which I've had to have the first one, I laid on steel table with the camera over me and a Walkman in my ears, because that's all that existed for four and a half hours. That's how long it took for the egg whites with the dye on it or the oatmeal, I forget which one to digest. And they Yeah, it was a good time. And they said you have gastroparesis, etc, etc. And I started trying all this different medicine, which there's nothing great. Honestly, I have to tell you and ended up being on regulan not great for 18 years, I was nauseous every single day for over 18 years. Some days. Bad. Some days, not that bad. I worked still work through this whole time but ended up having to get a work at home accommodation, which wasn't popular back then. Because it was easier to manage at home when I was nauseous. Some days it was really bad. So I'd need to take Zofran and composition, but those would make you tired. So it wasn't great. I had to go to the ER a couple times for IVs of those when it was very bad. But luckily I had it way less terrible. I guess that's an improper phrasing of that. But there's I went to a motility disorder support group once where most of the people couldn't work. They were on TPN like feeding tubes. Oh, Dr throwing up all the time. And I'm like, so I was like, Okay, I'm not as bad as that, like, I'm okay, whatever. But I still felt awful. In the early 2000s. I heard about mini med Medtronic mini bed it had this FDA or sorry, this humanitary hue man Attarian device called a gastric neurostimulator, which is basically a stomach pacemaker. But it wasn't approved by the FDA. Because I don't know it wasn't and they could put it in etc. But it took two years of begging meetings, people present not me, but people presenting to the board of directors at Beth Israel and Boston. And finally I got a stomach pacemaker in 2001, I was the first one to get it in Boston, it helped because it would send electrical impulses to my stomach and make the food digest better than it was instead of just sitting there all the time. So it helped to a point. And I would say over from 2001 till 2015. I had it adjusted about 100 times, which means like they put a little looks like a circle, I don't know the official thing over you and they turn the battery, they turn the settings up. So it moves faster. And then eventually the battery runs out and five to seven years you have to get it replaced, which I had to do once

Scott Benner 39:04
you know me, you're the first person who's ever brought this up on the podcast. Like I know I'm aware of it because Jenny knows somebody who's had one. Yeah, and that's why I so I've had private conversations about it, but no one's ever I kept. I have to be honest with you. I just kept waiting. I was like someone's gonna bring it up eventually, you know? Yeah, sorry. It's you.

Amy 39:28
That's fine. Wanted to be on here because yeah, I haven't heard anyone talk about it. But admittedly, I haven't listened to every What do you

Scott Benner 39:36
mean? We're done? Every one. Almost I lovingly made these 1000 podcasts for you and you don't have the decency? No, I'm just giving it back to me.

Amy 39:49
So, so I was kind of existing with still being nauseous still being on tons of regulan. You had to made up a lot. It made you thirst tired there. See, whatever. And every time I went to the doctor, they're like, you know, you really need to cut back on that. It has an a blackbox warning with the FDA because it can cause bad permanent side effects like tardive dyskinesia, which is like neurological tics and things like that, that will not go away. Even if you stop taking them at

Scott Benner 40:24
will they tell me again, which med does that regulan and that's part of the for your pain in your stomach.

Amy 40:31
Well, it's not it was for the nausea. And it also helped with the motility okay, it helped move things along it but it made you tired, it made you go to the bathroom all the time. I just thought that was me. Go into the bathroom.

Scott Benner 40:46
Take the sidebar for a second tell people look Astro priestesses in case they don't know.

Amy 40:50
So it's a motility disorder where the nerves in your stomach or damage so food sits in your stomach and doesn't pass through like it normally should. It sits there and you get nauseous from it sitting there. And then it will digest eventually, but in my case, not normally. Yeah. So things with higher fat, etc, or lots of fiber would make would take even longer, I'd spike blood sugar, like I'd be low and then I'd be 400 even with like, back in the day, dual wave Bolus, etc.

Scott Benner 41:30
digesting this. So couple things here for people so we can kind of speed everybody up. First thing is, is back then when a doctor is saying to me, Hey, you know, you don't want to lose a toe. You know, what they're saying is like, you could have nerve and you know, you know, you know what it is when you can't feel your toes, that's nerve damage. No one ever says to you, there's nerves in your stomach too, by the way, helps digest food, those could get hit instead. Or you know, like, that's not the kind of stuff that anybody thinks about but that's exactly what this is. This is just a it's just the nerves not carrying the, the signal telling your stomach like make squishy squishy up the food and make it into poop. Like it's just that that literally is not happening. So they tried to give you this pacemaker to like stimulate, stimulate. It helped. You're saying but not it wasn't terrific. Not

Amy 42:18
enough. I was still like, Okay, I'm working. But I'm existing like, at this point, I'm married to my husband, Dave and love my life and have a daughter who we adopted at birth. I still like I couldn't do a lot of stuff. I couldn't go out. I had to cancel at the last minute because sometimes it was like overwhelmingly nauseous. So I'm like What else exists? I've tried everything compounded drugs in Canada like everything, Canadians. Someone said Botox in the stomach never tried it. I guess it could help but never I don't see how but then never became a thing. So I started Googling as we do. And because I found out that people could have gastric bypasses sometimes and it would treat the gastroparesis, and it could help or make it worse. So that didn't seem great. But I also heard of an acid reflux med. I mean, sorry, surgery they were doing in Boston, because they advertised and I went there. And at this point I was, I would say obese, but not like morbidly obese but a good size. Let's just say I went to the hospital and talked about the acid reflux surgery and they said to me, Well, you have gastroparesis. We can't do the surgery on you. And obviously you're not malnourished, so there's nothing we can do. Oh, thanks. Thanks. Appreciate it. Yeah, you're on weightwatchers. Like you're not starving, so that there's nothing we could do. Anything we could do is drastic. So

Scott Benner 43:53
I've let me ask a couple questions. Yeah. Has your weight always been an issue? Or did it start at a certain time? It started when

Amy 44:01
I was 14, after like, sneaking the food, and then I was on some kind of diet. And my whole life after that. Well, I always was,

Scott Benner 44:13
your parents don't notice they think you're eating one thing but you're gaining weight. They

Amy 44:17
knew I was gaining weight.

Scott Benner 44:18
But did they know why?

Amy 44:23
Not specifically until now. Oh, okay. That's okay. I gave him a heads up.

Scott Benner 44:28
It's fine. Okay. I was gonna say like giving you're obviously getting more calorie somewhere. But then I go back into my mind to the mid 80s. And I don't know how much people even understood about nutrition to be perfectly honest. I know that sounds crazy. No,

Amy 44:39
I get it because we didn't read labels for like, oh, a piece of wheat bread is to bread exchanges or whatever. So yeah.

Scott Benner 44:46
So you know, as processed foods are becoming more and more popular. There's a whole generation of people there who just think of food is like, you know, apples and simplicity and you know, like because that's how they grew up with their foods were simple and not overpriced. testing everything and then they start introducing all this into the world. And it's really thought of as like a savior like, Oh, no one's gonna starve. Look what we figured out how to do you know, genuinely people didn't know how bad it was for you. I've never I have no remembrances of my mom saying, like, here's bad food that I've bought for you. Like, like, you know, I mean, like,

Amy 45:20
yeah, we weren't allowed to have junk food in my house. A dessert was like, maybe homemade pudding, but barely ever. It was like fruit.

Scott Benner 45:27
Homemade pudding sounds horrible.

Amy 45:31
Mom, it really wasn't. But it can be. We add fruit and then even Halloween candy like Halloween? Not fun for a diabetic in the 80s. I'll tell you that. So I didn't like hello. I still don't.

Scott Benner 45:45
So your weight just continues? Yeah,

Amy 45:48
I mean, I'm on a cycle of losing weight, gaining weight. Like when I went on the pump. I gained 12 pounds in the first week. Because, like what I heard Jenny say the other day is like you're probably paying out some of your calories because your blood sugar is out of control. Yeah. And then it rained. And I'm like, How did I gain 12 pounds in a week? Like, I'm doing good. And, you know, so

Scott Benner 46:08
I was on your on the DPA diet. You're you're not on purpose. Not on purpose. But yeah. Oh, yeah.

Amy 46:15
Yeah, for sure. Hold

Scott Benner 46:17
on. I have a lot of there's a lot going on here. I'm trying to bring it all together. Be nice. Sorry. I'm

Amy 46:24
taking too long like we might be at a time soon. Thank

Scott Benner 46:26
you. Amy, stop it. I make a podcast. What else do you think I have going on today?

Amy 46:33
Well, you usually you're popular. I booked this last October. Well, my popular.

Scott Benner 46:39
The waiting list is extraordinary. If you signed up today in September, I think you could get a date in March. But that's because I've been holding the dates back. I'm about to open the floodgates online and let people know. But I'm actually going to do something that I haven't done before. I'm actually going to like, announce that I'm taking new people on the podcast. You know, I've never done that. I've never want to have a waiting list. Yeah, I've never once on the podcast said hey, if you'd like to be on the podcast, I mean, even I never said that before. So just because I've never had a lap, you're about to get flooded. Let's see what happens. I'm interested in trying. We'll see what goes. But um, my question that I've been holding back this whole time, and then you started talking about your weight and I if I'm being honest, I thought oh, maybe this never happened but did you ever like restrict food to make your stomach feel better? Like just not eat? I

Amy 47:30
didn't restrict it but I went on special like that. I don't think they call that the gastro precice diet but basically don't eat any raw vegetables cut vegetables up very small. Everything has to be cooked. Basically drink water like literally don't eat peanut butter. Don't eat this like

Scott Benner 47:50
yeah, that that I that I I've heard of the gastroparesis diet, but like, yeah, it's a good time. It's never it doesn't it's not a fun list of foods. But did it ever occur to you like, my stomach hurts because there's food in it that won't digest? I'm just gonna fast for three days and see if I feel that never. Now why did that never hurt you?

Amy 48:08
I don't know. Because I was nauseous all the time. But sometimes still able to eat most times still able to eat right?

Scott Benner 48:16
Do you know what I'm getting at? You have a problem with food. Do you think? Yeah,

Amy 48:20
yep. Yeah, I did. Now I don't have much of a stomach. So can't really eat much took

Scott Benner 48:26
care of that. But But um, we'll get to that. Look at you. Little spoiler. Yeah. So I've had times where like, I don't feel well. And I'm like, I'm not saying nutritionally, this is a good idea or obviously sustainable. But, you know, there's times where I'm like, I don't want to go to the bathroom again. I'm just not eating.

Amy 48:44
Yeah, that never occurred to me. Okay, because I was always hungry.

Scott Benner 48:49
Give the food voice that you hear people talk, people now. Now that like we go Vinos Olympic are big for weight loss and stuff. You hear a lot of people who have trouble with food. Talk about how that drug takes away their food voice.

Amy 49:05
It does it it and I've heard a lot about it. Because since I've had bariatric surgery, a lot of the people who've had that have also also take that now. Yeah, just to stop the cravings. But for me, it slows down your digestion? Yeah,

Scott Benner 49:23
no, I thought about that. I was like, There's no way you can take that as soon as you

Amy 49:27
know, plus, I'm good. Now. But

Scott Benner 49:30
my point is that I've heard people

Amy 49:32
say it works so well. I mean, obviously, yeah, trust me. I

Scott Benner 49:36
know. It's amazing. But, but I've heard people say like, I wake up and my first thought is what am I gonna have for breakfast? As I'm making breakfast before I'm eating it. I started thinking, what am I gonna have for lunch?

Amy 49:49
And it's not like it was like that. Yeah, not anymore.

Scott Benner 49:52
The procedure stop that.

Amy 49:55
For the most part. Yeah.

Scott Benner 49:57
It's interesting. Just how psychological hoping is, well

Amy 50:01
it also shuts off for the first year to the ghrelin hormone, which is the one that says you're hungry or sends the signals to the brain. It like is turned off basically. Yeah. And then I never let any of the foods back in that I could have by this point because I had the surgery for pretty much a different reason. And I don't have another chance the surgery lead to weight loss. Yeah, I lost 75 pounds. That's crazy.

Scott Benner 50:28
How long a year. Yep, pretty

Amy 50:31
much. Yeah. And it's been eight years since I had the surgery. It's

Scott Benner 50:36
a hell of a thing to get saddled with. Like that. The food voice and and a weird relationship with eating when on top of it. You have gastroparesis, like, it just seems cruel. You don't I mean? Yep.

Amy 50:50
Yeah. And I had a lot of high blood sugar and low blood sugar spikes to with when I didn't listen to myself.

Scott Benner 51:00
I wonder if people know. I mean, if you listen to the if you've heard the Pro Tip series, I would imagine this would not be surprising to you. But you know, your blood sugar going up from food is because your food goes in your stomach and starts being digested, that whole process happens. Glucose is pulled out and sent to your blood. Insulin is the key that unlocks that cell that lets the the sugar back out of your blood. You don't have the insulin, so boom, right? But I wonder if they think well, if you eat and you have gastroparesis, then the process of digestion doesn't start so you can't Bolus like a normal like a normal person would because the insulin starts working well before the food starts impacting you.

Amy 51:41
Yes. And so when I had gastro precice at first I had or when I got the first pump after the gastroparesis. The Medtronic mini med had a dual wave Bolus and some other type of dual Bolus situation where you could give like half up front and then the rest over a period of time.

Scott Benner 52:01
There. You're showing your diabetes age. Jenny does it too sometimes she goes it's a square wave Bolus. I'll make people see other Yeah, we'll just call those extended Bolus is now on she's like, Yeah, correct. But

Amy 52:12
I don't do those because I'm on the Omni pod five who is? Oh, sponsor Oh, they

Scott Benner 52:17
are on the pod.com forward slash juice box. Get your I'm sorry.

Amy 52:23
Pavlov's dogs calm.

Scott Benner 52:24
Yeah. So yeah, any of them I could I could I swear to you, you could say a sponsors name out loud. I could do a nice tight 92nd commercial for you right now off the top of my head.

Amy 52:33
So I know I could do probably from listening to podcast, I hope literally has saved my life telling me how or maybe because I lost consciousness so many times. Oh, well, before CGM for the Dexcom. And then after the Dexcom. The CGM has alerted my husband and my dog who loves glucose.

Scott Benner 52:53
So he's just excited that sugar is being eaten.

Amy 52:57
Yes, yep. When the alarm goes off, he lays on my leg and barks for glucose.

Scott Benner 53:04
I assume everyone's dog is a boy. Because same,

Amy 53:07
same, but my dog is.

Scott Benner 53:09
What do you know why I think that no, I have this like, who would get a dog that they had to like manage a period for that sounds horrible?

Amy 53:18
No, I've heard it happen. But we always had when we had female dogs when I was a kid, we would get them spayed. So oh, wait, that takes care that it does. Unless you're a breeder and you want to breed the dog.

Scott Benner 53:29
Do you think David Spade doesn't bleed? What do you think David Spade doesn't bleed? Pre spayed. By the way. Do you know David Spade, and Kate Spade are related?

Amy 53:42
Yeah, that was his I thought he she was his sister in law. Yeah, he

Scott Benner 53:47
she was the sister in law. Yeah,

Amy 53:49
she took her like, my favorite. Yeah. Oh my gosh. I love people like calm. It's like, I shouldn't say that out loud. But yeah, that's my favorite. So

Scott Benner 53:58
that's where you hear about what happened to famous people. I get that hard hitting news. Yeah, you know, one time there was an app out that like it was about like famous people's faces or something like that. And I swear to you, Arden comes into the kitchen one day, and she goes, I give up. And I'm like, why she goes, You're in this app. Oh, my. And I was like, well, that's a mistake. First of all. Someone's made a horrible mistake, or algorithm just pulling images from the internet. And she goes, I can't believe you're in this app. I don't even remember what the app was called. But um, anyway, I've you know, as far as

Amy 54:38
people that have a podcast or something,

Scott Benner 54:40
I don't I mean, how can I listen? Let's be clear. I'm not famous. If you take me to a diabetes, you know thing, and there's 500 people in there who have type one their kids have type one. I'm George clothesline, yeah, for a couple of hours. But like you walk outside that building and you know, people would hit me with their car and not think twice It's about it. So it's so weird juxtaposition for me. But and I don't know, which I prefer actually. Being at those things is, is like exhausting. Because you're like aware that I don't know how actual famous people do it by being here but yeah, because like I saw videos of myself from like two weekends ago that I don't know were taken. Yeah,

Amy 55:24
I think they were on your site. I embrace

Scott Benner 55:27
it. I embrace, but not just that one that one I kind of thought I was being recorded but like I there's other ones where I'm like people are pointing cameras at me and I'm unaware of it. And it's weird because I don't think of myself that way. So I don't know to constantly be carrying myself like somebody might be like taking a photo of me or something. Anyway, this is way off to the point. Yeah, sorry. I should probably bring it back. Tell me. So you tried to like the belly zapper to mix? Yeah, I tried that makes. And then yeah. How do you when you end up with a surgery?

Amy 56:00
Yes. So I started Googling found out about the gastric bypass, potentially helping and so I went to my gastroenterologist locally. And I mentioned Have you ever done this on a type one? Or have you heard of anyone that had gastroparesis that had this and he's like, No, but I know there's a doctor with affiliated with the weight loss center that if anyone would know it's him, so go see him. So that was in late 2014. I saw. I don't know. I mean, Dr. Al,

Scott Benner 56:34
I'll say Right. Dr. Lowery, we'll call him like, his name is not? No like this was just like Dr. Mo, Dr. Lowery, Dr. croad will

Amy 56:42
know he's I don't mind giving his name, but he's awesome. I mean, he's the best he gave me my life back, honestly. So I went and saw him and talked to him about it. He said, I've never done gastric bypass on a type one. I do it on morbidly obese type twos. And I was obese at this point. But he's like, I'm intrigued. Let me talk to some motility doctors in Boston, because I live in a certain Central Mass, like a suburb of Boston, but I went to both I went to Boston doctors and local doctors. So he's like, let me do some research, and I'll get back in touch. So he calls me back in early 2015, and says, There was a study done on 100 type ones with gastroparesis, and they had gastric bypass surgery and 70% of them had a relief in symptoms. So I think I could do the surgery on you. And you'd feel better. And I was like, go and he said, I want to do the gastric bypass and also a partial gastrectomy. I do not know how to spell a lot, which is a partial removal of the stomach. I don't think they do that with all bypasses. But it was to prevent the bile backing up from my liver and continuing the nausea for me. Okay. So my husband and I left and he's like, I don't want you to have the surgery. What if you die because you know, most people thought oh, gastric bypass or you could die, etc, etc. Now, it's that's sort of a myth. Because they it's not open surgery. It's laparoscopic, etc. So we thought about it. And I said to my husband, Dave, I said, If I don't try this, I'm always gonna wonder if this could have helped. Yeah. So I said, I know you're worried but I'd rather try then. Live feeling the sick.

Scott Benner 58:38
Yeah, me. You were in enough pain, and had been at it long enough that you thought that I was 18 years died, then? Okay. Yeah. Yeah.

Amy 58:48
Wow. That was That wasn't what I wanted to happen. But I was like, I would rather risk it than be nauseous for the rest of my life and maybe be on a feeding tube at some point. When

Scott Benner 58:58
you talk about that kind of nausea. Like if you wake up at three in the morning to go to the bathroom. You're nauseous? Yep. Yeah, just nonstop. Like, like,

Amy 59:07
Yeah, well, sometimes it wasn't like I had breaks in it. But sometimes it was to the point where I like I can't leave the house because I felt so nauseous that I would start to panic that I would get sick.

Scott Benner 59:20
Oh, then that kid was buried with the thing. Yeah, theater.

Amy 59:23
Yeah. I had my doctor and his team of Wonder insurance people got the surgery approved. And it was, I guess experimental because I was still overweight but didn't qualify weight wise. So they were doing it for the gastroparesis and had the surgery August 14 2015 and haven't been nauseous since he took my gastroparesis away pretty much like so. I have a pouch. Oh,

Scott Benner 59:55
hold on one second. Before you tell me about that. Do you know what the function was? was like, how did it help? Yes.

Amy 1:00:02
So it bypasses the stomach and the food goes into a small pouch and goes into the small intestine. So it's bypassing basically and I'm probably butchering the explanation of this, but it bypasses like the whole motility issue. He thought I would feel better it basically and I don't want to say cured, like, let's just put it in quotes, like I don't have that nausea anymore pains gone any of that? Nothing. He took out my pacemaker during the surgery. And also, because I didn't need it. And yeah, I mean, I kept waiting, like so when I first woke up from surgery. I was super nauseous because anesthesia and I had to have it at a Boston hospital because it was high risk. And I would they kept giving me morphine that and I'm like, I don't want this. Take me off of the pain meds. I feel nauseous. And so I didn't realize I wasn't nauseous anymore at all. I got out of the hospital when I was there, like two days low because the pain meds made him nauseous. Yeah, I get so nauseous from pain meds, I hate them. So they took me off of them and said, Oh, you can take Tylenol, but since you're resisting like the other meds you got you don't need to stay here. And I'm like, okay,

Scott Benner 1:01:16
they were just keeping you there to get you high. That was pretty much.

Amy 1:01:19
Well, yeah, I was slurring when my husband came to visit. So yeah, pretty much. And then you have to cheat like it's, it's months before you can eat again, you're like on liquids for a while. There's a whole it's not easy, but it was so worth it. And I mean, can I eat what I used to know. And I probably could allow 90% of the stuff in smaller amounts to come back. I won't. Because I have a problem with food. And some of those are trigger foods. And this is the only chance I'm going to get with this can't have it done again. So I know that it's a huge gift and I don't want to mess it up for

Scott Benner 1:01:55
you on a much different level. I have I understand what you're saying. Like, I never thought I'd be this thin. Like,

Amy 1:02:04
Yeah, seriously. I am Yes, I'm then now, too. But also, like, I'm not sick every day. Yeah.

Scott Benner 1:02:14
Because the removal of the nausea. And the torture alone just sounded amazing. Like what a relief.

Amy 1:02:21
Yeah, it was. I mean, the only thing that's happened. Post surgery basically is I've had an extreme amount of lows, which honestly, I've had a lot of those to my lifetime, but seven episodes where I lost consciousness.

Scott Benner 1:02:37
Why is that happening? Do you think that most of it was before

Amy 1:02:41
the Dexcom the worst, and was in 2016, my daughter was eight at the time alone with me. I've laid down because I was tired. And then I'm in an ambulance. I had a seizure. When I was home alone with her, and didn't I don't remember it. She FaceTimed my husband at work showed her what I look like showed him what I look like on the iPad. And the next thing I know, and I'm in an ambulance, and my blood was 13. And I had barely any blood pressure, barely any body temperature by the time I got to the hospital. But the best part of that, and I'm being sarcastic was they sent social workers and because I was alone with her. And even though it wasn't done intentionally, they said it wasn't safe. Because I was alone with her and I could have died and she was there by yourself. So they

Scott Benner 1:03:41
take your kid? No, no. These people in Massachusetts don't mess around.

Amy 1:03:48
Department of Child and Family Services called us. After I got out of the hospital and interviewed myself and my husband. And my husband was pitches and yelled at them. He's like, she had low blood sugar. I was at work. What if one of us, God forbid at a heart attack? Like you don't plan it? Yeah. So they interviewed us over the phone and like that was it in a closed whatever case they had that that was like, bad,

Scott Benner 1:04:18
like coals like second Halloween. We were sitting on the floor in this little condo we had and we were carving pumpkins. And I left the knife on the floor and cold kicked it and it cut his toe. Like they had enough. We had to go to the hospital. And we're like they're they're fixing them up. And they're talking to us and like what is happening? And then it hit me. I was like, Oh my God. They're trying to make sure we didn't hurt him. Yep, yeah. It was like, it was interesting because we were young. And I mean, it's obviously it was such an accident and like shocking, but like as it's happening, you're going Oh, I see. I see what's going on here was it? I can't imagine like yeah, you have a little blood sugar like what are you gonna do about it? Well,

Amy 1:05:01
I woke up in the ER with a nurse yelling at me like how could I be alone with my kid? Oh,

Scott Benner 1:05:09
maybe she should go to hell. So

Amy 1:05:11
I see him her my my daughter and my husband in the ER room and like they're really worried because I guess I could have died. Sure. No, I

Scott Benner 1:05:21
mean, obviously if

Amy 1:05:22
my daughter wasn't supposed to be home, either. Oh was sick, or she had a cold and didn't want to go to aftercare. And my husband was supposed to go to a Celtics game and not get home to like nine o'clock at night so I would have died. I don't want to say this is God or not saved me? Yeah,

Scott Benner 1:05:38
my God. I don't want to say this is what you get for being a Celtics fan. But I think what happens I'm, by the way, Boston,

Amy 1:05:46
what do you expect?

Scott Benner 1:05:47
I mean, name is Brady. Of course it is. Not my choice. If I walk outside your Brady in Boston, every dog in town is gonna rock racing

Amy 1:05:55
your dog and half the kids.

Scott Benner 1:05:59
I I don't know why I was almost like, it almost made me laugh out loud thinking of like your daughter taking the iPad and being like pointing it at you and go, Hey, what's happening to the lady right now? Can someone like tell me what to do here? Like, it's like,

Amy 1:06:13
no, she's better with technology than me as she FaceTime my husband and said, What is this is what mom's doing? And I was having a seizure. Yeah,

Scott Benner 1:06:22
I just mean like, it's like kids.

Amy 1:06:25
Yeah, but not call 911. But hey, dad, well, yeah.

Scott Benner 1:06:30
Let me let me jump up on Tik Tok and DM a couple people see if I can figure out what's going on here. Right. 100%

Amy 1:06:35
That's what what happened now. But yeah, so I had a Medtronic. And I'm not bashing them, because they served a purpose for me for a while. But I had the first sensor that came out, which wasn't great. And I ran out of sensors, because they would go bad all the time where you would get it would say bad reading or bad sensor, bad sensor, and then it would die. Right. So I ran out and I didn't have one on. And I fell asleep. And yeah, that's what happened.

Scott Benner 1:07:06
You have a modern looking sensor coming out. I heard Yeah, maybe they like I mean, took a while. But

Amy 1:07:12
love Dexcom they have they saved me over and over. So yeah. Are you using lollipop five now? Yep. And XCOM?

Scott Benner 1:07:19
How's that worked for you?

Amy 1:07:20
It works really well. For me. I still, like fidget with it. Like I override it much to my endos dismay. Yeah, I think it's pretty good. Yeah, very nice. Like it.

Scott Benner 1:07:35
I mean, it's just like a different world from what you grew up at.

Amy 1:07:38
It's Oh, my God. Yeah. I mean, we wake up with alarms sometimes. Like, I still get a lot of lows, honestly. But my 81 C is between five and 5.5. And when it's below that, because it has been my endos like you had too many lows, except for except, you know, like that whole thing? Because I've been 4.5. Yeah, that's not great. Because of the loads.

Scott Benner 1:08:02
How Why do you think the loads happen? Like because I mean, now you're on an algorithm. It's trying not to make you low. So is it something about your digestion or your or what do you think it is? Sometimes

Amy 1:08:12
I give too much of a Bolus. Oh, yes. I'm listening to the remaster pro tips. Oh, good for that bump and nudge. And also the fix? Like, I'm pretty sure that something needs to be a while at adjust itself, but I probably need to reset it.

Scott Benner 1:08:30
Yeah. I mean, you just you shouldn't be getting low that often. That's all I know. Yeah, you're doing that.

Amy 1:08:35
You know how much I spend in glucose? It's insane. Um, the reason they don't have any left on Amazon. I

Scott Benner 1:08:42
figured this is the only sweet thing you're left eating. So you're like, yeah, yeah, pretty much. Well, yeah, I mean, I mean, in like, in all honesty, if you're having that many low settings or wrong somewhere or your Yeah, like being too aggressive with something somewhere like the

Amy 1:08:58
thing. Yeah. I don't know. Exactly. Bolus thing because I'm impatient. So if I spike after a meal, I'm like, Oh, my God. I gotta fix it right away. Because I don't want any more complications.

Scott Benner 1:09:10
What are we calling a low? What? Number 70.

Amy 1:09:15
So you're treating a 70? Yep. But not I'm just doing a little, like robot on glucose gummy. Yeah. Or one step not juice. I can't have it. You

Scott Benner 1:09:26
treat a 70 that will stay at 70 Or is it a falling so well? It's a falling 70 When you say you see a spike that you're like, I can't have this. I don't need more complications. What's that number for you? 150.

Amy 1:09:38
Okay, which is high. I mean, my doctors like you can stay at 141 50 I would love it. And then I hear all these people on the podcast or see them in the group. Like my kid was 110 like, Oh my God, and I'm like, 110 I love one.

Scott Benner 1:09:54
I wouldn't freak out about a 110 but, but do you ever say to the doctor hey, you You didn't have your stomach hurt for 18 years, you'll know what your what what I'm trying to avoid here. You know she? Yeah,

Amy 1:10:06
but she also said to me when I lost consciousness and ended up in the hospital with a seizure with my daughter. She said this is she said, I'm getting you a Dexcom right now. Yeah. And at Omni pod and if that ever happens again, I'm not going to be your doctor. Because I had had a lot of loss of consciousness. But that was the worst. Yeah,

Scott Benner 1:10:30
I mean, I don't want to like I'm not like,

Amy 1:10:34
I'm not Vic doesn't want me to run low.

Scott Benner 1:10:36
Yeah, but I mean for you. Like I'm not victim shaming when I say this, but you're not good at this. So

Amy 1:10:41
100% Yeah. Oh, my God. Yeah, right.

Scott Benner 1:10:45
I know. But better now and getting better still.

Amy 1:10:48
Yes.

Scott Benner 1:10:50
How long? Have you been listening to the podcast? Two years, things gotten better since you started listening? Yep.

Amy 1:10:56
Okay. Yep. Cuz I learned I still learn stuff all the time. And I'm an old time diabetic. Like I learned tips. And like I said, I'm starting. I'm on number three of the remastered series. And I'm gonna listen to all of them. Because last time I didn't listen to all of them. Oh, you

Scott Benner 1:11:13
jumped around? Yep. Scott told you to listen straight through that Scott back then said specifically to people. I know. You're gonna want to skip over ones you don't think relate to but please just listen to them all. And then you were like, now I know better than him. Don't worry.

Amy 1:11:27
Like, I don't need to listen to the female hormones. I'm old. I'll skip that. I don't do MD I'll skip that. female

Scott Benner 1:11:35
hormones. One's a great. Like, it's a great episode just to kind of like, understand, like, what happens when there are different impacts that you don't expect even if you don't have those hormones, it still applies to something is happening to you.

Amy 1:11:48
Correct. I need to listen, I'm listening to that. I'm talking to the other

Scott Benner 1:11:51
people at this point, Amy, your soul, your soul, obviously. But I'm just telling you that Jenny and I sat down and we put together what is it like? It's a 26. Jesus. It's like it's 26 parts here. People are like 26 parts. Just shut up and listen to it. And it really well. It really will help you like it. I genuinely believe you listen. Yeah, you listen to that Pro Tip series. You've got an A one saying the low sixes or the high fives.

Amy 1:12:16
Yep. It's mine's in the mid to low five or hell yeah. But he told my Endo. I like quote you to my auntie. Yeah, no, she's good, though. I have a great endocrinologist. I'm

Scott Benner 1:12:30
really lucky. You go into Boston for your doctors, you know, you stay.

Amy 1:12:33
I stay in, like Concord mass at Emerson.

Scott Benner 1:12:37
You actually have a central mass like. Yeah, yes. You're not like real harsh, like you're on the coast. But it's still there a little bit. And you're Oh, crap.

Amy 1:12:48
You're talking about my accent? Yeah, sex. My husband has more of one because he grew up in Worcester. You're

Scott Benner 1:12:56
also aggressive in a nice way. Oh, no, I'm good with it. Because I grew up in Philly. Yeah, no, I know. You will not let me cut you off. Oh, I

Amy 1:13:06
cut everyone.

Scott Benner 1:13:08
You're like, I'm not talking. By the way. The one time you let me go. This is hilarious. I'm Thank God, I remember to bring this up. You're talking about the surgery for the gastroparesis. And I'm trying to understand the functionality of why did it help? And you were about to tell me, but you actually stopped and let me ask my question. And then you answered it. And I thought, Oh, God, she was just about to say this, and I stopped her. And you were fine. You were nice about it.

Amy 1:13:32
But yeah, I'm always nice about it.

Scott Benner 1:13:36
I don't think you're not nice. By the way. I just you have a northeast way about you that some people 100% Yeah, you get different parts of the country. It just sounds like we're like arguing with each other. And I'm just like, well, this is a lovely conversation. Oh my gosh, did we miss anything? How's that list looking? Work?

Amy 1:13:57
Good. I have one daughter, but not like we adopted her as a newborn. I don't. Maybe that's out of order. But wait, what?

Scott Benner 1:14:06
Are ya have a daughter? You've been talking about her the whole time? Yeah,

Amy 1:14:10
so we my husband and I My husband has a really rare genetic condition. And I'm gonna mess this up. But Fanconi syndrome. So it causes a problem with his bones and his sister. His older sister was the first one ever to get it. He's the second Oh, goody. And it causes like short stature. And so he's, like, you short like me. And he gets a lot of stress fractures and stuff like that. It's the old name was pseudo Flores and diabetes, no idea how to spell it. But it wasn't diabetes. So when we met, we met online and he said, Oh, I just want you to know, I have this and I said, I have diabetes. And he's like, Well, that's that and like we've been together ever since because we He immediately bonded from having a chronic illness our whole lives as kids probably were at Children's Hospital together never knew each other as good. This is why you adopted. Yeah, because they had never I couldn't get pregnant with the pacemaker in my stomach. And I they said, You'll have horrible morning sickness because of the gastroparesis. And Dave said, I don't want anyone. I don't want to pass this on to a child. Yeah, so, but we never thought we'd be able to adopt. We did like all different. We looked at all different things. And we adopted our daughter Maddie in 2009. It from Maine, and she was two pounds two ounces. She was a preemie so my insurance company, all of us she was in the NICU for months. Wow, you

Scott Benner 1:15:49
adopted a preemie? Yep. And yep. And so

Amy 1:15:54
you didn't even know answers. And she's bigger than me now. And tall after

Scott Benner 1:15:57
the crazy. How did you find her?

Amy 1:15:59
So we went through a private agency in Maine. And while they had a branch and mass, and we did an adoption profile, like a scrapbook like a deer birth mother a letter and a birth, a set of birth parents picked us to adopt the baby before you know before she was born, they met us we met them in Maine. And Maddie. The pregnancy was high risk because the birth mother has older than Maddie child, another biological child that she's parenting. And she was a preemie. She was born at 25 weeks, I guess. Or Yeah. But Maddie was due on March 13. It was due on Christmas. It was born on Christmas Eve. She was 26 weeks and eight days, or Yeah, something like that. And we got a call on Christmas morning that she was born and to take an hour pack up our house and be prepared to spend a few months up in Bangor Maine, in Maine

Scott Benner 1:17:03
in the winter. Oh my god, it's not even a real place. It's so hot. They

Amy 1:17:08
have a subway and a Quiznos or they did back then. We went to like every day, like

Scott Benner 1:17:14
Quiznos. Good for you mean I've told this story before but during my son's recruiting for baseball in college, there was a college in Maine that asked him to come play there. And it was such a good academic school that it was worth having the conversation. And he's on the phone with the coach the coaches like the heat the our fields heated Oh my god. What the hell again? And the benches in the dugout are heated and cooled. Like where? Where's Maine has like, I think it's Canada. Anyway, it's pretty close. Yeah. And at the end of the call they the guy said and every year we have a great hunter. Yeah, like we get together and we go on a team hunt my son's like, I want to play baseball in college, but I'm not up for shooting something and freezing myself for it. So I'm gonna go now. And I was like, yeah. Lovely people, by the way, would have been a great education. It was one of those things. I

Amy 1:18:11
know school, I think. Yeah, you probably do think I do. My husband's friend went there. But super cold. Super cool. So Maddie was born in a level. And in a level three NICU, luckily, and we were there for five and a half weeks in Maine. It was amazing experience actually were there. We took leaves from work unpaid. And we're with her, like, parenting her from the first day.

Scott Benner 1:18:38
I'm gonna ask a difficult question. Yeah. Did you think there was a chance she might not make it?

Amy 1:18:42
Not really, because when we got there on Christmas Day, they said she was breathing on her own. And medically she looked okay. They knew that the baby was going to be born early. Because the medical condition that the birth mother had, and that she had a previous preemie. But she was breathing on her own. Okay, for the most part, so she looked perfect. When we got there. She was this little tiny dot. I mean, matter of time. She had a clementine for a head, like for the size. Let's just put his she was a Yeah. And if you saw her now and she's taller than us. Wow. So the NICU nurses called her a feisty broad. My baby. And she is one. Yeah. As a 13 year old. So yeah. So she does. And I probably shouldn't say it wasn't a bogus because she might listen, I doubt it. She has reactive attachment disorder. I don't know if you know what that is. I think there was somebody on the podcast who adopted from I'm not sure if it was foster care or adopted an older child or something that I remember listening to it on one of your episodes. And typically, newborns don't get it. Sometimes they do. And my child has a phys it's a neurological disorder from gets from being adopted.

Scott Benner 1:20:06
A mental disorder rare but serious condition in which an infant or young child doesn't establish healthy attachments with parents. Yep, that's weird. I didn't know what

Amy 1:20:17
the rest of her life.

Scott Benner 1:20:18
So how does

Amy 1:20:19
that present lots of rage from her breaking things. It's gotten better. We've had very pensive therapy for the family and she goes to therapy we all do. She needs extra help with some things because she has this need to be perfect. She feels shamed from being adopted as what they tell us. But she won't let us talk about the adoption. She knows. We're super happy. She's adopted. We're proud of it. We want to tell everyone, but she doesn't want to stick out. Interest though. She doesn't want to feel different. She doesn't want any of that. And she looks like my husband. So she doesn't tell anyone. And yeah, but it's the best thing. We were so lucky. Yeah. So no, good.

Scott Benner 1:21:13
Well, I'm glad she's with me too. I'm gonna share something that happened in the middle of the conversation that I kept to myself at the time, but I am my birth mother, because I'm adopted. My birth. My birth mother died during gastric bypass surgery. Oh, no, that's the thing I found out like, obviously, I'm

Amy 1:21:31
sorry. I know she passed away because I heard you mentioned. Oh, yeah. So

Scott Benner 1:21:35
when did she have it? Because it was a long time ago. So yeah, people die. died when we even considered when my wife, let me just be clear, but my wife forced me to look into my like birth parents. Because I'm a boy, I didn't care. Yeah, yeah. But that's what I learned. Like she, the way her sister explained it to me, became despondent, over having to give up her baby, and became morbidly obese through that process, eventually tried to do something about it and had a cardiac arrest during the surgery. Oh, my gosh, but she was like, she was like, 40, like in her early 40s. I think that's awful. Yeah. I want you to know what you appreciate. You're saying you're sorry. I haven't. I mean, I, I have no attachment to the idea at all. So yeah, so I've heard

Amy 1:22:25
you talk about it before. Yeah. And I mean, honestly, Maddie is obviously a child she is she doesn't, either. And if that makes sense, like, doesn't want to talk about it doesn't feel like the best. The biggest gift that her birth mother gave her was to let us parent or really she doesn't get it. And hopefully she will. And she'll have a good happy life. Yeah.

Scott Benner 1:22:52
You learn a lot as you're growing up. That would probably be Well, yes. Oh,

Amy 1:22:56
she's smarter than us. She's 10 steps ahead of us. She's Yeah.

Scott Benner 1:22:59
I don't know, the FaceTime thing with a nine one instead of 911. Yeah,

Amy 1:23:04
yeah. No, that's sir.

Scott Benner 1:23:05
I was gonna say actually told me about the reactive attachment that actually I was like, I wonder if she didn't have as much of a like, go like, Oh, my God, what's happening because of that? It actually is what happened to me. Like when you said that, it was like, Oh, I wonder if that had something to do with that.

Amy 1:23:19
No, she's probably like, oh, there's a landline here. I don't know what that is. I use this phone. Yeah, exactly. She Well, she probably had a phone then actually. Well, Amy,

Scott Benner 1:23:30
I appreciate you coming on and sharing this with everybody. It's just really terrific. Thank you. Thanks. No, it was it was really kind of you to do. No,

Amy 1:23:37
I want to I'm hoping that somebody that has gastroparesis, but fit and feels well, I hope nobody feels awful, but and they haven't thought of different things to help that. I'm happy to talk to anyone or maybe they'll do some research and configure it out. Okay. I

Scott Benner 1:23:54
would be lovely. Alright, when this episode goes up, we can tag you in the Facebook group if you want.

Amy 1:23:59
That'd be awesome. Do you know when it will go up? Oh, sure.

Scott Benner 1:24:03
Yes, sometime next year. I am a victim of my own success. I'm sorry. Yeah. No, it's okay. It's okay. The odd thing is, is that it doesn't matter to the people who are listening at all, ya know, the only thing that happens is like in a situation like this, I think, Oh, this is information I'd like to get out. And I have this feeling. Almost every time I record, I'm like, I'm gonna move this one up. Like I always like I get down on like, this one's gonna have to go up next week, obviously, because of the thing someone shared that I think, Oh, God, I thought that same thing yesterday and a week ago. And last month, they just keep going just keep doing it the way you're doing it. So it's weird for you. But for the people listening, it's meaningless, you know, when we record versus when they get to hear it, and I already put them up. So I tried. I went to five a week. It was like, I'm like, I'll catch up and I still have a backlog of ADFS I'm looking at Oh my

Amy 1:25:00
gosh. So So literally like this time next year, it should be up.

Scott Benner 1:25:05
No, it'll be six, seven months ish. In that space. Who knows? Yeah,

Amy 1:25:11
do I get? I don't hear it before everyone else here.

Scott Benner 1:25:14
No, no, that's not gonna happen. I don't have the

Amy 1:25:18
how bad my voice sounds you know, you always think you've sound much better when you're recording than you do. Yeah, that's me, not me. I

Scott Benner 1:25:25
love the sound of my voice.

Amy 1:25:26
No, your voice sounds great. But I'm worried about mine. Now your sounds right, my daughter fake records.

Scott Benner 1:25:31
I'm going to tell you what I'm going to tell you what I tell everybody. And I'll say it while we're being recorded. You're the only one who has an expectation about what you sound like. No one else knows you're a voice to everybody else. So you sound completely normal to everybody. Well, that makes sense. And you're not screechie And like, because there's there's a couple of I mean, I guess like, Let's not lie, there's a couple of voices that are hard to listen to. But like voice types, you don't have one of them. Oh, good. Okay. You're terrific. You have a nice you have a nice even voice. I love it. Well, thank

Amy 1:26:06
you. Of course,

Scott Benner 1:26:07
hold on one second for me.

Jalen is an incredible example of what's so many experience living with diabetes. You show up for yourself and others every day, never letting diabetes define you. And that is what the Medtronic champion community is all about. Each of us is strong and together, we're even stronger. To hear more stories from the Medtronic champion community for to share your own story. Visit Medtronic diabetes.com/juice box and look out online for the hashtag Medtronic champion. Thank you so much for listening. I hope you enjoy my full conversation with Jalen coming up in just a moment. A huge thank you to ever since CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the ever sent CGM? You just replace it once every six months via a simple in office visit. Learn more and get started today at ever since cgm.com/juice. Box. Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice box or call 888-721-1514 My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com. To us Med and all the sponsors. You have questions Scott and Jenny have answers. There are now 19 ask Scott and Jenny episodes. That's where Jenny Smith and I answer questions from the audience. If you'd like to see a list of them, go to juicebox podcast.com up into the menu and click on Ask Scott and Jenny. I know that Facebook has a bad reputation. But please give the private Facebook group for the Juicebox Podcast. A healthy once over Juicebox Podcast type one diabetes. The group now has 47,000 members in it, it gets 150 new members a day, it is completely free. And at the very least you can watch other people talk about diabetes, and everybody is welcomed type one type two gestational loved ones, everyone is welcome. Go up into the feature tab of the private Facebook group. And there you'll see lists upon lists of all of the management series that are available to you for free in the Juicebox Podcast, becoming a member of that group. I really think it will help you it will at least give you community you'll be able to kind of lurk around see what people are talking about. Pick up some tips and tricks. Maybe you can ask a question or offer some help Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.co

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