#1386 From JAX to Indy
Stephanie uses a Mobi pump and has had type 1 for 26 years.
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Scott Benner 0:00
Welcome back, friends to the Juicebox Podcast.
Stephanie's had type one diabetes for 26 years. She's 46 now, and she advocates for herself along the way. Today, Stephanie uses the mopey pump, and we're going to talk a great deal about it. 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. 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 Juicebox at checkout to save 40% at cozy earth.com don't forget if you're a US resident who has type one, or is the caregiver of someone with type one visit T, 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Guys, the end of the year is coming close, and I just want to thank you for another record breaking season of the Juicebox Podcast. Thank you so much for listening, for sharing and for supporting the things that I'm doing here with the Juicebox Podcast and on Facebook. I'm having an on body vibe alert. This episode of The Juicebox Podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year. One CGM one year, not every 10 or 14 days ever since cgm.com/juice box. This episode of the juice box podcast is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, us. Med is where my daughter gets her diabetes supplies from, and you could too use the link or number to get your free benefits check and get started today with us. Med, this show is sponsored today by the glucagon that my daughter carries, G VO, hypo pen, find out more at G VO, glucagon, com, forward slash, juice box.
Stephanie Reiner 2:28
I'm Stephanie Reiner, and I was diagnosed with type one diabetes when I was 20 years old, which was July 5, 1998,
Scott Benner 2:37
9002 1008. 18, and then, like, what? Seven? Almost 626. Years? Are you 46
Unknown Speaker 2:45
Yep, I'll be 47 the end of
Scott Benner 2:47
the year. Me. So what happened? Fireworks, scare you gave you diabetes,
Speaker 1 2:53
right? No, I, I went to Wales on spring break in college that year, and everyone on the trip got sick with some sort of respiratory flu type thing, and no one was diagnosed with anything, and it just lingered. I graduated college early at 20 and was excited. I booked a international tour to be a vocal soloist and the dance captain, and then that was for the fall, and then for the next spring, I was supposed to tour the US singing and acting, and so I just needed to fill the summer. So I went to work at a summer camp in a very small town in Indiana, which I'm from Florida. So I knew nothing of Indiana. That week, I started getting sick, but that week, they made us work in the kitchen, and I discovered it was grade D. Government donated meat. So I was like, this might be why I'm and a friend from Florida had also gone, and he was getting sick too. But then by that Friday, I slept for like 20 hours straight, got up, went to dinner with them, went back to bed, and then Fourth of July, went to a party at someone else's house. Then we went to a concert as I was going to the concert, I hit my head getting into the car, so I had a massive headache. I remember being really thirsty, so I got like an icy because none of the drinks sounded good to me, so lots of sugar. And then I slept through the entire outdoor rock concert. So I slept through the Fourth of July, and then when I woke up on the fifth I could barely walk and was sick, and the previous day's dinner came up the same way, smelling the same way. So my digestive system apparently had already shut down. I was driven to an acute care place where they wouldn't give I was just like, can I please have water or ice? And they were like, we don't have ice. And then me, with a swollen tongue, who can barely talk, proceeded to read them the riot act about as an acute care clinic. They're required to have ice because of the nature of the injuries they deal with. Because I had worked at acute care clinic a
Scott Benner 4:52
previous summer, that's where you went,
Speaker 1 4:55
Yeah. And I'm like, Look, if I can't have ice, I can't have ice. But don't tell me you don't have ice. And all of that's where the. Swollen tongue. So I'm sure it was very easily understood, by
Scott Benner 5:04
the way, had we cooked your tongue? It maybe smoked it for a couple of hours at 225 degrees, it would have been better than that meat you were eating in the cafeteria.
Speaker 1 5:11
Yeah, it was bad. That was about it. They were like, you can have something after you see the doctor. So they gave me water, which you should never give to someone who's that dehydrated that their tongue is swollen, so like, what popsicles I had taken down came right back up, and then they had me get on the phone with my parents, who were in Florida, and I'm just so lethargic and my tongue is swollen that I'm like, I don't even want to talk to them, and I'm like, whatever. I just need to sleep. You guys talk to the doctor. So they decide that I should go to the ER, and I'm still like, if you just let me sleep, I'll be fine until we got to the ER, and there's a nurse waiting outside with a wheelchair. They take me back into a room. There's six nurses and a doctor waiting on me, and they immediately start to work, and I'm like, I'm going to die. They don't care if I have insurance or if I can pay because all these people are waiting. And they immediately started working. And that's when I knew it was serious. I had a really bad headache, and it was my heartbeat was elevated all the what I know now is classic DKI symptoms, but as someone who's danced my whole life and I played a couple of RC sports and intramurals in college, they were telling me that I had too good of muscle tone to be a type one diabetic. And, yeah, yeah, exactly, yeah. What? What type of I
Scott Benner 6:33
mean, you've had diabetes for a long time now. Do you see any correlation between that? No, not at all. But listen, I think it's such a you're not going to say a more damning thing in this entire conversation. Maybe, maybe you will then I knew I was sick when they didn't ask me if I could pay for this.
Speaker 1 6:48
Yeah, that's when it got serious. So they did. They did a spinal tap and they did a CAT scan, all because they knew my blood sugar was elevated. But they were looking for other causes, and they couldn't find another cause. So after several hours in the ER, they moved me up to an ICU, and they decided that I'm so dehydrated that they have to do a central line. But they've never done that on anyone who was conscious, so they are a little nervous, and they keep asking me questions like, what's today's date, and who's the president? Why you have a Florida driver's license. Why are you in Indiana? So, like, my medical records have this whole paragraph about how I just graduated from UF with a degree in psychology and blah, blah, blah, blah, and I was supposed to go on tour, and I'm in town working at this camp and all this type of stuff. And then it's like a patient is amazingly co parent, according to body chemistry, she should be unconscious. So they made,
Speaker 2 7:39
hey, who was the president in 98
Unknown Speaker 7:43
I don't remember. I'm
Scott Benner 7:45
testing your recollection of the moment, not of the President. That's all, yeah, I
Speaker 1 7:49
don't Yeah. I haven't read my medical records in decades. But then they want me to sign a release, basically that, you know, if they kill me doing a central line, it's not my fault. But I'm so out of it and exhausted that I'm like, signing instead of using my hand, I'm like, using my shoulder to move my arm, because I'm just I don't have it in my muscles. And then I look at my signature, and it looks nothing like my signature. So I started laughing, and they all get relieved, and they look at me, they're like, what's so funny? And they're like, talking to me like, I'm five years old. And they're waiting for me to be like, there's purple elephants dancing on your head, you know, because it means I'm about to pass out, and instead, I'm like, well, that doesn't look anything like my signature. So if you kill me, I don't know that that would stand up in a court of law.
Scott Benner 8:28
They're just like, if this girl would just pass out, we could give her this line, yeah, not
Speaker 1 8:32
appreciate that. So then they basically, they're like, Okay, you have to take a deep breath and bear down and don't breathe again, because we're going to do a central line where we go through the muscles of your chest straight into your heart, if you move, you can create an air bubble that would go directly into your heart and kill you immediately.
Scott Benner 8:50
Wait, I could? I feel like you could. I don't want to sign that. Give me that back, right, right?
Speaker 1 8:54
So that's what I did. They just numb. They did a topical numbing. And then you feel everything else, and you just take a deep breath and hold they got the central line in, and then this was a teaching hospital, and this poor resident, I don't know what he was, intern, whatever comes up, and the doctor had sent him to get me a popsicle, because that's all I had been asking for the whole time I was there. And he comes back and he's like, we don't, she can't have a sickle. We don't have any sugar free popsicles in the whole hospital. I've been any names all the floors he's been to. And
Scott Benner 9:26
the doctor on the first floor, I've been third floor. I was on the fifth floor, exactly.
Speaker 1 9:30
And the doctor just looked at him and was and read him the riot act, like, up one side and down the other. He's like, I don't care if it has sugar, it doesn't have sugar. Do you see what we just did to her? We're gonna put her on an insulin drip anyway, get her a popsicle. I don't care what type it is like. So then I wound up in ICU, and by this time, the people who worked at the camp and my friends and all the other counselors were all like waiting outside, so they let three of them come in. At that point, it was already after visiting hours. Hours, but they let them come in, and they're all just like, staring at me. And when all this happened, I didn't know at the time, but my friend from Florida got like, had gone to buy me popsicles and took it back to the camp. And as he gets to the camp, the guy who leads the camp was leaving and was like, why are you here? Stephanie's in the hospital. So they turn around and come back to the hospital. He walks in the ER, as the doctor comes out and goes, Look,
Scott Benner 10:24
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Speaker 1 12:43
we don't know if she's going to make it. If there's anybody you should call, you should go ahead and call them now.
Scott Benner 12:48
Your friend who's on a popsicle run was told you weren't going to make it. Maybe, yeah, when
Speaker 1 12:51
he walked into the ER, that's what the doctor told them. And there's like, you start, should start calling people. So he's the only one who actually, like, knows me. Stephanie,
Scott Benner 13:00
contextualize this again, you're in what state and where is your family?
Speaker 1 13:04
My family's in Florida, and this has happened. I am Indiana, Indiana, okay, and this guy who he and I sang in a touring ensemble together and stuff like that, he was working, we happened to choose the same summer camp, which literally is what saved my life, that we chose the same summer camp, and so because he's the one who found me that next morning when I couldn't move, he had gone to get popsicles, was sent back to the hospital, he walks in to the ER gathering with the other people from camp. When the doctor comes out and says, we don't know if she's going to make it or not, you should start calling people. So he starts calling all of our friends in Gainesville. He does not have my parents number, so he does not call them. And then one of the girls who was in a touring ensemble with us calls my parents, and she's hysterical, and she's like, I'm so sorry. Is there anything I can do? And my parents are like, they have no idea why she's so upset, because they talked to the doctor at the acute care clinic who made it sound like it wasn't any big deal, and I would be fine. Yeah. Then they get a call a little while later from the ER doc, who says scale of one to 10, Tim being fatal. We don't know if she's a nine or a 10. You need to get here tonight. So they immediately tried to book flights. There was a flight out of Jacksonville through Atlanta, but it wouldn't get to they would miss a connection in Atlanta and they wouldn't make it to Indiana. There was a flight out of Orlando that they could take, but summer of 98 was very dry in Florida, and we had massive wildfires that the smoke had shut down I 95 so they couldn't get to Orlando either. So they drove the like 14 hours across country, not knowing if I was going to be alive or dead. And that was like 98 when people didn't really have cell phones like that, and cars still sucked, right? Yeah, okay, yeah. So they got there the next morning, and I was conscious, and I. Could talk a little bit, but I was just very weak. And so I was in ICU for a couple days, in a regular room for a couple days, and then they dismissed us. The Diabetes training was awful. I had some lady who was much older than my grandmother talking to me about, you know, doing a syringe and an orange because it feels the same. And then she wanted me to poke her and give her a saline shot before I gave myself a saline shot. And I'm like, yeah, no, I'm I, I will give it to myself. They hired some
Scott Benner 15:32
old lady who's a masochist. They're like, she's like, give me a shot, please. Orange,
Speaker 1 15:36
a couple shots, but I'm not going to give you a shot, lady. And and my skin feels very different than your skin, you know, because of collagen, yeah, so it both feel the same. And I definitely don't want to, like, leave a massive bruise on some random lady. So because I've been pushing through an orange then my mom, my dad, and my dad, once he found out I was going to be alive, your
Scott Benner 15:59
dad was like, I wasted this trip. I took a day off from work go back to Florida
Speaker 1 16:03
because my sister is, my sister's three and a half years younger than me, and so she was, like, in high school at the time, and so she was, like, staying with my grandmother. So my dad flew back, and then mom had to drive me back, and so she was begging them to, like, discharge us from the hospital early in the morning because we had a really long drive. And drive. And of course, we were discharged, you know, in the early afternoon instead. And I had to, like, lay down the entire trip home, because my eyes were rehydrating, so everything was going in and out of focus and was blurry, and it just, it was awful. So I couldn't really help, I couldn't help her drive, and she's looking at a 14 hour drive. I had to go back to school for insurance purposes, so that it because this is before insurance reform. So I went back to school. Just went to community college so that the summer was a quote, unquote summer off, and would still be covered by insurance versus diabetes, forever being pre existing never covered. Oh
Scott Benner 16:57
yeah, you had to keep you, had to keep yourself insured consistently so that you didn't have to go look for insurance again as a type one.
Speaker 1 17:04
Yep. So then I had to bail on the international tour that I had booked and the national tour because they would not allow type one diabetics. What kind of tour at the time, music were you singing? It's like a Broadway style for the international tour. I was going to tour US, Canada, Great Britain and Europe as their dance captain and a vocal soloist. They had never had anyone do that. So we're actually rewriting the roles and the entrances and exits to make it work for me. And then I had to call and be like, Thanks for rewriting it. But I have type one diabetes now, and I have to go back to school.
Scott Benner 17:36
Geez. Yeah, any other diabetes in your family or other autoimmune my
Speaker 1 17:41
dad's side has type two, nothing with type one. I had never even met a type one, and actually, I did not meet another type one for a couple years after being diagnosed, I didn't know of any on my mom's side, my mom did have low thyroid whenever she was pregnant with me, and because of my relationship with an endo later, she wound up on thyroid meds. There's not really any auto immune there. What you always ask is bipolar. I do have a relative who has bipolar, but otherwise nothing, no
Scott Benner 18:16
other auto immune stuff. Yeah. Also, we should be clarifying for people who don't, like, listen, like, like, Bipolar is not autoimmune, but it is very, uh, inflammation related, which is why I always ask about stuff. Plus I ask because so many people come on here, anecdotally, yeah, who have a bipolar relative, and I'm just like, at this point now, I'm like, anybody. I'm so stunned every time someone's like, Well, my uncle, I'm like, jeez, yeah. Crazy. Speaking of crazy, 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 long time 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. WILLIAM JEFFERSON, Clinton was the president 98 actually, this, this happened to you pretty much in the middle of the model. Lewinsky. Lewinsky, yeah, yes, that whole scandal, that's crazy. Kept saying popsicles. And I was like, I don't know, like I want to call your episode popsicles, my gosh, so you've had, well, I do want to go back a little bit. So you had to go back to school, but you went locally. It sounds like I,
Speaker 1 19:33
actually, I went back to school in Gainesville, where UF is, because I had been involved in the community there, and there was a dance studio I was teaching at and stuff like that. So, yep, so I went back to community college there, and I basically just took, like, dance and drawing and psychology classes. Do you still do those things? Yeah, I'm a choreographer, and I dance and sing and act professionally. Occasionally. Uh,
Scott Benner 20:01
professionally, occasionally, well, what
Speaker 1 20:03
that means is, I don't, that's I have professional contracts that I do, and it's just for one show, and then I don't necessarily pick up another contract to perform for a while. It has to be something I really want to do to disrupt my entire life. I see for it, because it's eight shows a week, it's
Scott Benner 20:19
just such a fun statement professionally occasionally, yeah.
Speaker 1 20:23
And then, like I do choreo, I'm paid to be a choreographer, and I, depending on the year, I can choreograph anywhere from two to six productions, okay? And then, since insurance reform happened, I no longer have to, like, work corporate, and then quit and go on COBRA for a year and a half before going back to corporate to be on a group insurance plan since that reform I tutor math and chemistry middle school through college. Oh, awesome. That's excellent, yeah, so it allows me a lot of flexibility. Yeah. Are you married? Do you have kids? I just got engaged a week and a half ago? Oh, congratulations.
Scott Benner 21:01
Yeah, no, kids, yeah. Well, look at you being an adult. Are you still in contact with the kid that found you?
Speaker 1 21:09
Not really. I mean, we are Facebook friends. It's not someone that I talk to regularly. You
Scott Benner 21:15
don't get a message every once a while, like, remember that time I saved your life? Yeah,
Speaker 1 21:19
no. It's more like every time July 5 comes around, someone from that camp will talk about, you know, how their life was forever changed, not knowing if I was going to live or die. Type of post happens, and then we all get tagged in it
Scott Benner 21:35
over the day Stephanie just disappeared. Remember the day that
Speaker 1 21:38
Stephanie went in the hospital, and then she wasn't at camp for the next month, and so we didn't have someone to teach drama or to sing.
Scott Benner 21:45
Oh No, kidding. Everything changed for this so everything, really, I mean, changed for you a lot more. But yes, okay, so throughout this time, it's a long time you've had diabetes, I don't know. I think I want to know about the shift between technology. I'd like to know what you've had to do to keep yourself healthy. You know, what are some of the like, rear view mirror things that you can look back on and say, These are the things I wish people knew about,
Speaker 1 22:13
yeah, when I was diagnosed, then they proceeded to give me, you know, like an exchange diet type of thing, where you I had to get up at eight o'clock and I had to take this mix of regular and NPH insulin, and I had to eat this many grams of carb, this many grams of protein, this much fat, this much fruit and blah, blah, blah, and on and on. And then at a certain time, I had to eat lunch, because that's when the insulin was going to hit, Ready or not, and there were certain things I had to eat. Then I had a choice. Around three o'clock in the afternoon, I could do a snack and eat dinner later, or I could plan to eat dinner earlier, and that would be a shift in my dose according to what I chose. It was not convenient that that shift happened right before, like a jazz class. So I'm like, shoving peanut butter crackers in my mouth to be able to go dance, and then I was required to, you know, eat a yogurt or something like that before I went to sleep. Every night, as a 20 year old, I would have to get up at eight o'clock every day, regardless as to whether it was the weekend or not, because of my insulin. It was difficult dating because it's like, Hey, I we need to go eat at this specific time. And these are the things that I need to eat, which, by the way, doesn't line up with any single menu item. So it's like, I'll take this entree and then I also need this side with this and this. And so I tried to follow it pretty exacting, but it was the most frustrating thing. And I had no hunger signals anymore, unless I was going low really fast and would shake.
Scott Benner 23:54
Is that because you were eating so frequently, you think,
Speaker 1 23:58
or like, hunger signals? Yeah, yeah. I have no idea, like, it got to where they'd be like, well, what are you hungry for? And I'm like, that. She said, I'm not hungry. I'm eating because I'm required to eat. I no longer, like, craved a pizza or a burger or something like that. From time to time. Has that
Scott Benner 24:12
gone away or changed? No, no. Arden talks about that, yeah,
Speaker 1 24:16
no, not at all. So it's the type of thing where it might be once every three or four months, and I'm like, Oh, I just really want a burger. And if I'm I've already planned to go out with friends and they're getting something else that's great. You can get whatever you want, but I'm gonna go to this place and I'm gonna get a burger and then I'll meet you, because I try to, like, reinforce the hunger signals that I have, yeah?
Scott Benner 24:35
But you try to, you try to pay your body back for telling you
Speaker 1 24:38
something like, yeah, thank you for actually communicating. Let's continue this. Here's the cheeseburger
Scott Benner 24:42
us for great a, exactly great a, by the way,
Speaker 1 24:46
that's right, no more government. Government donated junk. I, by the way,
Scott Benner 24:50
I have to tell you, I looked into it. The the D rating is not how they grade beef. But still, I like, I like the visual. Wait a minute. Hold on, I have a question. So you were like, as a young person, following this super strict schedule, and you were actually following it, right? So to the detriment of what it sounds like is your personal life and perhaps some of your happiness, but you followed it. Did it pay you back? Were you getting the health results that that you wanted?
Speaker 1 25:18
I didn't even know. Like what the health results goals were like when I came back to Indy, to Jax from Indy, I met with an indo and it was not good. Like, the first thing she said is, like she ranted to me about how I could never get pregnant until I had had a normal a 1c for at least nine months. And she literally meant a normal, as in, not diabetic, a 1c which, like in the fours, yeah, like in the Force to blow five, which I'll let you know when I had that. And she just went off about it, and then she turned around. She's like, look, we want diabetes to exercise, but dance is a very unpredictable exercise, so we're going to need to figure out something else for you. And I just stopped her there, and I go, Okay, let's just start again. I said, I'm Stephanie. I have diabetes. Diabetes does not have me. I dance. So you're going to have to find a way to make it work. And because I bucked up and kind of talked back basically, and was like, No, this is what I need. That's why I got the approval to go to school in Gainesville, because I had to have an endo sign off for me to be that far away. It's only an hour and a half away. She was like, as long as you come back every month and a half, I'm every three months, then I'm fine with you going to Gainesville. Wait, diabetes
Scott Benner 26:34
was changed. Was impacting your ability to move around the country if you
Speaker 1 26:38
wanted to. Yeah, within some of the insurance stuff, yes, oh, my God,
Scott Benner 26:43
that's, that's all crazy. You're old. No, I'm just kidding. I know
Speaker 1 26:50
I'm still here, yeah, so, but then I didn't get really education about, like, what insulin does and that type of I just knew you take this and that. So it was the type of thing where, if I went to a party and I wanted ice cream, I didn't have an intelligent way to dose for that, and so I would just randomly dose, and all I had was regular and NPH, and I would just dose for ice cream and not know if it was going to work or not work. And really had no idea that I could kill myself with insulin.
Scott Benner 27:20
I'm so stunned by that idea of that you didn't even know what your goals were. No, did you ever watch that TV show? Lost? You're old. You probably saw it. Yes, you remember they had to push the button. Yeah, totally. It feels like that. Yes, yeah. It just like, do this thing, and you're like, Okay, I'll, you know, I'm 20, but I'll go to, I'll go to the early bird special at 4pm and have dinner then, and, like, not eat anything and only eat this and blah, blah, blah. Why am I? But you didn't know. So you're doing this thing over and over and over again, but you don't know why. That seems very frustrating to me. It was
Speaker 1 27:57
incredibly frustrating. Like, all I and all I knew was about type two diabetes, and like all the complications that can happen because of type two and that's all that I knew. I mean, JDRF existed, but they did not do anything. There was no first diagnosis support or anything like that, where you were no and I think part of it also is because I was diagnosed in Indiana, and then I moved back to Florida. She
Scott Benner 28:21
weren't grounded anywhere, really, either, right? Yeah, I just talked to a guy in his 70, like, a 76 year old guy, and he credits JDRF for really helping him, because when they first started, it was the first time that you could get information that wasn't like at the library, right? And he was like, he's like, that really changed my life. So it would have been nice to have some information as well for you, but I just think I'm gonna go back to this for half a second, then I'm gonna let it go. But I want everyone listening. I don't want to break the fourth wall in our conversation. But wonder about how many things diabetes or not, you're doing every day, and you have no idea why you're doing them. I just think it's a deep question to look at yourself and say, How many things am I just automatically doing that I maybe don't even need to be doing, or could be doing differently or better, or maybe don't even know at all why it's happening. I just, I think it's an, it's an important thing to examine once in a while. But yeah, yeah, for sure. Okay, so you're out there with your ice cream, just winging it. Does this go well, mostly? Or Yeah, it did,
Speaker 1 29:25
yeah, it went pretty well. Yeah. It was a frustration. And you know, I would get gigantic black bruises where I had nicked a vein or artery or whatever. You
Scott Benner 29:36
should have stuck the lady in the hospital. You would have learned,
Speaker 1 29:38
well, can't help it when you hit a blood vessel, which you know is more noticeable when you live in Florida and you go to the beach all the time and that type of a thing. But you were rejecting a lot. You're saying, Yeah, well, I only, and there was no pump option for me at that time. And then so that was like a year, and I taught dance, and I and I. Went to community college, and then I got a job back in Jacksonville, where I was a part time administrator for an arts institution, and then I taught drama and dance there so that it wound up being full time between all the hours, so that I qualified for their insurance. And that made me switch to Mayo in Jacksonville, and that endo told me, because I was asking about a pump, he told me not to even consider it that the pumps were not good enough and diabetes would be cured in five years. That was back when you were 20 that was when I was 21 Yeah, that was a 99 Okay, yeah, you know, and so I'm, I'm testing my blood sugar tons. And you know, anytime that I'm dancing, I'm testing before I'm dancing, and then if I feel shaky during dancing, you know, I would check it. But really, for the most part, like I was probably coasting a little high and didn't know any better, didn't know kind of what goals I should have pre and post exercise and that type of thing. Because basically they just looked at my numbers, like, yeah, you're doing fine. And by doing fine probably meant that I was like, 6.8 to 7.2 on a 1c Yeah, with no CGM and no
Scott Benner 31:13
pump and back then, no idea if you're like, bouncing up and down or anything like that. Right?
Speaker 1 31:17
Standard Deviation doesn't exist into that. And then I moved to Dallas Fort Worth. I dance part time with a professional dance company, and then I was also working corporate, and my indo in Dallas was phenomenal, and they were involved in a ton of research. And so literally, the day or day after that, the 24 hour insulin and short acting insulin became approved in the US I had it. When was that? That was like, in 2001
Scott Benner 31:50
ish, only three years until the the cure. So you were probably right. Did you actually live thinking that that, oh, this will be over in five years? No, okay, because,
Speaker 1 32:00
and that's more of a personality thing, it's like, I can't, like, I'm not banking on anything right out there, as you know, a constantly moving target, like I'm doing the best that I can with what I have right now to set myself up for what I want to do. And so a lot of it was fighting against the current of, no, I still want to perform, I still want to dance. I still want to have that option. Because everything that they wanted me to do, from from an endocrinologist appointment was, please, just have lived the same life every day and like it was a Groundhog Day is was the solution, so that your life is completely predictable. And I'm like, That's great. That does not work for me. Personality wise. I like things that are spontaneous and changing and shifting, and I like that energy and interaction, and so I want to have that flexibility, besides the fact that, yes, I dance and do choreography, and sometimes, if I'm teaching a class, I'm dancing the whole time, and sometimes I'm teaching a class, I'm dancing very little, and I'm just doing small corrections. And yes, that is more difficult to manage, but it's what it's worth it for me, and I want to do it. And so that has been a big part of the fight throughout, is to to have flexibility built in to my diabetes management. And so I had to, you know, push against endos. That endo was great. Unfortunately, a year later, well, so I guess that was around 2000 because then 911 happened, and the company I was with went through layoffs, and I went in the third wave of layoffs. So it's like it was on my one year anniversary with the company I had uprooted my whole life and moved to Dallas Fort Worth, and I was there. And so I went on COBRA, which is very expensive, and I continued to do choreography and that type of thing and look for work. And I, in the meantime, I made a dance company, and we danced in Dallas Fort Worth for a while. We toured that next summer. We toured Florida for six weeks, and we went and danced in Norway for 10 days. And then I went back and got a corporate job because Cobra was ending, and I did recruiting. And then I went into purchasing management. And with that insurance, it required a different endo who I had a string of some bad endos in Dallas, Fort Worth. One messed up some medication so bad that they, like, took it out of my record, because it could have killed me, and I don't even remember what it was anymore. Sorry for that little tidbit, just to tease you with and then be like, I don't even know what it was. Um, so I changed doctors. I had found this great one, and he was phenomenal. And then he got stomach cancer, and he had to quit his pack practice. The lady who took over, like proceeded to berate me every time I went in and tell me how, you know I was killing myself, and I was doing this, and I was doing but there was no education that went with it. Trust me, I met with diabetes educators, and they're like, you know how? You know what to eat, and you know what this is, so you're doing fine. The lady her her way. Was to scare and intimidate people, and it was so bad that they, like, they had me go out the back door so that no one in the lobby would see my face, because I had been so angry, like, I cry when I'm angry, and my whole face was red. So they didn't charge me for that. They didn't want record of it. But they pushed out the valley, yeah, pushed me out the back door. They're like, dance away. Stephanie, yep, so and then around, I don't know it's like, 2003 2004 I wound up in the hospital with DKA. I didn't know that insulin that like, I should look at my insulin closely and know that it's not cloudy like, and that type of like, it had been kept it wasn't, it was a new vial, but the vial I got was cloudy, and I didn't know any different, like, I took it into the hospital. So, like I was I went into DKA, but I was treating myself repeatedly, and it wasn't coming down. So when I went in, unfortunately, this hospital typically deals with type twos, and I'm in the ICU, and then internist comes in. He's, you know, treating him, whatever. And then they go to give me a meal, but they're only they give me insulin, and then I eat, and I go to bed, whatever. And then they they check my insulin, my levels, before I go to bed for the night. The next morning, they're checking it, and I realized that, because my blood sugar is okay, they're not going to give me insulin for my meal, but they want me to eat breakfast. And I'm like, No, I can't eat breakfast without insulin. Like, I knew that much. And they're like, No, you have to. And I'm like, No, you don't understand. I can't. And so they're like, it's doctor's orders. Blah, blah is like, Well, I'm not going to eat. And I just, I was like, I'm not going to eat if you won't give me insulin. So then the doctor comes in. He's mad because I have threatened his authority. I don't know. I'm non compliant, clearly, so I literally drew a picture for him. I'm like, okay, so I eat. I eat. Here's the simple carbs, are in and out in an hour. Here's the complex carbs, they're in and out in two hours. Here's your fat and protein. They're hitting about four hours. They stay till about six and then they're tapering off. This is why you want to balance meals, so that you have balanced blood sugar. I was like, however, was like, however, I don't release any insulin to combat this. This is why I need insulin. And he went off, and he was angry, and he's telling and so mind you, at the time, I was primarily dancing, and so he goes off and tells me that the reason I'm in there is because I'm out partying and drinking every night. And he just went on this tirade about, clearly, you know, a a young to mid, 20 something year old woman, that's all she does, you know, and she's not taking care of her body, which, as a dancer, that doesn't quite work. I just looked at him and I said, you're fired. I said, I'll take another doctor
Scott Benner 37:39
so, but yeah, I have to tell you. Like, it's incredibly common to hear from younger people that someone just takes the leap and goes, oh, you know you're struggling or whatever, because you're out partying all the time. Like, were you out partying
Speaker 1 37:52
all the time? No, no, I wasn't. I didn't even drink it's so funny.
Scott Benner 37:57
It happens constantly. Like, you know what it almost is like, like, you know how you kids are like, Oh, great. Just lump me in with everybody. That's fantastic. I
Speaker 1 38:03
told him, it's like, no, I'm I'm a dancer, like, I cannot do that like and and perform well. And he just continued. So I said, Okay, you're fired. So then a little while later, another internist came in, rather hesitantly, like I was going to throw something at him, and clearly had been told I was non compliant. He's like, Well, why don't you tell me what the problem is? And so I showed him. I'm like, here's the graph I just showed this guy, and this is why I won't eat breakfast if you won't give me insulin, because the only normal blood sugar I will have during my hospital stay is in the morning you're going to keep feeding
Scott Benner 38:36
me. Did that help? Did the second person go, oh, okay, hold on, let's get you some insulin.
Speaker 1 38:40
No, you know what he said? He's like, wow. You know this better than we do. We pre we primarily teach type twos. He goes, so why don't we do this? I'll get your body chemistry in order, and you manage your blood sugar. I'll give you, I'll let you dose your own insulin. And then that's when we saw that. It was cloudy. And he's like, we need to get you new insulin. I didn't know because I was like, it was a new vial that came from the pharmacy, but at least you found a reasonable person. Found a reasonable absolutely and so then he's like, Okay, once we get, once I get your potassium leveled out, he's like, I'll write you a note for work that says that you need to be on bed rest for a week, and then that you do half days for the week after that. But he pretty much, he's like, we don't we don't know how to treat type ones. We treat Type twos primarily.
Scott Benner 39:20
I'd like to get a script for bed rest for a week. You think the guy that makes this podcast would let me go? I want to, I'd like a week off. That sounds awesome. So okay, so you found a reasonable person you get your cloudy insulin fixed, etc. That good. That's awesome. These kind of things continue to happen through life with diabetes. Or does it change as you like. Do you find yourself in the hospital over and over again as the years go by? No.
Speaker 1 39:45
The only other time I was in the hospital was a was shortly after I went on the pump with a bent cannula, okay? And that was the only time, and that was an easy fix.
Scott Benner 39:53
Listen, it's an interesting look at what it was like back then. And, yeah, I think because you fought back. And had a tiny bit of understanding. It's, you know, understanding that it seems like you build on your own. It's not like anybody came along and gave it to you. So I think it saves you, because you weren't even in the like the late 80s, you were like the late 90s, and still everything was janky as could be. I don't know that. It's, I don't know. I mean, the technology is better, the medications are better. I don't know if the on the ground understandings any better, but Right, yeah, you saved yourself. You really did. Because if you would have just listened to them, you'd be in a completely different health situation today. Absolutely. Yeah, yeah. If I, if I wasn't the personality that that advocates for myself, I would have been totally in a different place. Yeah, you have no idea. And do you have any complications today? No, well, good. I'm glad for you. But I mean, it's, it's literally, I know too many people were like, Hey, I did what they told me. And, yeah, absolutely, yeah, yeah. Now let me tell you about what it feels like to get a needle in your eye 1000 times, right, right.
Speaker 1 40:59
So then I moved to Indiana, yeah, and that's where Eli Lilly is, and I had a phenomenal indo there. He asked me if I wanted to be on a pump, and I told him what the mayo doctor had said, like, 10 years earlier. And he's like, no. He's like, we need to get you on a pump. And so he's the first and only indo who advocated strongly for me, and he fought with me against Blue Cross, Blue Shield of Tennessee, and I was the first person that got approved for an insulin pump and CGM. You
Scott Benner 41:27
didn't tell them, I don't need a pump. They died. They cured diabetes five years ago, right? Yeah, I'm all good. Like, did you not hear by the way, I don't know that we've ever truly cured anything, anything. Yeah, we eradicate things, usually through vaccines. When you think about what it means to be cured, like, right? Like, you're talking about, like, there's something wrong with me, and then something else is introduced, and now that thing is not wrong anymore and doesn't come back, right? I mean, I think there's, like, certain kinds of cancers that they can they can completely, like, get out of you, like, but I don't know what people think when they think cure. You know what I mean? Let me ask you a question. If they could stick a packet of cells in you that your immune system couldn't get to, and therefore you didn't need, uh, anti rejection meds, and your body just was like, boom, I don't know. They put in some new beta cells. You're making insulin. You're all good. Are you cured? Or do you just not need man made insulin anymore, because there's a device in you, right?
Speaker 1 42:29
Yeah. You know what I mean, absolutely. Yeah. If you're defining cured as the body being restored to how it originally functioned, that's not happening. If you're talking cured in that I'm not needing a synthetic insulin anymore, that's a different story, right?
Scott Benner 42:46
Yeah, and I'm probably like, I wouldn't, no one would turn their nose up at that. I don't think Correct, yeah, it's just the word is, I don't know. I think it's misunderstood, perhaps, you know, to some degree, commingled with other ideas. You know, if you could eradicate my daughter's type one diabetes, but, you know, she still had the autoimmune issue that, like, put her there. I mean, I think I'd take that as a pretty big win, you know, but it's just, it's funny that, like a doctor said to you, don't worry, this will all just be gone soon,
Speaker 1 43:14
right? Yeah, it's like a magic eraser. Don't worry, everything's fine, yeah, oh my gosh. So he just, he fought with me with insurance, and I got Blue Cross, Blue Shield to give me an insulin pump and a CGM. Before that, I was doing a minimum of eight shots a day to give myself flexibility, to be able to dance and rehearse as well as work corporate and eat when I was hungry or not really hungry. But, you know, close to it, versus just eat on a schedule, so to give myself the most flexibility. And that's why he wanted that's why he helped me get a pump. But the problem is I wound up being allergic to the CGM. It was Medtronic. I was allergic to their original CGM, the one that looks like sliced mushrooms. And they couldn't figure out why, and so I just basically dropped, you know, three to 5000 on a useless something, and then I had the pump. It was great. Unfortunately, once it got approved, he died, but endo and I wound up with his partner who had no bedside manner. He's the one who told me that I would be in this horrible position until I learned to say no to people. And I'm like, I don't think you understand. I'm a purchasing manager. I negotiate multi million dollars deals with Exxon and Dao, and I have no issue speaking my mind and telling people, no, wait, what did he think? You weren't sticking up for? He said that I wasn't prioritizing my health, but he didn't ask me what I did or what I didn't he just it was his typical speech that he gives every single patient I found out, oh, he primarily worked with gestational diabetes, and then he had to take over his partner's patients until they could get somebody else in there. And I told him, I said, well, until you see the patient in front of you, and so the one in your head, I'm not getting anywhere. You're telling me
Scott Benner 44:55
that. Basically, he looks up and goes, diabetes, I'll get. Give them this old chestnut and then tells the story,
Speaker 1 45:02
yes. Ah, there you go. Yeah, yeah. So that was that guy. And then I moved back the Northeast Florida area, which is where I'm from, and have been with the same endo pretty much for the last 1011, years. And really, a lot of it at the beginning was just like, I needed someone who would listen and who would validate and would dialog with me and kind of get over the different trauma of the different people who would yell at me as endos. And I'm like, I don't, but you don't understand that's not what this is. And that was great. Now, since insurance has been pushing back on different scripts and stuff, he would do things off label, but the last three to four years, not so much. And so I don't know how much I will stay with that Endo, because you're doing better than 99% of patients anywhere. You know, my A once I have switched over, once my Medtronic was up for warranty, I switched over to tandem. I was on the freestyle for a while because my Medtronic, you know, wouldn't cooperate with anything. So I just did a FreeStyle Libre. And then just by adding the FreeStyle Libre with the Medtronic pump, I was able to take my ANC from a 6.8 to 7.2 and then it dropped down to more the mid six range, 6.4 to 6.8 and then we went to once that was up, I went to tandems pump, and then with the Dexcom and the basal IQ, and then to control IQ. And with that, then I was pretty much maintaining about a 6.2 without a lot of work, awesome, but a lot of it is, you know, I'm tweaking my settings. He's not. He confirms it. And like every, you know, I he only wants to see me, like, every four to six months, because I'm doing it all. But I'm like, Yeah, but I'm still patient. I would like to have someone to dialog this through with and to look at which ways can we tweak it better. I may be doing better than 99% of the people, but that doesn't mean that I'm doing the best that I can do, because I would love to have as close to normal a 1c levels, provided that I'm not, you know, doing the standard deviation game of dropping down into nothingness. That one fascinates
Scott Benner 47:06
me too. Like, you're like, hey, I have a six, eight. I'd like to do better. And they go. A lot of people in this office have a 10. What does that have to do with me?
Speaker 1 47:14
Exactly. That's what I told him. I was like, I said, I'm still paying you for a session to be my doctor, and that means that you have to You're treating me where I am and taking me to the next place. You
Scott Benner 47:25
got to realize he feels like you're a win. Yeah, exactly. You're checked off the list. You're like, Stephanie done. Don't need to do anything very here's your scripts, honey. Get out of here. Yeah. No, no, that's awesome. What pump do you use? Modern day today? Now
Speaker 1 47:38
I'm on the Moby. I went on that at the beginning of March, my tandem pump went out of warranty in August of 2023 and I really adamantly wanted the Moby. I knew it was going to be coming out, so I refused to sign up for a new one. And they're like, No, you can change over for 1000 bucks. I said, or I can stay with this, and my insurance pays for it, so I'm going to wait you out. And they're like, Well, what if your pump malfunctions? You won't get a warranty. I was like, then I'll switch over to prescription benefits and do Omnipod for a while, and maybe I'll come back to tandem. Maybe I won't
Scott Benner 48:11
just, is that just a sales person or a doctor trying to shake you out of that 1000?
Speaker 1 48:15
Doctor, oh, no, not. Doctor, just tandem is tandem constantly calling me every month about my out of out of war, and I just was honest. I was like, Look, I'm going to continue with my out of warranty pump. I'm not going to have my insurance lock me in to this brick. It's not a brick, but what felt like a brick, because when I'm going to perform on stage, where do I put that that doesn't show in a costume, if I'm dancing or other times with you know, if I'm doing more of a stage play, then where does it go in that so that it's not showing and everything? And so I was like, I don't want it. I want the Moby. Can
Scott Benner 48:48
I ask you? So you wanted a small footprint and but you did, but you wanted to stick with their algorithm, because you could have gone to Omnipod. So you but you will like the tandem algorithm.
Speaker 1 48:59
I like the tandem algorithm. It's also with Omnipod. It is prescription benefit, which is a lot more money for me. Oh, your insurance doesn't cover it as well. Yes, because my insurance, my durable medical, is paid at 100% I
Scott Benner 49:12
see, yeah, so Okay, well, that even makes more sense. So it wasn't as much about like the algorithm, as it was about the cost.
Speaker 1 49:19
I knew the algorithm worked for me. So I was planning. And so I'm good with staying with I would have been fine with trying the Omnipod algorithm had it not been cost prohibitive, comparatively, I understand.
Scott Benner 49:29
Okay, so how long you've been wearing it, since March? Can you tell me a little bit about it? I don't know. You might be the first person I've spoken to who's wearing it. What
Speaker 1 49:36
do you think I love it? I mean, it's the same algorithm is the reality. So there's not a big switch for me in that way. The new option is, obviously, it's literally half the size. It's slightly smaller than an air pod case, carrying case. I personally like the clip that comes with it. Some people have trouble getting it in and out. I don't have that issue. I like that. I. Can put it in a coin pocket of my jeans. I can hook it on my jeans. I can hook it at the center of my bra, and it stays, and it's out of the way and it's not visible, because I don't have to ever touch the pump, because everything is run on my phone. I can tell you that, like, the first month and a half that I had it, I felt like I had this irrational anxiety of I had to have my phone up under me and on and fully charged at all times. I had that little freak out type of a thing, but it's not there anymore. I did have some issues with with bent cannulas, or just poor absorption with the with the five inch tubing, because when you go to insert the five inch tutor tubing, when you pull it back, it's much more stiff than any of the 23 inch tubing, so it's easier to dislodge it, or have it slightly crooked, so that when you go to apply it, it doesn't go in straight, and you wind up with a bent cannula. So on my arm, I like I tried wearing it on my arm with the sleeve, because great. I don't have to worry about where I put it in my clothes, inserting it on your arm by yourself with a five inch that was really tight, pulling back, I had a lot of Ben keynotes. There's a massive learning curve for that. As someone who been using the 23 inch for five years, okay, there was a massive learning because
Scott Benner 51:15
so with the Mobi, for people who maybe don't understand, like, you can do it like on body, right? Like, there's like an adhesive sleeve you could put on and then slide it in, and then just use that short five inch cannula, and then kind of keep everything, the infusion set and the pump right in the kind of the same spot on you, stuck to you, not having to clip it to your clothes. But that shortness of that
Speaker 1 51:37
tubing, is tubing, yeah, not cannula, five inch tubing. Yeah,
Scott Benner 51:41
sorry, sorry. So the shortness of the of the tubing is, like, kind of creating, sometimes, like creating a learning curve where you had to, like, really figure out how to put that in straight without bending the cannula. Yeah? Well, and
Speaker 1 51:52
you're balancing, because you have to balance the Mobi on your arm while you're trying to insert it on your arm, all one handed, because clearly, my elbow doesn't go that way up to hold it. Yeah.
Scott Benner 52:03
So are you wearing it with the adhesive sleeve, or do you prefer the longer tubing and just clip it to your clothing?
Speaker 1 52:10
I use the 23 inch most of the time because it allows me to move the pump to wherever I want for whatever I wear that day. So like, if I'm wearing a dress, then I can just pump it. I can cook it into my bra, in the center on the back, wherever I want, and it stays. And I don't have to worry about it. If I'm wearing shorts or, you know, jeans or whatever, I can hook it on the the waistband of that, or to the pocket of that, and it lets me change it around to I want to put it in the back because, you know, I'm wearing something that's more fitted, and so I'm going to hook it to the back of something that allows me to have the option of whether it's seen or not seen, and how accessible it is by doing the 23 inch. When it's summertime in Florida and I am, there's a water park here in my neighborhood. I'm going to go to the water park, especially when I go with like, my niece and nephew, who are like, five and two and a half. I'm going to be going down the water slides. I wear the sleeve and put the Moby in that, because it is water resistant up to eight feet for up to two hours, which is the same water resistance as Omnipod. There's a lot of people in Moby land who are like, you know, it's not waterproof, so you shouldn't do it, and this that the other it's water resistant. I'm not swimming lap, so I'm not as worried about that. But I have also, in this process of being one of the first 5000 in the US to get it. Have talked with their tech support, and I have answered, I have done some troubleshooting questions with them on their training modules and other things like that. And so as a part of that, in talking with their tech people, the tech people are shocked that people are not just wearing it 24/7 in the shower, in the, you know, in the pool and that type of thing that some people are still hesitant about that water resistance rating. And I just think that's the difference is if, if an Omnipod messes up, you just put on a new pod. If your Moby water resistance messes up, you don't know, waiting for a replacement, yeah, and that's the difference, right? Yeah, then
Scott Benner 54:10
that could scare people away. You said a couple moments ago about like you had a feeling that you needed to keep the phone, like, very close. But does the phone? Is the algorithm not on the phone the
Speaker 1 54:21
pump and my CGM talk to each other, and they work regardless. The app on my phone is my visibility into what the pump is doing, and then it's also my place to go in and enter in carbs, you know, shift into exercise mode and other things like that. Which exercise mode. I have a whole different profile for because just shifting into exercise modes with the same insulin correction factor does nothing, because it'll give you corrections and then you wind up plummeting. I also have a tendency to I like the sleep mode for their algorithm, and pretty much run sleep mode 24/7, so. Because I've dialed in my basal and I've dialed in my carb ratios. So that way, if I if I know if I go shopping, it doesn't matter if it's clothes or groceries or whatever, I drop like a rock. Okay, there is no adrenaline, there's no enjoyment for me, and I drop like a rock with that. So I know that, and so I make sure that I don't get a Bolus, and I want to make sure that I run a little bit higher before heading into that. And if I was running the normal control, IQ versus the sleep mode, it does auto Bolus is when it predicts you're going to go over, like 170 so I tend to go for sleep mode. But just because I don't want to have to pay attention to the auto Bolus is before I say doing life.
Scott Benner 55:45
So if I took your phone and threw it out the window, you couldn't Bolus, right? You couldn't see what was going on.
Speaker 1 55:53
I cannot see I did go ahead. There's a one button on the Moby, and you can use it to snooze alarms, which is really annoying that you can't actually clear alarms on it. Just snooze it. You have to clear it from the app, and that's one of the things I talked to them about their training module. Because for the first 24 hours, I thought I was going to throw the Moby off a bridge because it kept buzzing and I kept clearing it on the pump. But you actually have to, you have to swipe left on the app to clear it, so that it won't snooze and go off again another two minutes. But I can, I programmed it so that if I hold it down, I can micro dose. And basically you can decide, like every time I hold it down, that is equivalent to point one units, or point oh, five units, or point two, five units, whatever you want it to be. And you hold it down, and you do that multiple times, and then it mimics it back to you to confirm what the dosage is, and then it'll give it to you, but that's you just giving the insulin, versus actually entering in like, Hey, this is how many carbs I'm eating and and now I can see what my blood sugar is, and this is what the algorithm is predicting. So you're missing that point without the app, right?
Scott Benner 57:01
But the algorithm is still running, yes, but it can't, but it doesn't know that you had carbs if you had carbs, right? So you can, like, test with a meter, like, so if you left your house forgot your phone, you could test with a meter if you had one, and then Bolus for food based on the if you had the button, program to do something, right?
Speaker 1 57:18
Some people choose not to program that button. I don't know why you wouldn't, but I did that as a part of the setup. Okay, it's a it's an option in your setup.
Scott Benner 57:27
Well, maybe for kids, maybe people don't want to, yeah, have them like being able to just be like, hey, insulin. Insulin,
Speaker 1 57:31
exactly. Yeah, interesting. So you like it? Yes, I do like the size makes the biggest difference in the world. And I know that sound it, it sounds minimal to a lot of people, but when it's literally half the size, and I go from everyone seeing it and crazy people asking me if I have a pager still, that type of thing, to where people don't even notice it, it's a big difference. And for me to be able to perform on stage without necessarily like I don't have any issue with my CGM being seen. I don't have any issue with my pump being seen. I talk to people about it all the time. When you're on stage and it's, you know, something said in the 1800s it might pull them out a bit.
Scott Benner 58:13
Yeah, yeah. So it's nice to be able to hide it if you can. Yeah, yeah. I listen, Arden's been wearing an omnipot since she was four, and I still, like, get stuck on the idea of, like, how do you sleep with the tubing? Like, and I'm sure, obviously, it's very doable, because people do it constantly. It's interesting how, like, whatever you're accustomed to the other normal, yeah, and the other stuff seems like crazy, you know, right?
Speaker 1 58:37
Well, with the five inch tubing, I do generally wear it in a sleeve. I did play around with the five inch tubing on my stomach some and, like, if I was going to go to the bathroom, I would just clip it to the bottom of my T shirt, and then it would stay in place. You can also the Moby is so much lighter that if it dangles from it, it does not pull. Oh, okay, and it's not not a deal. It's not heavy, like the previous like the tandem x2 if, if that came unhooked and dropped, sometimes it could pull my sight off because the weight of it pulling and falling. But with the Moby, that does not, that's never right. Problem.
Scott Benner 59:13
Awesome. It holds 200 units. Is that in a cartridge? Or do you have to fill something?
Speaker 1 59:17
You feel it, you can actually see it on the side. This is better than the x2 and that is kind of an all in one thing, the way that they have you filling it. The downside is that it's very visible. So a lot of people are seeing all the bubbles that happen in every pump when the insulin warms up, and then they are they're worried about clearing bubbles, which is totally valid, but you had that same concern with the other pumps, and you just didn't have the visibility into it, yeah. So I make sure that when I wear it, I wear it where the tubing points down, so that the air bubbles are at the top of the cartridge, so that the air bubbles are not getting pushed through my tubing. Does that happen though the air bubbles come through they can, if you wear it the other direction, because the air bubbles float to the top, and so then they can come up. But that's what happens. Than any other pump that they just don't see the pump. Yeah?
Scott Benner 1:00:02
I mean, that's not an omnipot thing. So that again, like, that's the thing I've never had to deal with, yeah, like, priming, tubing and stuff like that. Like, I don't know about that. Okay, awesome. Well, I appreciate you sharing that with me. Thank you. Absolutely. What have we not talked about that you wanted to? I think that's
Speaker 1 1:00:18
pretty much it. I mean, a lot of it, my journey has been insisting that the doctors would have to find a way to make it work, and then me doing the research to say, No, this is possible. Or me choosing like, instead of just doing the four shots a day, I'm going to go to eight shots a day, so that I have that flexibility. And me choosing flexibility over what they felt was safe predictability. But for me, that safe, predictable, every day is the same, felt like a slow death, like I I like to have my days be different, and I like to be able to decide to to go dance or go Kayak or, you know, whatever, do what I want when I want, as opposed to being locked in. And there are doctors who get that, and there are doctors who, when you push back, think you're being non compliant. Well,
Scott Benner 1:01:10
it's a it's a space on their form. They know how to and how to fill that out. She's not listening to me, right? I told her that story that I tell everybody, and she didn't like it. Yeah, have you experimented with different eating styles throughout the years?
Speaker 1 1:01:26
Not really, to be honest, I am, like, ever since I was a child. I am meat driven. Like, what do you want to eat for dinner? If we go out, it's always, what meat do I want? And then the sides I don't really care about that didn't really drive my choice ever so that is what it is. That's the way I've always eaten. Since dosing insulin and all of that, I have tended to eat my vegetables first, and then my meats and then my carbs come at the end. I just stumbled upon that. I know that that does slow the absorption of that carbs and keeps to it minimizes the spike. I did not do that purposely. It's something that that's how I already ate, and it happened to be that it minimizes a spike.
Scott Benner 1:02:16
Interesting, yeah, you tripped on listen to your
Speaker 1 1:02:19
glucose goddess. And I was like, Oh, I already do that, and that's just the way that I eat, yeah?
Scott Benner 1:02:22
Not on purpose, not because someone told you, just dumb luck. That great.
Speaker 1 1:02:27
Yeah, I just felt it's nice when something actually works out on its own.
Scott Benner 1:02:34
Every once in a while, I like to just get lucky, if you don't mind, that's right, I have one, like, final question for you, do you think that the age you were diagnosed at helped or hurt? Like, what did your parents do that thing where they were like, she's an adult, or were they still very involved? Oh,
Speaker 1 1:02:49
yeah, my parents were very like, they were terrified and they were no help, is really the bottom line. Well, it didn't help that there's a lady my mom knows who two of her three kids were type ones, but they were like, they were young, and one was going through puberty, and, like, literally, the mom was sleeping in her bedroom trying to keep her alive. And so my mom was hearing all these horror stories. And then I'm like, in Texas, and I'm like, Yeah, I'm going to get my own apartment. You can't live by yourself. And I'm like, No, I'm getting my own apartment. Like, that's what I'm doing. Like, it's not, I'm not changing everything. Now, don't get me wrong, like, I make sure my blood sugar is fine. I'm going to get my own apartment. And so, like, I would come home and they would make something, and then I'm digging through the trash for the boxes to have a clue about carb counting and that type of thing. And I've been back in Jacksonville near my parents for like, 12 years, and it's really only in the last like four years, so four years out of 26 that they are consistently recognizing that we should keep the carb counts out for Stephanie.
Scott Benner 1:03:57
Okay, they're starting to figure it out now, yeah, that's the fifth coming along. Yeah, you never know. By the time they're 150 they might really have right?
Speaker 1 1:04:06
Yeah, no, but it definitely it was mine. I was the one who had diabetes. I was the one who had to deal with it, and I did. Now, it's also like, I feel like within my family dynamics, it's like, oh, you know, we don't really have to worry about Stephanie. She always lands on her feet. She finds a way to make it work. And so that's my and so with it, with diabetes, it was that I've been interested in dating, like some people, you know, it's like, it's your diabetes. And so you manage it however you do, and you let me know if I need to do anything. And then other people want to know all about it, and some of them want to overstep and and that's been different for me, because, like, my family has not typically been involved in my diabetes, so to have someone that I'm dating involved, it's like learning to let them be involved and then deciding, like, what are the limits to their involvement, and that type of a thing. Yeah,
Scott Benner 1:04:57
that's the thing you've been able to navigate. Okay. Yeah. Absolutely
Speaker 1 1:05:00
with my fiance. He actually, this year was his third year going to touch by type one with me at the conference, and he knew nothing of type one. And then once we started dating, he's like, Okay, so at my place, I need to stock Diet Dr Pepper, honey sticks, Skittles and Airheads, because those are what I used to treat lows, and then the Diet Dr Pepper, what I drink while my body is screaming at me to continue inhaling the kitchen. Instead, I give it diet doctor to calm it down. Yeah, shut up. I'm giving you something. It's, you think it's sugar. It's not really, I like that.
Scott Benner 1:05:36
You're just like, that's good enough. I'll marry you. Finally, somebody, somebody figured it out. So it's
Speaker 1 1:05:41
been, it's been really good. And I get the beginning, he's like, can you eat that? And I would, I'd like, look at him, like, I can eat whatever I want. I just have to plan for it, and I have to dose for it, as long as it's not poison. I'm good, you know. And so, like, for the first year of dating, he'd catch himself, and then there'd be times we'd be out to eat, and so, and I would ask, because someone's like, not sure if they're giving me the coke or the Coke Zero. And I'm like, yeah, no, I need you to be sure it's a Coke Zero. So I'm a diabetic and, you know, and then, like, then, because I said something about being diabetic, when I go to order my food, the Oh, so helpful wait staff decides to tell me whether I should or shouldn't have something. And then, but it's been nice that my fancy is like, no, she can eat anything, you know. So it's nice that I don't always have to be the one stepping in to advocate. So it's been really nice to have someone else who's quote, unquote, in that fight, right?
Scott Benner 1:06:29
I'm not going to waste the insulin or my carbs on regular Dr Pepper.
Speaker 1 1:06:33
That's all No, it's not worth it to me. Yeah. Now there are some things that are worth it that is not one that's worth it for me,
Scott Benner 1:06:39
right? No, no. It makes a lot of sense. Well, Stephanie, I really appreciate you doing this. You are one of the few people that I've interviewed that I've met in person, so that was interesting for me. Normally, I just, I can't even picture the person I'm talking to, but today I could. So this is kind of fun. Thank you. That was good. Yeah, yeah. I appreciate this. Hold on one second for me. Okay, okay. A huge thank you to one of today's sponsors, gevok, glucagon. Find out more about G vo hypo pen at G VOQ, glucagon.com. Forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com forward slash juice box, a huge thanks to a long time sponsor, ever since 365 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 long time 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. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe whichever your app allows for and set up those downloads so you never miss an episode, especially an apple podcast, go into your settings and choose download all new episodes. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast? You want somebody to edit it? You want rob you?
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