#1528 Klutzy Before MS
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Barbara, 50, was misdiagnosed at first but ultimately learned 21 years ago—at age 29—that she has type 1 diabetes; she has since also been diagnosed with multiple sclerosis.
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Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox Podcast.
Barbara 0:14
Hi, my name is Barbara. I'm a type one diabetic. I was diagnosed 21 years ago, at age 29
Scott Benner 0:21
if this is your first time listening to the Juicebox Podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox Podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management, go to Juicebox podcast.com, up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. 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. This episode of The Juicebox Podcast is brought to you by my favorite diabetes organization, touched by type one. Please take a moment to learn more about them at touched by type one.org, on Facebook and Instagram. Touched by type one.org. Check out their many programs, their annual conference awareness campaign, their D box program, dancing for diabetes. They have a dance program for local kids, a golf night and so much more. Touched by type one.org. You're looking to help or you want to see people helping people with type one you want touched by type one.org. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about missed boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox This episode is sponsored by the tandem Moby system, which is powered by tandems, newest algorithm control iq plus technology. Tandem Moby has a predictive algorithm that helps prevent highs and lows, and is now available for ages two and up. Learn more and get started today at tandem diabetes.com/juicebox
Barbara 2:31
Hi. My name is Barbara. I'm a type one diabetic. I was diagnosed 21 years ago at age 29
Scott Benner 2:38
Yeah, see, you messed me up a little bit while we were getting this set up. I'm going to tell you why. Like, you were like, you why. Like, you were like, Oh, I'm going to try my husband's headphones. They're like, as old as my kids. They're 30, but you sound like you're 25 Well,
Barbara 2:50
you have no idea what a blessing that is to hear, because in a few days, I turned 50, and the very next day, my oldest turns 31
Scott Benner 2:59
so that was my next question. Is you guys were like, making babies out of high school, right?
Barbara 3:04
Pretty much, yeah, pretty much, okay, but married 30 years. Wow,
Scott Benner 3:08
so what? How old were you when you got married? I was 2020 My husband was 21 No kidding, you like high school sweethearts,
Barbara 3:17
no, not at all. We met. I was 18, and that was it. We just started seeing each other, dating, and it
Scott Benner 3:28
all worked. Got married. No kidding. Obviously, it's, either it's working out, or you're so tired you can't imagine getting rid of each other. You know, I don't.
Barbara 3:35
It's probably a happy medium of both. There are times
Scott Benner 3:39
when I look at my wife and I'm like, she doesn't like what I just said, but it's not just said, but it's not worth it to her. I like this. It's much more comfortable. So that's pretty cool. See, you weren't listen was this a shotgun wedding with the kids ages in the wood? Or
Barbara 3:54
no? Well actually, so we have two children. My oldest is going to be 31 and and Julie, that's her. She was a product of a previous relationship. So she was born the day after my 19th birthday, and he was long gone at that point. And my husband, Michael, my current husband, yeah, he had been around and he had been trying to date me for many months, and I just wanted nothing to do with that. So then, after I had this, this baby, and I'm, you know, raising her as a single parent, and, you know, barely an adult myself, I just turned 19, he just, he was men with her. He just fell in love with with with her, with me, and together, we just decided to get married, and two years later, we had our little boy, Bailey,
Scott Benner 4:50
our Barb. Your life is the rich tapestry that we're gonna find out about here. There's
Barbara 4:53
many layers, trust me, very interesting. I already feel
Scott Benner 4:56
it. I feel that that youth in your voice is more like now. Really youth, it's a pension for trouble. So we'll, we'll figure that all out. I like this. Gotcha. Arden's gonna be 21 soon, and she announced the other day she couldn't take care of her puppy because of her menstrual cramps. So I'm like, when you were like, I was, you know, just sort of an adult at 19, I was like, I don't know about that, but, you know, 30 years ago, different. Yeah, you're such a lovely person that a 20 year old boy married you with a baby. Yeah. Why are you so lovely? What's going on? I don't know. You know, I don't know what makes you so
Barbara 5:34
there's, there's, there's some more layers to the story. So I was 19, well, 18 when I was pregnant, and I was kind of, I don't want to say embarrassed, but I didn't, let's put it this way. I didn't tell anyone I was pregnant. I lived at home with my mother and my brother, who had recently moved back with his five year old daughter, going through a divorce himself, and I told no one. I was pregnant until the morning. I woke up on my 19th birthday and went, huh? I don't feel very well. And that night, we had some snow, and I remember my mother and I shoveling the driveway, and I went to my room to go to bed, and my water breaks, and I'm like, Okay, now what am I gonna do?
Scott Benner 6:21
Barb, how did you, My God, we're never gonna end up talking about your diabetes at this rate. But, like, so how are you just a very slight person, or are you bigger? Like, how did your body, how did you hide that you were pregnant? So
Barbara 6:32
I gained about 15 pounds. I was probably like, 125, foot three at the time, I don't know, to be honest, spoken to
Scott Benner 6:43
your mom. In hindsight, if you've been like, come on. You knew I was pregnant, right? No, she did not know. Your mom's not like, a meth or something that would make her like, No, nothing like that. Okay, so more
Barbara 6:54
layers. I was adopted by my grandparents. So this was my grandmother, who I call my mother, because she's raised me from very little age on up, and I don't know. I don't know how anyone didn't know. Now, my husband, I remember we weren't dating right here at the time. He claims he knew, he suspected it. I don't buy that at
Scott Benner 7:18
all. Wait while you were pregnant, you were not with the father at that point during the pregnancy,
Barbara 7:22
correct? Yeah. No, he he was, he was gone when I announced my pregnancy to him. He was goodbye, okay,
Scott Benner 7:28
but, but you weren't being intimate with your husband, your current like you got to really worry about him if he didn't know you were pregnant. And that was happening. So
Barbara 7:38
my FA, my family, owned the local bowling alley, and he would come in with his friends a couple nights a week. And so me working there, he was trying to to ask me out,
Scott Benner 7:52
avoiding him. Yeah, no, no, I listen. I once asked a girl out at a clover I don't know if anybody knows what that is, but she was a cash register person I'd never been in a store so many times in my life before I figured out the right way to do that.
Barbara 8:05
My mother recently asked him. She says, so Hey, Mike, do you bowl anymore? He goes, No, I got what I wanted.
Scott Benner 8:13
Yeah, I was throwing those balls around so that, you know, you know, it's funny. I just realized the way I started dating that girl would probably be stalking 30 years later, oh, I'm sure, yep, yep. And what your husband did too, you know what? I mean, you guys gotta understand, we didn't have hinge. There was no other way to find we had to talk to people. It was, it was difficult. Hey. All right, so you have, can I ask, like, generally speaking, where in the country do you live? Ohio, Ohio. Okay, all right. This is the family business. Getting pregnant early your mom was how old? No,
Barbara 8:44
so my birth mother had me when she was 21 okay. Now, when she was one years old, she had a brain aneurysm that ruptured. Oh, my God. And now she's in her 70s now, so at the time, it's amazing she lived through her pregnancy review, there was some some brain damage, and of the, you know, things of that nature. So when she had a child, she wasn't really able to take care of that child. That's where my grandparents stepped in and they adopted me. I
Scott Benner 9:23
see Did you know your father? No, no, no, okay, wow.
Barbara 9:27
We have since found him, although he has passed my daughter was able to figure it out through one of those ancestry things, yeah, we were able to figure it out. He has since passed away. But no, I had never, never met him.
Scott Benner 9:43
I think I recently may have figured out that I have a half brother because I'm adopted. I started to get noticed. Like, you know, I'm gonna stop now. Do you know what I mean? Like, you just I'm like, I don't think, and it's never what you want it to be, or even close exactly
Barbara 9:58
same thing. Yeah. Julie discovered I have, I have a half sister, and no, there's, there's no, no reason for me to track her down.
Scott Benner 10:07
Barb, what I'm saying is, when your story is my mom, who had some, you know, brain issues, got pregnant by a guy who left her like, you're like, I don't think I need to know the rest of this. Like, it doesn't feel like unless my story is my mom was a princess, and she didn't have time to take care of me. I don't really want to, I don't want to hear about it. Okay, it is interesting. The twists and turns that that lead you to, you know where you are now. Yeah,
Barbara 10:33
yeah, exactly. How old were you
Scott Benner 10:35
when you were diagnosed? I was 29 Oh, wow.
Barbara 10:41
And it was the typical they thought I was type two. And actually, the the amusing part of that was, do you remember the show? Er, yeah. Okay, so I started to have these kind of weird symptoms, you know, I was, it was about a month after my 29th birthday. So, you know, I'm 28 years old, waking up 345, times in the middle of night to go to the bathroom. In my delusional thought process, I'm like, Oh, I'm getting old. Well, that's not old. But anyway, I had an excuse for every odd symptom, you know, yeast infections, drinking a two liter of Diet Pepsi a day losing weight. I was probably like 115 and I was watching, er, one night after the kids had gone to bed, and there was a scenario on that was a type one, and I'm watching this thinking, oh my gosh, that's literally every that's my life. So I googled it, and every single symptom, every single symptom I could recognize, except erectile dysfunction. So I'm like, Okay, it's time to call
Scott Benner 11:55
the doctor. You were still getting nice heart erections. That's why. Yeah, of course. Yeah. Okay. Wow. So what is it like Noah Wiley and Dr Mark Green, like, helped you? Or is that, am I remembering these names right? Yeah, pretty much. Yeah, yeah. I just want to throw a plug in here for no particular reason. Noah Wiley's new hospital television show on max called the pit is really good. You should check it out. Oh, I'll have to check it out. Yeah, I've never seen that. Maybe you'll get diagnosed with something else, yeah,
Barbara 12:24
well, hopefully not, because I do have a few other issues. What else is going on? So, just hypothyroidism and multiple sclerosis. When
Scott Benner 12:33
did you get an MS diagnosis? I was diagnosed
Barbara 12:36
with MS 10 years this year. No kidding.
Scott Benner 12:40
Oh, I'm sorry. How has that impacted your life? Not too bad,
Barbara 12:44
fortunately. So the thing with MS is you get lesions either in your brain or your spinal cord. Mine are my spinal cord, which what that means is it's mostly affecting my balance. So I was walking with my friend one day at a park, and we're on this boardwalk, and I'm walking like at an angle. She thought I was gonna walk off the boardwalk, just my balance was just so off. You were
Scott Benner 13:14
listing, yeah, pretty much tell people the real sadness of this. You're a professional tightrope walker, yeah,
Barbara 13:21
yeah, I had to give that up. Yeah. I'm a I'm a klutz. I'm well known way before Ms for not being very graceful. I
Scott Benner 13:31
mean, what did that feel like? What was more shocking, type one diagnosis or Ms. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pump and algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox this is going to help you to get started with tandem, smallest pump yet that's powered by its best algorithm ever control IQ. Plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandem Moby in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket head. Now to my link, tandem diabetes.com/juicebox to check out your benefits and get started today. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time in. Range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox, probably the type one, really, probably the type
Barbara 15:48
one only, because at the time, the only knowledge I knew of diabetes was growing up as a child, my dad, my grandfather, he was a type two. He actually, he had passed away when I was 15. My only knowledge of diabetes was, was him. And then when my son was born and I did the the test for gestational diabetes, it had come back questionable. Well, it was like 140 which No, now that I know that that was nothing, but at the time, you know, 140 big deal
Scott Benner 16:26
I could do 140 right now when I see it, yeah, exactly.
Barbara 16:29
So, you know I had to do, and of course, this is in the mid 90s, so you had to do the five hour glucose test, yeah, and then it ended up coming back fine. So they they labeled me impaired glucose tolerant. So they said, it's not necessarily gestational diabetes, but you know, you just should act as if it is. But they don't tell me what you do to act as if it is, yeah, go figure that out. Exactly. So that was my only knowledge of diabetes. So
Scott Benner 17:07
if I weren't you 21 at that point, yeah, you should go figure it out. Yeah, exactly. Did you say? Hey, take a hard look at me. Look like I'm figuring anything out. I'm 21 years old. I got two kids, two guys. I don't know my mom. You think I'm over here making sense of the world. Like, help me a little. I love when they do crap like that. Like, you get it, you know, it's funny you said, you said earlier, you know, I was misdiagnosed initially as type two. And you said, it's so blase, because you're obviously, it's an experience you've had, and your experience talking to other people who have diabetes, but I just had to have a conversation with somebody who this is happening to in real time. And when I said to them, Oh, listen, this happens all the time, they couldn't wrap their head around how that could be true. Oh, wow, yeah, they were like, wait, what? People are constantly misdiagnosed type two instead of type one, like, as a person who had never been ill before, never had, like, a real diagnosis of something, not really been involved in the medical community at all, I guess, like, you know, in their personal life, they were like, that doesn't make any sense. Like, you go to the doctor, the doctor does some tests. They tell you what's wrong with you. So for a week, these people were running around going, like, my kid doesn't have type one diabetes, and it was an adult child, so, and I'm the one who's going, like, no, like, I'm so sorry. He has type one diabetes. And then, you know, five, six days go by and you get a text from this person. They're like, you were right. And like, they're devastated, like, you know what I mean, like, and so it was nice that they were able to, like, bounce it off of me and not go too far down the wrong road. He wasn't taking medication didn't need, or, you know, being misdiagnosed, or hurting himself somehow, which is awesome. But like, I felt very bad for them for the five days where they had, they got to pretend, or hope, or whatever you want to call it, that this wasn't going to be that. And I felt bad for them anyway. Well,
Barbara 18:56
that's like, so, you know, I make an appointment, you know, going to see the doctor, and you know, the nurse is, you know, checking me in, asking me, you know, why I'm there. And I said, Well, I'd like to be tested for diabetes. And she gives me this look like, Okay, why do you think you need to be tested for diabetes? So I start listing everything off. She goes, Oh, okay, Doctor will be in. So you think any of them would be smart enough to bring a glucometer in? No. So doctor comes in. I explained the same thing to him. He's like, Okay, we'll order some some blood work. So I go the next day get the blood work. They call me later that day and said, Well, you do have diabetes. We are a little alarmed by your numbers. Doctor called in a prescription for you pick that up and then come see him next week. So I said, Okay, well, let me ask you this, what was my blood sugar? Now, the only really knowledge I had was when I got that call that my blood sugar was 145 when I was pregnant, right? So then she tells me it was 487 and I went. Oh, that's high. She goes, Well, we're more concerned with the A 1c which, again, I have no idea what that means. And she said, we're more concerned with the A 1c which was 15 or 14.8
Scott Benner 20:13
Jesus, please tell me they just gave you Metformin, right? They gave me Metformin. Yeah. Okay, so did you die, or did you make it back the next week? So
Barbara 20:22
I go to the pharmacy to pick it up, which is our local grocery store here, and the pharmacist knew my mother in law. He his mother lived on the same street as my mother in law, okay? And so when I go to pick it up, he looks at me, and he says, Is this for you? And I said, Yes. And he says, I'm really confused. He goes, when I saw the last name come in, I thought it was for your mother in law, not you. And he said, Why are you prescribed this? So I tell him, and he he was the one who said, you sound more like a type one than a type two. This isn't gonna work. And when the nurse had called me and was telling me these numbers, I said to her, I need insulin. She goes, Oh no, honey, they've got great advancements. You'll never need to take a shot because you're
Scott Benner 21:14
type two, and we're gonna fix it with your Metformin. It's gonna be great. You know, love it. Oh yeah, get excited. It's happening. So what do you do now? You have, you have your own thought, which is, you're not agreeing with the doctor, the nurse, correct the doctor and nurses thought, and you have the pharmacist on your side. Like, what do you end up doing? Like, this is interesting to me. Like, how do you handle this, this crossroad? Sure.
Barbara 21:37
So this was the day before Good Friday. It was a Thursday. I remember my kids had had half a day of school. She called me as we're getting ready to go into parent teacher conferences. You know, no, I have this appointment for the following week. So I'm not really thinking much of it at this point, going through the rest of my day and then go to the pharmacy pick that med up. And now I'm, I'm kind of thinking, Wait a minute. You know what's going on? Well, when I see the doctor next week, we'll, we'll just figure it all out. So my husband, my mom and I, we go to this doctor's appointment, and the doctor now suddenly the doctor's office has a glucometer, and it was like 520
Scott Benner 22:23
Jesus. Are you okay? What are your other symptoms at that point? Looking back,
Barbara 22:27
I had lost probably 25 pounds. I was going to the bathroom constantly. I was constantly hungry. The
Scott Benner 22:35
doctor didn't say, hey. You know, I don't know a lot of type twos who lose weight. No, no, not at all. No, like I got type two diabetes and dropped 25 pounds. I've never heard anybody say that to me one time. Yeah,
Barbara 22:47
no. I mean, I was a 29 year old that weighed probably 115 Jesus. He had, yeah, he, he, it was not on his radar at all. Was it an old or not jump to twice? No. I mean, he was probably maybe late 40s, early 50s. At the time, I
Scott Benner 23:07
am looking for ways to give this guy a pass. I can't figure it out. Yeah,
Barbara 23:12
my husband and I have found a different general practitioner. Yeah,
Scott Benner 23:19
I go to the pharmacist. He sounded like he knew what he was doing. Be like, Listen, if I gave you 20 bucks, could I call you once in a while with my medical concerns? Jeez, I'm still like, I have to tell you, like, this is the most frightening,
Barbara 23:30
the best thing this guy could come up with. Yeah, no,
Scott Benner 23:34
I know we just talked. We just talked over each other by mistake, but let me say this, and then I want to hear what you're going to say. Like, this part frightens me the most about people's stories. The time between you're sick, you're losing weight, something's obviously wrong, you go to a physician, you find something out, and now you're living with that wrong diagnosis. Living scares me because whether it's five days and it just ends up bursting your bubble a little bit like in the story I told you. Or if it's some people who somehow are in such a lot of situations that they live for one two years misdiagnosed, you know, during a very slow onset, or the people who are misdiagnosed and then end up in DKA, which it freakin sounds to me like you're in, like, yeah, I most likely was the story. Gets Okay, Barb. Barb, you're breaking up, so let's wait a second till you get your signal back. Hold on a second. Barb, you can't hear me. Can you? Okay? Wait. You were broke. Okay, you're back. Go ahead. I can hear you, fine. Oh, no, you were like, This is what you sounded like. I'll have I'll have Rob leave it in so, so you can hear like everyone else will hear, but you get to hear it one day, you were like, No, that's exactly what you sounded like. The signal, just so funny. But go back to that moment. Go back to that moment. Keep talking.
Barbara 24:58
So we go to the stock. His appointment, and he basically is just giving us the rundown of of diabetes, which is just the type two information. And he said, so you know it could affect your eyesight, but don't worry about it. We'll just get you some glasses. And I looked at him, I said, No, that's not how it works. And plus, my vision is horrible. I wear glasses. Over contacts.
Scott Benner 25:23
Don't worry. If this gets worse, we'll get you glasses like that's your Jesus. Yeah, pretty
Barbara 25:27
much. So then he orders another type two med. I don't remember the name of it. I remember it started with an A and it has since been pulled from the market. So he put me on that. And I remember my mom was was pushing for an endocrinologist, and so he said, Well, we can schedule an appointment. I'll refer you. This is back when you had to have referrals, because I'll refer you to an endocrinologist. You can meet with him. In the meantime, you can meet with a diabetes educator through the Health Department. So I'm thinking, Okay, we'll we'll get somewhere with some of these other resources. Yeah, so I meet with the diabetes educator a couple days later, and she had a little more knowledge, but she's still going by type two, even though she told me that her two year old grandchild was just diagnosed with type one, but she was an older woman, and I'm thinking her thought process was, I was an adult, I was type two, and that is what it was. So she wasn't even, you know, thinking type one. She was giving me all the information I would need as a type two. So basically, diet and things like that, as I'm walking around with a blood sugar of 500 Yeah, taking these pills that are doing nothing for me, Yeah?
Scott Benner 26:50
Jeez. How long does this go on for a couple weeks?
Barbara 26:53
And I'm calling the doctor's office because now I have a glucometer, and I'm testing my blood sugar and it's, you know, 500 if it's reading a number, usually it's reading high. And so I'm calling this doctor every couple days, and I'm not getting anywhere. So finally, I get a call the next day, and the nurse said the doctor was doing rounds at the hospital, saw the endocrinologist, mentioned to you, mentioned your case to him, so he said, give his office a call and he'll fit you in, you know, ASAP. Well, probably what happened was I probably wore his office down because his staff was just so bothered by me calling daily that that's what happened. Let me
Scott Benner 27:40
tell you about Barb. And they go, Oh, Barb, yeah, no, no. She's calling every 10, you know. Geez. All right, I guess so that nut jobs calling again. Let's get her in before she really, like, starts, you know, blowing us up. Well, okay, so now, what does the endo say to you?
Barbara 27:52
So I go in to see him, and I'm telling him everything, and he's like, Well, you know, you're, I think you're type one. I think it's actually type one and a half, you know, lotta. And he said, so I'm gonna prescribe some Lantus for you, and then we'll, we'll start with that, and then we'll see him in a few weeks. In the meantime, the pills aren't going to do anything for you, so stop taking those. So I said, okay, no
Scott Benner 28:16
direction about eating, or how all this works. Anything at all, nothing. Okay, just take some Lantus
Barbara 28:22
and Lantus. Okay, so no instruction on how to even administer Lantus. Wait, what? He writes me a prescription for needles and Lantus to go to the pharmacy to pick it up.
Scott Benner 28:33
Doesn't tell you how much to inject.
Barbara 28:35
Well, I think on the prescription it said, like, 20 units or something, but
Scott Benner 28:39
he didn't say, hey, Barb, you're 29 Have you ever injected anything into yourself or anybody else in your life? No, no, let's go figure it out. Huh?
Barbara 28:48
Yeah, pretty much go figure it out. So I do. I go figure it out. Fortunately, the person that it's a different pharmacy I go to at this time, and I knew the person, she was actually a parent at my kid's school, and so I'm explaining all this to her. So she says, Okay, let me at least show you how to draw up the insulin and and, you know, give gave me some some background information, because she knew that I had no knowledge other than take this, right? So I remember that night, I'm home with this insulin, and I said to my husband, I have to inject this. And he was, he was worried about me injecting it without having any actual training on it, and so he didn't want me to. And I'm like, No, you don't understand. Like, we need to take this. Did
Scott Benner 29:39
he say you don't understand. Got to take this Barb. You're very klutzy. He didn't say that. Like, you're a very klutzy person. Like, let's not get involved with this. So
Barbara 29:47
I go in the kitchen and I inject it. Because I'm like, Okay, I've just got to do this. So I, you know, injected the Lantus. Well, I had had a follow up with the primary care, so with had already been scheduled at this point. I was not smart enough to drop him yet, so I go and see him. Tell him, yeah, I saw the endocrinologist, and, you know, he said it's, you know, type one. So he gave me Lantis. So I'm I'm taking Lantus. Then he says, okay, he goes, I think you need a faster insulin, too insulin to cover your meals. So I'm going to write you a prescription for R and give you a sliding scale. Well,
Scott Benner 30:25
now this guy's got all kinds of ideas. It's interesting. Boy, that's the PCP, right? Like, that's your general practitioner who could not figure out that you had type one diabetes. But then once the endo said you had type one and this is what I think you should do, that doctor said, Oh no, here's what I think you should do, right? Awesome. Wow. Yeah, I don't know how we're all alive, but keep talking. I'm sorry. And he still would label
Barbara 30:48
me on things as type two. I mean, he had not come to that recollection that I was type one. He was just under the impression I was type two, requiring insulin, but he gave me R. And so then I go back. I'm ping ponging between these two doctors now. So I go back to the endocrinologist, tell him that the primary care who prescribed me R, and so now I'm taking both of those. They have me split the Lantus. Take some in the morning, some at night. And now numbers are starting to come down. And so now I'm starting to see, you know, starting to feel a little better, starting to see 100 right? And I think, probably, like, I think was, that was April, May, June. It was two months later. I had an A, 1c, and it was like, seven, four, okay, so I came down, you know, kind of quickly, and I ended up seeing that endocrinologist for just a few years. I wasn't real fond of the care I was getting from him, but it was better than what I had been getting, yeah, from from the primary care. I remember it was quite a struggle to get better insulin than r, and I remember he he didn't want to to prescribe me Nova log. He had said to me, he's like, I'll switch your insulin one time, but that's it. I'm only gonna switch it this once. Okay? I'm like, All right. Because in the meantime, you know, I'm researching things. I'm finding things out, realizing that R is kind of old, and now I want a pin. Because I'm using vials, I want a pin, yeah, and that was begging to get, to get a pin, which I don't understand. What the issue with that was, it was just a delivery system. It was the same stuff. I
Scott Benner 32:35
find it crazy that you're telling a 20 year old story that I've also had somebody tell me six months ago? Yeah, that's the part that I think I find maybe most baffling,
Barbara 32:47
right? Honestly, it's easier to comprehend knowing this happened 20 years ago, but knowing that this happened within a year, that's, that's
Scott Benner 32:55
sad. It just means like that. For some people, it's not every, I'm not saying every doctor, obviously, but like but for some, for some doctors, there's just, there's no ability to they just, they can't move forward. They don't know how to do it. Or, you know, I don't know. I don't know why. It's beyond me to understand why. Well, let's fast forward a little bit, because Sure, you're 50 years old, and the only intake you have here on your little note to me is that you want to talk about how your carriage changed since you found the podcast. So what was your What was it like up until then? How did you find it? What changed for you? So in 2008
Barbara 33:31
I decided to go on an insulin pump. Just for reference, I was diagnosed in 2004 so about four years in, I decide I want to try an insulin pump. So I went with Medtronic, and I had used Medtronic insulin pumps. And things were, were I thought, well, a one CS and the sevens, but everything I had been told, I was told, Hey, you're doing great, you know, the typical, you know, stuff. And at that, my current endocrinologist, who I started seeing around 2009 in his office. They would do what they call pump clinics. So once a month, the Medtronic rep would come to the office and she would download your pump, and she would go over your information, and she would make any changes that the doctor had authorized. She could make within like, 10% anything beyond that, then, you know, she would give the recommendations to him, and he'd review it, and then you make changes. Okay, so every time I would go in, it was my a 1c, were in the sevens and, oh, you know, you, you could probably stand to do a little better, but, you know, other than that, you're doing great. I knew that there were people out there with a one season, the fives and the sixes. How did you know that? Ironically, my best friend is a type one diabetic. Oh, and she's been a type one diabetic since, like, freshman year of college, and I had just met her. I've met her around the time I was diabetic. Knows she was a parent at my kids school, and her daughter and my daughter are best friends, and her a 1c. Was like, 5857, okay. And I remember thinking, even know how that's possible. And she was MDI. What
Scott Benner 35:18
you know? Why are they telling me my seven is great, if this is, yeah, right, she was MDI,
Barbara 35:22
and she was maintaining that, so she actually went on a pump when I went on a pump and telling her how great it was. But again, that doesn't necessarily mean my control was any better. It was just that, you know, convenience is what, what I was getting from it, yeah. So I had switched to her endocrinologist, and like I said, I never ate, was able to get the tighter control that I wanted. Well, no one had ever used the words Pre Bolus with me. That was the key, okay. And it was during the pandemic, when I was home with with the MS, the medications that I take to to to prevent it from progressing, I immunocompromised, is how I would be labeled. So during the pandemic, I was home from work, and I remember thinking, You know what? I'm going to try to figure this. You know, figure this out. I was on Dexcom and Medtronic, so I'm like, but my Dexcom was just a, just a don't die function. For me, I was just using it for when I was high, when I was low, but I didn't know what to do with it. I didn't know what to do with the information. If I'm low, you drink a Juicebox. If I'm high, you try to give yourself some insulin. You know, it might not allow you to take insulin, because I'm, you know, riding 300 a lot. I didn't know what to do with the information that I had, so I remember I was on a Facebook group and someone was talking about a podcast that Kevin from Dexcom had had done, and I clicked on it and listened to it, and it was yours. It was your podcast, and it was, like, it was not quite 500 it was like 480 ish, something around there, okay. And I remember listening to that podcast and thinking, wow, I could listen to this. This is this. This sounds really helpful. So I started listening to a few more of your podcast, and I'm listening and I'm hearing words that no one has mentioned to me at all, you know, Pre Bolus, things of that nature. So I start doing it, and I get down to a
Scott Benner 37:40
six nice. It's exciting. Yeah, what do you think you heard that moved your a one? See a full point. Is it just the pre bolusing? I
Barbara 37:51
believe it was just the pre bolusing, because I don't think I was doing anything different, and I don't think I had the knowledge to do anything different other than Pre Bolus, because I thought I knew everything I needed to know as it was so
Scott Benner 38:06
fair enough to say Barb, then you understand your diabetes. You know incredibly well, with the fine exception of how to time your insulin. Yeah, pretty much, yeah. Gosh, should have called the podcast Pre Bolus probably would have been more popular. You got down to that. What were you gonna say then? I'm sorry I asked you, like, how it helped you? No,
Barbara 38:25
no, that's okay. So I start listening to the podcast, some of the other episodes, and I start, you know, doing some some pre ball listing, and it's working. And I realized that there was a whole wealth of information that I didn't know. This is the key. It's the Pre Bolus saying, trying not to get your numbers once your numbers are in 300 it's hard to recover from that. But if you're talking a number that's 151 60, I could function with that. I can get that down to a 100 to a 90. So I was able to do that. And then around that time, it was time to get a new pump. So I decided, well, I'd only been on Medtronic, so I thought I'm gonna give the Omnipod a try, which last week I went back on Medtronic, so I have the 780 G right now.
Scott Benner 39:19
You went Omnipod dash? No, no. Omnipod
Barbara 39:23
euros, iros
Scott Benner 39:24
pods. Okay, so like old school, you were just Yeah, and then how come you didn't go to Omnipod five? Why'd you go to 780 G? I
Barbara 39:32
have really good insurance. When I called Medtronic to figure out what the pump was going to be, and they called me back, first thing he said to me was, Wow, you've got really good insurance. And I said, Yes, I know that. And the problem is that runs through durable medical so to get the the Omnipod five running through pharmacy, my coverage is not as great I see, and I use a lot of insulin a day. Mm. I'm using 120 to 140 units a day, so I am literally changing my pump every day. Would
Scott Benner 40:07
you tell me your insulin to carb ratio? Or do you have any like hormonal impacts, something going on,
Barbara 40:14
not that I know of. I have, I have gained a lot of weight. I was
Scott Benner 40:19
just gonna my years, my next question was going to be, if you gained weight? Oh,
Barbara 40:23
yeah, yeah, I'm like, I said I was, you know, 121 30. Now I'm 240 when are
Scott Benner 40:28
we going to listen to Scott about the GLP meds? So I
Barbara 40:32
want to try GLP meds. My insurance does not cover we go V they don't cover it for weight loss. And I have talked to my doctor about trying to get it as maybe a dual diagnosis, type one, type two, right? He keeps kind of putting me off. He this is what he told me. He told me he would do it when I went on an insulin pump, he didn't care which one, but when I went on an insulin pump, that with an algorithm.
Scott Benner 41:01
That seems senseless, but my thought here is, is that, I mean, if he can't make the case to your insurance company that a one to four carb ratio might indicate some insulin resistance, I mean, I don't know what he's thinking. Do you know what I mean? Right, right? Yeah. So, I mean, can you tell me about how many carbs you take in in a day? Yeah, it's 100 No, not a lot. No, and, and you're using how many units a day? About 120 Oh, my goodness, yeah. I mean, the GLP is a no brainer. It wouldn't matter if you were getting your insulin through a sharp stick, that you were poking a hole in yourself in and then dumping the insulin, and I would think you should still try a GLP Med, right?
Barbara 41:40
No, that. That's my plan. I my plan. Now that I'm on you did the thing he asked. I his requirements that he asked me to do, right? So once I go back for my next appointment, I'm gonna push toward
Scott Benner 41:54
for that good for you, I would imagine that if you have insulin resistance, that's a side of your weight, that you'll see a more immediate impact. But if you have insulin resistance, that is due mostly to your body compensation composition, then when you know you start losing weight, you should see your insulin needs go down. I'm gonna guess why he wants you on an automated system. He thinks, as you lose weight, your insulin needs are gonna change drastically, and hopefully the the algorithm will keep up with it, yes, yes, and you won't end up being low. I mean, he could have just said, you can start an algorithm system or not, but let's just pay attention to your insulin needs as you lose weight. And that would have been the same thing if I'm right about what he was thinking, right,
Barbara 42:37
right? That No, no, because that's pretty much what he said. So, yeah,
Scott Benner 42:41
oh, all right, yeah. Then, then that's, I mean, that's exactly his concern, is. He thinks you're gonna get low, but I don't know. Like, well, I don't know why. See, that's one of those things where people's, like, preconceived notions get ahead of their brain. Like, you've had diabetes for, I mean, 20 years, he can't just say to you, like, look, you're gonna lose weight, your needs are going to go down. We're going to have to keep adjusting your set. Maybe he doesn't want to be involved in the settings adjusting. Would that be, yeah, I don't know, but you don't need that. You wouldn't need that from him, would you?
Barbara 43:13
No, no, no, I I feel I'm knowledgeable enough now that I can, I can work with him whatever comes at me. Yeah.
Scott Benner 43:21
Are you excited for Medtronic to add that new CGM, yes, yeah. That was
Barbara 43:27
quite the learning curve, which we're talking about a week and a half now and and going back to tubing, wasn't that much of a hardship. Giving up the Dexcom and trusting the sensor, that's been the learning curve. I've enjoyed that
Scott Benner 43:44
less. Yeah. I mean, I don't that that sensor of theirs is available in Europe, right? I wonder when it's coming up. You know, it's funny. I could just email somebody and ask, but they probably can't tell me,
Barbara 43:55
right? Yeah, well, when I called Medtronic, the Medtronic rep I talked to I had mentioned that to him, and he told me he had recently tried Omnipod five for a little while, and he told me that the new sensor, and I don't really believe much of this, but he did say it is FDA approved. They're just waiting to make sure they have enough before they release it to me. That doesn't make sense. But what do I know? I'm
Scott Benner 44:23
gonna try something here. I don't think I've ever done this, but let me see this. Do you you guys have an idea on when? What's it called simplra that right? Yeah. Let me spell it right, so I don't look like an idiot. She'll be like, great. We buy ads from you. You can't spell our stuff. So let me just take a look for a second here. Okay, making sure I'm spelling right. Do you have an idea when simplera will be available in the US? I. I won't tell anybody. I won't Okay, yeah, okay, let's see what happens. Very cool. It's like a little test of my, my power, yeah? Which I'm sure is gonna come back very limited. It's gonna say something like, you haven't signed enough NDAs for this one, buddy, or I don't know, I don't know usually, or we're hoping, like, you know, I understand, like publicly traded companies can't, they can't go although I don't know, the world seems to be changing so quickly. Now, apparently you can just say anything you want out loud. But you know, they don't say, You know what we're shooting for July, because if they don't hit July, it could hurt their stock. It could also be seen as, like, manipulating the stock and stuff like that. So there's, like, a lot of reasons they don't share stuff like that. I'm interested in do they have an idea? So let's see what happens. Okay, so you have an algorithm going now you're liking it, right? I've heard very good things about 780 Do you like the way it works?
Barbara 45:59
So I'll have to admit, the first couple days, I was thinking, Oh no, what have I done? But then I went, Okay, just give it time, because I think that's the biggest issue. Is it just it needs those first few days to I'll use the word learn, although I don't think that's the appropriate word that they would want me to use, you know, to get the right information dialed in. And then after a few days, it started leveling me out closer to that 100 target, whereas those first few days it was riding me at like 141 60. And I wasn't happy with that, sure, but now I'm now it's a little closer. I mean, it's not keeping me at 100 like I would like, but it's keeping me more like 110 120 so again, it's only like a week and a half in, so I can work with what's going on, because I know it'll just, it'll just get better, so I'm not too worried about it. Okay,
Scott Benner 46:53
yeah, no. I mean, listen, I've heard really, genuinely good things about it from people actually, going back, I'm going to say, over a year ago, from somebody I met who was overseas and already using it. My friend,
Barbara 47:05
she's, she's had it for quite a while now, like, think when it had first come out, she had recently had a new Medtronic pump. So she had, they had upgraded her as soon as the 780 G was available. And so she had been using that, and she was telling me, she goes, Oh, I think you'll like it. I think you should go back. And I went, I don't know, I don't know if I can give up the Dexcom, right? You know, I was running low on the on the supplies I had back piled so I knew I had to make a choice and do something. And what I did,
Scott Benner 47:37
it's awesome. Yeah, hey, you know what? I'm gonna brag for a second here. I knew, I knew about people having good success with 780 G from Europe because I was giving a talk once in Connecticut, and a few people flew across the ocean to hear me speak nice. That's my brag. I was very nice. I wasn't. You're entitled to that. I'm proud of it. Now, in the moment, I was just shocked. I actually think I said to her, What is wrong with you? Also, it felt very pressuring. I've had situations where people like, oh, I drove 16 hours to be here, and I even then, I was like, way to pressure me. I don't think I can come through to that, like, that's a long drive. But when somebody said I flew from England to hear you speak today in Connecticut. I was like, what now? Like, cool, but now I feel like I gotta really do a good job. I wasn't really feeling any stress until you just told me you got on a plane to do this. I you know, so I only drove over, like, an hour and a half to get here. Okay. Anyway, all right, cool, we'll see you're moving along. Like, can I ask you, do you have expectations about why you gained. I mean, you gained a pretty significant amount of weight. Like, was that through, like, aging activity? Like, what do you think got you there? Combo
Barbara 48:49
of everything. I think once the MS took place and I was my activity, I wasn't walking or is active. I think that had a lot to do with it. I actually had a knee replacement a year ago, which I think was the other thing in my letter that I mentioned wanting to talk about the experience of the surgery. So I had torn the meniscus in my knee, and so that laid me up for a few months. And although I was in the two hundreds prior to that, I think it was just a combination of lack of activity, and once it started going up, it just started going up, you know, you know, aggressively, we'll say, Okay,
Scott Benner 49:35
I understand is, is weight gain? Can that be an implication of Ms? No,
Barbara 49:40
not that. No, I don't believe. So I think it's, it's a byproduct of the lack of activity.
Scott Benner 49:46
Okay, I see, oh gosh, it sounds so easy for people like, just do that. Or like, you know, if you've been listening for a long time, you'll know that. I think, like, three years ago, I'm like, I'm getting a bicycle and I'm gonna ride a bike. I started riding the bike, and I'm like, Oh, my knee. Hertz. Then I was like, I have to have a knee surgery. Awesome. And then it takes time to rebound from that. Like, you don't think, like, I still, I don't know about you, you're about my age, but I just have my nose prepared. So for all of you were like, Scott, got a nose shot. I didn't get a nose shot, but I guess I kind of, I get an internal nose shot, right? So, you know, double deviation busted up cartilage. They opened up my passageways, like the guy explained to me at the follow up. I was like, Hey, I probably should have asked before you did this, but what did you do? And he's like, oh, you know you he's like, you had a double deviation. It was like, sticking out on both sides, blocking your airway. You had an overgrowth of soft tissue that had to get removed. It was blocking your airway. You had cartilage that was busted up and re formed a bit it was blocking your airway. And he goes to and at the bottom, I opened up your nostrils and tacked them down to make them wider. And I was like, Oh, awesome. Is that why my the top of my mouth is numb? And he goes, Yes. I was like, Oh, awesome. He goes, that should go away. I'm like, okay, whatever the reason is. I'm telling you what they did is because 20 years ago, if I would have had something like that done, like, three days later, I would have been like, Let's go like, I would have just been up and moving, and I'm now two weeks removed from it today. Today's two weeks. I'm like, Oh well, my digestion is just back to normal now from the medication they gave me because they put me on a bunch of antibiotics. Like, I'm like, at least my stomach feels better now. And like, and I was the first five or six days I was exhausted. Like, you know, like, like, I'd sit here, get done working, and like, just try to work. And I'd be like, zoning out. Like, some people will listen and go, Well, yeah, he had surgery on your face. But I've been a person that my whole life, like, I would have run through that wall, no problem. And this time I'm like, God, like, if, if I go to have something else done, I'm gonna have to build real recovery time into that. I guess that's the age I'm at now, you know, and you don't think about that as it's as you're getting older, but I am thinking about it now, and, you know, it makes perfect sense to me that you get, MS, you slow down, you know, you have a problem with your knee, and all of a sudden, like it turns into five years later, right? Yeah, that sucks.
Barbara 52:05
The irony of the whole thing with the knee was I had bought a treadmill, similar to your bicycle story, staring at you. I bought a treadmill, and two weeks later, I can't walk. My knee hurts, so I make an appointment for the doctor, and I walking down the hallway to see my primary care, and my knee snaps. Well, it that was the meniscus did a full tear, and it just snapped like a rubber band. Oh,
Scott Benner 52:34
it's terrible. I'm sorry. Yeah, listen, I got a long note from my brother the other day, and he's like, my feet hurt so bad. He works like a, like, a stands on a concrete floor, you know, and he's, and he's getting older now, and he's like, I can't believe this is happening. He's like, he's like, I can't even stand up. And I was like, Yeah, you're old. Like, you know, like, you have to go buy better shoes and get insoles in them. And, you know, his text reminded me of the Oscars were the other night, and that Mick Jagger gave out an award. Now, I don't know how old Mick Jagger is. He's in his mid 80s. Maybe he's an old man, you know, and he comes out and he's like, he looks old, but he's still full of life, and, you know, he's all right there and everything and but I looked down last like he is wearing the craziest pair of old man sneakers I've ever seen,
Speaker 1 53:21
these big, ugly, black sneakers.
Scott Benner 53:24
Anyway, it's coming for all of us. So what's your antic like? What's your expectation you're going to start a GLP? You think you can stick to it and then look up a year from now and have lost, you know, a fair amount of weight? Yeah? I mean, that's, that's what I'm hoping for. Yeah, I think you can do it. I know a person who lost 100 pounds on it in about a year and a half. So my
Barbara 53:45
daughter actually has been on wegovy, and she has lost 40 pounds on wegovy, and probably, well, she had started on her own, and then went to wegovy. So she it's been about six months now, and she's lost 40 pounds. And then, of course, in January, her health insurance provider dropped bucovi, so she just picked up a semi glutide from a compound pharmacy the other day. Yeah, so her next injection will be one of those.
Scott Benner 54:17
Glad she was able to keep it going for herself. I have to tell you, it's changed my life so drastically and for the better. Like, if someone took it from me, I mean, I would go to great lengths to get it back. Oh
Barbara 54:29
yeah, I've definitely been following your story, and I've shared the podcast with her, where you, where you've been dying that. Oh,
Scott Benner 54:37
I'm glad. Listen, I'm 60 pounds, like I seem to be, I don't know if you've installed is the right, like I'm at 60 pounds now I do. I think I have more weight to lose, I think I have some fat to lose, which I'll obviously, like, you know, you know, it'll, it'll make my weight drop down. But I don't think it's a lot. I think it's more about body shaping now that where I'm at, yeah. And just, it's just been such an awesome tool for me. The week that I didn't take it for my surgery, I gained like, five pounds, wow. And I didn't need any differently. I just started gaining weight. And I was like, Well, this is just awesome. And by the way, I mean that both ways, the medication is awesome and, and I mean the sarcastic awesome about like, I can't believe that without this, like, my weight just starts going up again, I don't know, like, I'm grateful that it exists and I'm disappointed that that's the reality, I guess, is both sides of it. Yeah,
Barbara 55:29
I definitely look forward to being able to try it. I will, I will try my best to get that prescription so
Scott Benner 55:36
she's going to the compound pharmacy because it's not being covered. She's paying cash. Is that a thing you've considered doing? Or you think you can get it covered? I'm
Barbara 55:44
going to try to get it covered. If not, I can try the compound pharmacy. Now, the issue with the compound pharmacies, it is no longer considered. Ozempic is no longer I forget the term, yeah, you know where I'm going. I wish
Scott Benner 55:59
I understand. I don't know the words, but it's if it's no longer considered something, then they then they're not allowed to compound it anymore,
Barbara 56:08
exactly. So when she picked up the compound, she said there was a long line of people picking it up. And so they're going through every so often in the line, making this announcement, saying the last day that we can make the current formula is like April 21 they're currently working on submitting another formula that's slightly different to get the approval for that. So they were telling everyone, the next time you pick up, you'll be fine, but then we should have an answer for you at that point, if we were able to get the approval for the next formula or not.
Scott Benner 56:46
Yeah, it's something about the availability of it. I don't know the phrasing right. If it's available commercially, they can't compound it. But if it's, if it's hard, like I guess, I guess it's about shortages. So if there's a significant shortage supply, then they can maybe temporarily be allowed to produce until the supply is back. And I did just see one of the big companies announced the other day, there's no shortage. I didn't realize that was a business decision when they said that they're saying, oh, there's no shortage, which means compound pharmacies can't make it correct. I see, well, you know what's gonna happen. I'm seeing it happen all over the place. Like, you're gonna see companies making generics of it, but, yeah, oh yeah, or biosimilars, or stuff like that. Like, that's all gonna happen, I think, quickly. And if you listen to Dr ham D's episode, yes, he seems very certain that newer forms in pill form, we're gonna be just as effective as the or maybe more so than the ejectables, one day, and I, and I actually remember saying to him something like, like, in the future, and he's like, not as far in the future as you think. So it's like, all right. Well, that's good. So because I do think it even being injected slows some people down. You know, some people aren't thrilled getting injected with stuff. And it makes it seem less approachable, I guess. But I think, I mean, obviously it works so well for so many people. I mean, a lot of companies are going to want to get in on it, and so I think there should be a lot of availability moving forward, but that doesn't help you today. Like, you know what? I mean, like, you're, you're in the situation, you're right now. You don't want to be waiting two years or whatever, right, right? Yeah, wow. What, uh, what have we not talked about that we should have,
Barbara 58:19
like, I said, I had, I had knee surgery. I ended up having to have a knee replacement after all that, because it
Scott Benner 58:26
was so damaged. Yeah, so what's that like? Doing that with type one? Some of your
Barbara 58:29
episodes over the years, you've talked about people that have had surgeries. You've referenced, I think, a surgery or two that Arden had. So when I went in for the pre op stuff at the hospital, I kind of knew what I should what I should mention. And I had talked about, you know, wanting to make sure that I had my phone in the operating room so they could monitor my Dexcom. Wanted to keep my Omnipod running, things like that. And they had checked with the anesthesiologist. The anesthesiologist said, Oh yeah, it's great, you know, we want to, you know, make sure we keep things running. So I said, Okay, let me know what, what do you want from me that day? How would you like me to place these sites? So they had given me all sorts of information, you know. He said, you know, just put them on your arms. We'll have your your phone, make sure it's on lock, but I'll have your code just in case. Everything seemed to go great. I saw my endocrinologist right before I mentioned to him the discussion I had, and he had even said to me, he's like, that's exactly what I would advise you to do. That's the plan that I would put in place for you. And I said, My only fear is that the day of surgery, they changed the plan. And he said they're not going to do that. He said, if they told you you're going to keep your pump on, you're going to keep your pump on, well, you know where I'm going with this, right?
Scott Benner 59:57
Oh, hi, welcome. Good morning. Let's get your pump off. Wait, I talked to the guy. What guy we don't know that guy, right? Yeah, it was more as we're
Barbara 1:00:04
wheeling into the R Yeah, yeah. They had checked my blood sugar against a Dexcom, and it was 142 to 143 i They were so impressed at how close it was. They anesthesiologist and his nurse. They were making jokes about doing selfies with my phone and the or, I mean, it was great banter back and forth. It seemed like everything was going great. So then the nurse says, Okay, we're ready to go. Looks at my husband said, you know, give her a kiss goodbye, and we'll, we'll keep you posted. So they're walking him out, and they start to wheel me, and the anesthesiologist says, Okay, it's time to turn the pump off. And I went, wait, what
Scott Benner 1:00:49
were you guys not just out in the hallway joking around about how great it was all work and everything. You don't remember any of that. Do
Barbara 1:00:56
you know I can't do that? And they said, No, we'll, we're going to monitor everything. Remember? He said, so we'll, we'll take care of everything. Well, I decide I'm not comfortable with just suspending it because I knew what was going to happen. So what I did, I did suspend it, although I shouldn't have. I put it on a three hour, figuring, okay, when it's done, when three hours are done, at least. If I don't know where this PDM is, it's going to turn basal back on. You know, if they lose it, or whatever the case happens to be, because of this point, I don't have as much faith in them as I did 30 seconds previous. Losing faith as I'm being wheeled into the alarm. So I put it on three hours. Next thing I know, I'm waking up. The rumor I was 140 wheeling in, I'm waking up. And I can hear them say, the anesthesiologist wants to know what her last blood glucose was. And they said 480 Oh, my God. And I went, wait, what? I'm 480
Scott Benner 1:02:05
Yeah. How'd you guys screw this up? Jesus, something going
Barbara 1:02:09
through the numbers and looking I see where I hit 450 and when I hit 450 that's when they gave me some insulin in the IV, so it kept me steady at 450 and I got up to 480 but had they not done that, I mean, who knows what I would have been because we're talking three hours without any insulin. Yeah, and distress on my body, of course, right,
Scott Benner 1:02:36
right, right? They don't know. Trust me, they don't know. They don't care. What they know is you're not going to die in three hours without this insulin. And they think that's better. Like, I don't, I don't know what they you know, what? I've had doctors on. I've asked them. They're never very clear when they talk about it. They're just like, well, you know, better high than low, like, that kind of, like, simple stuff. And, you know, like, like, why not just let the algorithm keep what? I mean, what would it have hurt to just set your target temporarily to 200 exactly, you know, exactly.
Barbara 1:03:03
Now, remember, I didn't have an algorithm at the time, okay, so I didn't have anything like that or, I mean, we could have done that with basal. I mean, if they were knowledgeable enough, I would have gladly reduced my basal to 50% Yeah,
Scott Benner 1:03:17
just kept something running. Also, you have an IV, and if I start to get low, you can give me dextrose. It's not a big deal, you know? It's not a big deal. And you
Barbara 1:03:26
and you can see the trends, because you have my phone in your hand that you just double check to make sure it's accurate, right? Hahaha,
Scott Benner 1:03:34
we should take a picture with it. Look how accurate it is. Remember all that again, out in the hallway?
Barbara 1:03:40
Yeah, exactly. That sucks. My surgery was actually outpatient, so I was scheduled to go home that day, but in the meantime, because they want you up and moving, so they put me in a patient room after recovery, and the idea was, give me about an hour, give me something to eat, regulate the pain meds, and then physical therapy would come in, and they would get me up and moving, and then, you know, slowly, get me, get me to the car and home. So immediately, when I woke up and I knew what was happening with my blood sugar. I'm I want my husband, and that poor man, he was walking down the hall, he heard them say, Okay, turn your puff off. Michaels,
Scott Benner 1:04:22
like, Am I in charge of getting your blood sugar down? I think I am, right. Yeah, pretty
Barbara 1:04:27
much. So they immediately bring him in. Now, they want me out. They want me in that patient room. Because they even said to him, he goes, how quickly can we get her to a room? She's under 500 we can, we can release her to the room now, yeah, because he's figuring, once we're in the room, you know, we can get you out
Scott Benner 1:04:45
of their face after my nose surgery. Like, I don't know if I knew which way was up. And the guy was like, All right, well, we called your ride. I'm gonna call me right? I'm like, I can't see all the walls yet exactly,
Barbara 1:04:54
okay. Well, I get into this room and I. Again, I'm expecting the nurse in the room they are in to help. They he didn't even know I was a diabetic. Yeah, so we get in the room and he's, you know, doing vitals. I still have some oxygen going, some coming out of the anesthesia I had been intubated. So he's got some some ice chips going and showing me this breathing thing that they wanted me to do every 10 minutes. And then he's putting some more pain meds on board and giving me some Zofran, because now they're going to bring a tray of food in so I can eat. And so they bring this tray of food in, and they uncover it, and it was the worst food ever. It was salisbury steak with mashed potatoes, peaches and heavy syrup, pineapple, white bread and an Italian ice an iced tea. Wow. And my husband looks down at this tray, and he says, that's a diabetic tray, because he had talked to them when they came out and gave him the she's out of surgery, her blood sugar was high. He had said, she'll work with getting her blood sugar back under control. But can you make sure you give her a low carb meal? Because she's not going to want to have a heart high carb meal. Also,
Scott Benner 1:06:18
she's 450 and you've had her insulin off for three hours, and there's a lot going on here. And the nurse goes, dial, what now?
Barbara 1:06:25
Yeah, right, exactly. Then he reaches he goes, well, well, why would she need a diabetic meal? And he my husband, said, well, she's a type one diabetic, and her blood sugar is 450 so he goes, Well, you won't be needing this. And he reaches over and grabs the little cup with the sweetener packets,
Scott Benner 1:06:42
but he took the one thing that you would have helped you. Why would she need that? Let me just bang my head through the wall, and then I'll explain it to you. Hold on one sec. Well, listen, I again. I don't think this is even specific to diabetes. You know what I mean? Like, sure, you call a place and say, Hey, listen, I get my car worked on. This is the same problem. Hi, I'm having this problem with the car. Let me note it for you. And then it all down. Like, great. You show up with the car. They go, what's the problem? I'm like, You know what the problem is? I called this week. Well, I don't know. Tell me again, to tell you again. Like, what did I tell the last person for like, like, you know what I mean? Like, then it happens, and the mechanic comes out and goes, What's the problem? Like, Jesus, I told her, I told him, I gotta tell you now. Like, why am I telling everybody if, like, why don't you just let me fix it? Like, like, right? And then that's the feeling you get, like, no one's actually paying attention. There's no How do I mean this? You want to think that there's a comprehensive web of communication in whatever you're doing, whether it's at your doctor's office or getting your car fixed or somewhere else. But the truth is that's not the case, and that most things are limited by the ability of the human being you're talking to to do their job, understand your needs and communicate them. And I just don't think that generally happens again. I don't think it's specific to your knee surgery or the fact that you had type one diabetes during it, or anything like that. I just think this is a limitation of human beings. I
Barbara 1:08:14
agree. Also, I had a second surgery a few months later. Ironically, I had broke my toe a week before the knee surgery on the other foot, and I was not going to hold up the surgery for treatment for a broken toe. So in the meantime, I had to have surgery to repair that that toe, and it was a different hospital, and I went in knowing what could happen. And so I'm going to have a very nice conversation with that anesthesiologist. Then an anesthesiologist says to me, my husband is a type one. He's on T slim. I know exactly what to do. My blood sugar stayed 118 the entire surgery, right? That's been
Scott Benner 1:08:55
my experience too. It's like once you bump into somebody that knows what they're doing, then it then all the things I just said, that's all gone now, now you just have somebody at the point of contact. Who knows what they're doing. Is the biggest thing other than that. I should have recorded what I said to the first person at the car place, and then just when I walked up to the next person said, Hey, what's going on? I should have just pushed play and held my phone up, yeah, because you're wasting your breath till you get to the person that's going to be actually doing the work. And then now it's important for them to know. And if you get lucky and you know, you get that situation you have with a toe surgery, then great, somebody knows what they're doing. And Bing, bang, boom, nothing to worry about. But the truth is, is that if you're going to be involved with medical care and you have type one when people say you have to advocate for yourself, that's a very polite way of saying you have to re explain someone's job to them as it is pertinent to you. Every time you look someone in the face, that's your job. And by the way, they may not understand or care or even put what you're saying into effect, or once they hear you, they might just take the Splenda from you, the one thing on the tray that may not have made your blood sugar go. Yeah, exactly, yeah. No. It's, I mean, listen, it's good to know, because you're, you're gonna get into a situation like this eventually, and you really do need to know how to, I'm gonna say advocate, but I'm gonna, I think what I mean is explain people's jobs to them, specific to your details. It's just the sad fact of all this, we're not there yet. You know, everything's not interconnected, and maybe computers and AI fix this. Maybe it makes it worse. I can't wait to see what happens right now. The, I mean, to use a, I guess, a saying from the 50s, like my mom would have said, is, like the left hand doesn't know what the right hand is doing. Yep, exactly. Police your toe, your toes, all better you need, oh yeah, what's the bounce back time from a knee surgery like so the
Barbara 1:10:44
knee has been pretty good. I was off work for 12 weeks. I work retail on a concrete floor, so I was off for 12 weeks. Did some physical therapy, and it took about a year. They had set I still had some stiffness. I mean, I was able to move around and things of that nature. But they had kept saying, well, give it a year, because about six months in, I'm like, Well, I still have some stiffness and stuff. And literally, I think it was January, I went I realized my knee is great. It's almost back to normal. And it was a year ago last month. So yeah, it's pretty much takes a year. It is what
Scott Benner 1:11:22
it is. Like one day you just like, it's boring. But I was told I had arthritis in my toe, and they were gonna clean it out. But then they got in there and I had to get, like, micro needling surgery or something like that. And when I came out my it was stiff, like, it was hard to bend. And some days, day after day, I just sit here trying to curl my toe up, like, you know, and I was like, God, this is never going to work. And now I don't remember how long ago that surgery was, but my toes good. So, yeah, yeah, just sometimes it's just it takes longer than than you want, and then, like you said, you wake up one day and you're like, oh, doesn't hurt anymore. Awesome. So goodbye, all right. Well, Barbara, you were terrific. I appreciate you doing this with me. I went over time a little bit, but I enjoyed hearing the rest of your story. I can't thank you enough for doing this, and I'm thrilled that you found the podcast and it was helpful for you. Oh yeah,
Barbara 1:12:10
I have to thank you, because it has, it's been life changing. I mean, I know I've hear other people, you know, say that periodically, but it genuinely opened up a whole world of what to do with the data and with the numbers. And my a 1c are now under six, it's great. Yeah, I
Scott Benner 1:12:28
couldn't be happier for you. And it's very kind of you to give me some sort of credit. And I think everyone should, is what I'm saying. Yeah, anyone who's ever come on this podcast and not thanked me, I think you've, you've really missed an opportunity. So,
Barbara 1:12:42
my God, well, I appreciate everything you do. And I have heard every episode. I listen to it every day, and I've gone back and listened. It was about close to 500 episode when I started listening, and so I went back and listened to those previous ones. And yeah, it's, it's been life changing. You're caught
Scott Benner 1:13:01
up. You've listened to 1400 episodes of this podcast. Yeah. Barb, awesome. You're my favorite person. Well, thank you to whoever I said that to in the past. Don't feel slighted. Barb, stepped up. Okay, okay, yeah, no, this is awesome. Hold on one second for me, sure.
Thank thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night. Whether it's their meal detection technology or the Medtronic extended infusion set. It all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox the podcast you just enjoyed was sponsored by tandem diabetes care. Learn more about tandems, newest automated insulin delivery system, tandem Moby with control iq plus technology at tandem diabetes.com/juicebox there are links in the show notes and links at Juicebox podcast.com this episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes? Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? When I created the defining diabetes series, I pictured. A dictionary, in my mind, to help you understand key terms that shape type one diabetes management. Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean. Go get your diabetes to find Juicebox podcast.com go up in the menu and click on series. The episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com. You.
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