#1205 Pocket Underwear

May 23, 2024Scott Benner

Diane was diagnosed in her late fifties, her father also had type 1 diabetes.

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Scott Benner 0:00
Hello friends and welcome to episode 1205 of the Juicebox Podcast

Diane's father had type one diabetes, and she thought that she had, quote, dodged that bullet when she wasn't diagnosed at all through her 20s 30s 40s. But in her late 50s, she got type one. Today we're going to talk about her story and some other autoimmune issues that she has. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. 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/juicebox If you're a US resident and you have type one diabetes, where you care for someone with type one, I need your help to help. How will you help help? Let me tell you, you go to T one D exchange.org/juice. Box you complete the survey it takes about 10 minutes, and then the answers that you give to the questions in the survey. They help type one diabetes research. So you don't have to go to a doctor's office. If you want to help with research. You don't even have to leave your home. T one D exchange.org/juicebox help others help yourself. This show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash Juicebox Podcast and started using a contour meter because of its accuracy. But she continues to use it because it's adorable and trustworthy. If you have diabetes, you want the contour next gen blood glucose meter. There's already so many decisions. Let me take this one off your plate. Contour next one.com/juicebox I am quite literally covered in cozy, cozy Earth. I use their towels. I use their sheets. I use their sweatpants and their sweatshirts. And I just got a pair of shorts in the mail, which I haven't even opened up yet. Maybe I'll do that during the ad later. Cozy earth.com use the offer code juice box at checkout to save big on everything in your cart. Cozy earth.com use the offer code juice box.

Diane 2:28
My name is Diane, I am 59 years old. I'll be 60 in December. I'm a registered nurse. I was diagnosed during COVID. May 29 2020. I am the daughter of a type one diabetic.

Scott Benner 2:47
Okay, your father with a still mother? No,

Diane 2:51
he passed away from a heart attack in 2013 2013.

Scott Benner 2:53
How old was he? Do you remember?

Diane 2:58
He was I've been the 171 or maybe 72? I think he was 72 because he was born in 1941. So he was somewhere in their early 70s.

Scott Benner 3:13
How long have he had type one?

Diane 3:14
He was diagnosed at the age of 14.

Scott Benner 3:17
Oh wow. And you were diagnosed like in your late 50s 56. And that interesting. Okay, any other type one in the family?

Diane 3:28
No type ones but lots of other autoimmune disorders, for instance. So my dad's father and his brother marry two sisters. So all of our cousins are once removed. I have two cousins that had vitiligo pretty significantly. And then my dad's sisters have some autoimmune disorders. I'm not quite sure what they are. One of them is the type two diabetic, but they have some autoimmune disorders to that I found out later was after I was diagnosed. Do

Scott Benner 4:04
you have any others? Oh, yes. Well,

Diane 4:07
so I was diagnosed with a goiter when I was nine years old. So I've been on. I've had hypothyroidism since I was nine. So I've been on medication for that. I had no other autoimmune disorders until I was diagnosed with the type one diabetes. I actually had Pernicious anemia going on at the same exact time. And it was noted that I was macrocytic meaning my red blood cells were enlarged. When I was diagnosed with the type one, and the hospitalist that was admitting me she noticed that I was anemic. And I mentioned that I was anemic but didn't follow up. She didn't she just asked me if I'd had any abnormal bleeding or anything like that. And I I said no. And that left it at that. So um, then I also have autoimmune hepatitis, but I, which I got later diagnosed with. That was the Oh, and then I have some vitiligo as well, that's going on to

Scott Benner 5:15
when did the pernicious anemia start?

Diane 5:19
So the pernicious anemia actually was occurring at the same time I my type one diabetes was occurring, but it didn't get diagnosed until I started having significant neurological symptoms. The type one diabetes hit me hard, but I was prepared because I'm a registered nurse and I grew up living with a type one diabetic and saw the trials and tribulations that you went through. And so I was familiar with the type one diabetes and I was fine. I mean, I wasn't fine with it. But I mean, I, I had come to grips with it. But the pernicious anemia really scared me a lot. Tell me why. I started with having balance problems. And I My balance is as I've gotten older, my balance isn't always been that great. But I noticed that my balance was really bad. I could hardly even walk straight. I developed a small tremor in my left hand and I thought maybe it was just, you know, like, my blood sugar's if they got low, maybe it was that I became so depressed and anxious. I, I was crying every night. And unfortunately, too, we had a dog that passed away during COVID as well. I've always been a nurturer. And we've always had a dog and I didn't have a dog and my husband was like, let's not get a dog for a while because we you know, we're older and we have a travel trailer and motorcycle and he's like, got like to enjoy some of these things first, before we get another dog. And I was crying every night. And he's like, okay, we can get a dog. Oh,

Scott Benner 7:09
you got one cast iron. You can have mine, either of them or both. It doesn't matter to me. I'll bring them to you even.

Diane 7:15
I would if I could. I would I would have a dog rescue. Oh, my husband's like, no, no, no, no,

Scott Benner 7:24
I have a brand new bag of dog food and $50. I'll give you along with us dogs. What do you think of that? get you going? Oh,

Diane 7:30
that sounds? That sounds wonderful. Yeah, sorry. Yeah. All these neurological problems. And I couldn't even got to the point where I couldn't even share. I couldn't take a shower with the shower door closed. I was so anxious. I went for a routine eye exam. And my eye doctor said you have nystagmus and that's where your eyes your huh. And I said, Oh, I do. And he said, Well, you don't seem surprised by that. I said, Well, you know, I'm a neuro nurse. I know it's Nystagmus is

Scott Benner 8:00
Oh, yeah, they didn't show.

Diane 8:03
Yeah. And so he said, Oh, I'm just gonna send a little email to your, your primary doctor. And I said, Okay. And so then my primary doctor called me and said, You know, I got this email from your eye doctor, and I'd like you to come in and get checked out. My primary doctor wasn't able to see me right away. So I went and saw one of her colleagues who's a wonderful doctor, and he, you know, was doing a physical exam and I had no reflexes. And that's one of the symptoms of B 12 deficiency is you lose you're like, when they hit the hammer with your knee you lose your reflex. Yeah. And he listened to my heart and he goes you have a heart murmur. Have you ever been told that before? And I said absolutely not. I religiously workout three days a week I've never had a heart murmur he goes yeah, you have a pretty significant heart murmur I'm really upset me

Scott Benner 9:01
Yeah, no kidding.

Diane 9:01
You're out I'm gonna have him drop a bunch of labs and I'm I'm gonna it was like a Thursday that he saw me goes I'm gonna have them draw some labs and we'll go from there.

Scott Benner 9:12
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Diane 11:49
So my labs started trickling in, and I have, you know, my chart through Providence, which I work for. I started seeing my labs and I saw that my V 12 was really low. I would think I was what I was seven and low normal in the United States is I think 200 or 300. And I was like oh, so I sent him a text. I said, Hey, I see my be 12 Slow. Do you think I could get smoothie? 12 shots deals. Yeah, I'll make arrangements with my office staff. And then more of my labs were trickling in. And I still saw that I was macrocytic meaning my red blood cells were very large and immature. He by Sunday evening, he texts me and he says I think you have Pernicious anemia. And I thought Pernicious anemia. I can remember something from nursing schools that have to do with vegetarians.

Scott Benner 12:50
So I'm looking here just so people can catch up a little bit. Typical presentation of Pernicious anemia includes fatigue, parallel appearance, tingling sensations, depression, alterations and visions and smelling urinary incontinence. psychotic episodes, weak this involuntary movements due to the beats while deficiency. You had all that like you had a lot of that stuff going on.

Diane 13:10
I had a lot of that stuff going on. Yeah, crazy. Yeah. So I had all these neurological symptoms. And then when he came back, I think you have Vitol deficiency, pernicious anemia. I started doing research and I saw one of the number one symptoms was a heart murmur. So and then all the stuff that I was read, of course, you know, I'm a nurse, so I immediately start educating myself on everything. Even when I became a type one diabetic. I, I did so much research and that's how I found your podcast. Cool. I never listened to podcasts before. I mean, I've had lots of people talk, I hear people talk about them. During the pandemic, especially a lot of people were, you know, listening to podcasts. Especially when it comes to my house I've always in because I'm a nurse. I always when I come across something I don't know I dive right into it and become educated familiar with what's going on. Are

Scott Benner 14:16
we just Googling type one diabetes? Or how did you? What was the way you thought to figure it out?

Diane 14:21
I don't know. Exactly. I found your podcast. I think I was just trying to find things to keep me busy during the pandemic. You know, everybody was on lockdown. There was a couple of podcasts that I was listening to. And I came across your podcast and I started listening to it and I was just like, oh my gosh, this is amazing. I love this. And I started telling everybody about it. When I was having all the depression problems before I was diagnosed with the B 12. And I started having all these depression problems and anxiety and then of course being a health worker trying to wrap my head around doing the whole pandemic stuff. I work where I work was saying how we have counseling, you know, for health care workers we have for employees, we have counseling, you can do it all online. And so I tried to find somebody to talk to you. And I found somebody I, you know, I kind of wanted to find an older woman my age, and I couldn't seem to find anybody. So but I did find a young woman, and she talked to me one session, and she was just like, well, I don't really kind of like, I don't know what I really would do for you. We just didn't connect. So when I was in the hospital, and I got diagnosed with the diabetes, of course, being in my 50s, and I was I was overweight. The hospitalist immediately started talking to me about type two diabetes, and how my primary doctor would follow up with me and talk to me about that foreman. And I, in my mind, I said, No, no, I am not a type. I'm not a type two, my fasting blood sugars that have always been, you know, high 90s, maybe 101, but never higher than that. And I had just had a physical. About two months prior to being diagnosed. I spent two nights in the hospital, you know, teaching me how to give injections, which I already knew how to do course, mostly, I was just visiting with my friends, the nurses that were my nurses, were people I already knew. And I spent two days in the hospital during COVID. And then I got discharged on a Sunday. And then the following Monday or Tuesday, I had a virtual appointment with my primary doctor. And she immediately said the same thing. He said, You don't just go from normal to having all these symptoms. I'm gonna test you for type one diabetes. Diane,

Scott Benner 17:04
is that what got you was just the medical background. It wasn't that your dad had type one and that you guys had all this autoimmune that made you think you don't I mean, I

Diane 17:13
hear what you're saying. But I had been tested numerous numerous times as a child. And even during my pregnancies, I have two kids. And during my pregnancies, I never had any gestational diabetes. Nothing ever presented itself before then. Okay. And my mom did say I had a glucose tolerance test when I was was 12. It was an eight hour test. And I had to do I had to drink the, you know, the syrup stuff, and to drink that every hour. And then I had to do it, urine and blood test every hour. And my mom said that I had an abnormal curve, but that I was not a diabetic. And my I remember my brother had the test too. I have a brother, it's 18 months younger than and he had that test done as well. And neither one of us feedback is, you know, having anything abnormal.

Scott Benner 18:16
Does he have diabetes now or No? He doesn't know.

Diane 18:21
He does have heart conditions like my dad did. You had a heart valve replaced? In 2019? I think it was. Your

Scott Benner 18:30
father's heart stuff was not from the type one it was. It was a complication. It was

Diane 18:36
a complication of type one. He had two open heart surgeries and he had atherosclerosis. I'm sure you know, he grew up in the age of, you know, testing your urine and oily needles and I remember him sitting and sharpening his needles with the whetstone. Really, I grew up with all of that. Oh, yeah. Grew up with the smell of insulin in the morning my dad and I would share the bathroom in the morning when I was getting ready for school I would smell not I love the smell of insulin. I know some people say they don't like that smell but I it was before the insulin that we have now or she you know was equine and pork insulin.

Scott Benner 19:19
That didn't smell like band aids.

Diane 19:21
Yeah, has that smell I liked Oh, even back then. It did.

Scott Benner 19:25
I was gonna ask you. Yeah, okay. Oh, yes, yes,

Diane 19:27
yes, yes, yes. I was struggling with all the depression and anxiety. And so I reached out to my endocrinology team, and when I finally did get to see an endocrinology, it was a nurse practitioner. And she's also type one. I really liked her a lot. He's more of a manager, you know, like managing. It didn't really give me a lot of information. And I think partly part of That was that was a hindrance that I was the nurse and that she figured I already knew maybe or I was doing MDI. When I was diagnosed I was 9.3 was my HPA once the I did not have ketoacidosis because I think partly because I caught my symptoms fairly early.

Scott Benner 20:22
So we went to the movies yesterday and I wore my cozy Earth joggers, but I was missing my cozy Earth pullover because I've lost some weight and it was so big it didn't fit anymore, but luckily for me, I ordered another one and double Lucky for me, it arrived today. Let's take a look. What did I get here from cozier first of all, simple packaging but once you opened it up, beautiful bag that this comes in here. Definitely reusable and lovely. What's in Oh, this is the this is Oh, I got new. I got shorts, guys. Oh, look at this. These are gray. Beautiful, soft. Love it. Huh? Great shorts for summertime. And what else did I get? Here? It is. My pullover. It's what I needed at the movie theater. But I didn't have but you can't feel it. But I can. You want quality. You want to be just warm enough. Without being hot. Just cool enough without being cold. You want cozy Earth products, their towels, their sheets, their clothing. I'm rubbing it against my first enrollment. Okay. Cozy earth.com use the offer code juice box at checkout to save big on your entire order. And just you'll just be as happy as I am right now when you buy stuff for yourself. Oh, I'm gonna hug it again. I'm hugging. Oh, there's links in the show notes and links at juicebox podcast.com. To what is this? What is this here? I'm gonna put it in this bag. Get How nice is that? What else can I use this bag for? Cozy earth.com baby sleep bave live comfortable quality. You deserve it.

Diane 22:07
It was my vision that got really bad. My vision was so blurry, I couldn't even see we write the patient's names on our unit on a big dry erase board. And from my from my charge nurse says I could not see the patient's names on the board. And I was telling my coworkers man, my patient is so bad. And I just had my vision check. My husband and I had been fishing had been like going on for two weeks, I noticed I was having polyuria polydipsia. But I avidly exercise three days a week was you know, weight training. And I thought oh, I'm just more thirsty. You know, I just started poopoo in all the right. Yeah, and I noticed my urine was dilute. I was going to the bathroom like I don't know, every 45 minutes an hour. I was like This is crazy. And then my vision was blurry, European

Scott Benner 23:00
yourself blind. Pretty much. I feel like this is interesting for people because even you know as a having a career as a nurse, and growing up with someone who's a parent that has type one diabetes, you still were just like, well, this, you know, I mean, like just the ability to write things off is so common like for people? Oh,

Diane 23:18
for sure. Yeah.

Scott Benner 23:20
Oh, for sure. Yeah. And

Diane 23:21
especially at my age of 56. I was like, Well, I think I this is ridiculous that I would be a type one at 56. I mean, why wouldn't it have caught me sooner?

Scott Benner 23:30
Right? You felt like that was gotten past that.

Diane 23:33
I thought I'd you know, I'm like dodged the bullet. I thought, Oh, I've dodged the bullet. It's not going to happen to me. No, we my husband and I were we like to salmon fish. We'd been fishing. My husband, I couldn't even see the leaves on the trees. Everything was so blurry. And my husband's like, you need to go to the doctor. And so I went and saw my doctor and he said, Well, I don't see any diabetic damage, you know, your eyes, your prescriptions a little bit different than the last time I saw you, you know, three months ago, and I thought something's wrong. I've got to go to urgent care. And I thought, urgent care during 2020. Right? Who knows how long I'll wait. Well, lucky for me Saturday afternoon. I get there and there's only two people in the waiting area. When the nurse calls me back. I said, Can you check my blood sugar? Absolutely. And he checks my blood sugar and his meter says high and I said How high does your meter go to? He says 600 And I was like, Oh great. I guess I bought my tests off a golden ticket to the ER and he said as a matter of fact you have and he brings out this golden piece of paper and writes all my vital signs on it. I was like This is crazy. And I come home and I get out of the car and I just start bawling my head off in the driveway and my husband's putting the boat away. And I said, I have to go to the emergency room. And he's like, Okay, I packed a bag and went to the emergency room.

Scott Benner 25:06
Did you ever get COVID? By the way?

Diane 25:09
No, I never had COVID

Scott Benner 25:11
Even I was just going to go into the hospital in the middle of it. I was just wondering if it found you that way.

Diane 25:16
Yeah. And I was concerned about getting COVID at work. Of course, we were doing all the PPE and all that jazz. But I worked on a unit. I didn't work in critical care, I work on a neurovascular unit. I was concerned about getting COVID to so but I'm, I always wash my hands and wear a mask. And we were quarantine and then a whole bit, you know, after I got diagnosed with the type one diabetes, and I was having all problems with the depression and anxiety. And I tried to get a counselor and it didn't work out. And so then I reached out to my endos office, and I said, Is there a counselor that works with your patients? You know, could you refer me to a name or something? They gave me a name of this psychologist. His name's Michael Phillip. And he is amazing. He's also type one diabetic II was latent onset diabetic. He was in his 30s. I started just seeing him and I would sit down and chat with him. We would just chat like professionals it was I really enjoyed seeing him. It wasn't like counseling so much. It was just, I didn't have any other type ones around me. And I was listening to podcast. And, you know, trying to educate myself. I saw him a few times. And then that's when I got diagnosed with the beetle deficiency. And then I had more problems, trying to get my team to listen to me. Because once I started until I got the big 12 shots, and I educated myself about Pernicious anemia, and learned that I would need the 12 shots for the rest of my life. My primary doctor was not on board with that. She said, Well, your numbers are normal. And I said, but I have a mallet Norte malabsorption problem, right? I will need this the rest of my life. And nobody was listening to me. It was crazy. And I got this wonderful book written by an ER nurse and her er husband, who's the doctor. And it's about the child's deficiency and their trials and tribulations. She was the 12 deficient as well. And they started seeing patients in their ers with symptoms, you know, older people, you know, little old lady was gonna come in confused or falling. And they're in there saying, Oh, they just have dementia. They're getting old. And nobody was nobody was testing them for B 12. And it was, it was an amazing book. It was an eye opener for me. I felt bad for my poor husband, because we went on a fishing trip. mid June while I was dealing with all of this educating myself reading this book, trying to get my team to listen to me. I would read Stephen the book and when we were fishing in the boat, and then I would start crying and then I was yelling. They're going Yes, yes, I hear you

Scott Benner 28:28
saying you know he loves you because you didn't, you know, fall in the water by mistake.

Diane 28:35
He loves me so much. And he totally has been so supportive through all of this. It's amazing. And he's listened to the podcast a few times, too. That's excellent. So once I got diagnosed with Pernicious anemia, and I had all this movement disorder, gait problems, balance problems. I had all these fancy tests or my vision, my nystagmus like, I couldn't see in the dark. I finally had to plead with my neurologist to get to prescribe me the big 12. He said, Well, your primary doctor should be taking this over and I said she's not listening to me. She says that my levels are normal and I need this for the rest of my life. So he prescribed a one one month one time dose. I thought Well, thank God somebody's listening to me. In the meantime, I I adopted a dog and I was going to see my psychologist and he was helping me and he was I was telling him about the podcast and how much I enjoyed it. He started listening to a two. He does a lot of not a lot of research but he helps us helps in some diabetic research. He does stuff with Dexcom also, and I was doing MDI, in 2021, I got diagnosed with Pernicious anemia. And then in 2022, I had lab worked and I was they put me on a statin right away the endocrinology office, but be honest that and because the being a diabetic, you know, they worry about your cholesterol, even though my my numbers were okay, they still put me on a low dose of Lipitor for cholesterol. Yes, my cholesterol. I saw my nurse practitioner for you know, routine, endo office is there and she did some lab work. And she noticed that my liver enzymes were just slightly elevated. So the next appointment I had with her she brought it up that she said I saw I see that your your liver values were slightly elevated. I'm gonna have your or she I don't think she actually said it to me. But she might have sent it in an email or something saying that she went my primary doctor know about it. Well, nobody ever follow it up. And then when I saw her in June of 2022, might have been like September, and oh my gosh, I was so sick. I was so fatigue. I almost passed out in the shower, and my husband had just left for work. And I thought, man, I've got to make it to this endo appointment. And so I got to my appointment. And when my nurse practitioner came in, she goes, how are you? And I said, I am horrible. I feel horrible. I still fatigue. I almost passed out in the shower today. And she said, Oh, that's That's unfortunate. You know, he was concerned. She was concerned. He sent me to the lab, managed to make it home and I hadn't had much of an appetite and it started having some nausea, intermittent nausea like that, that week. And so then I came home and I was hungry. And I stopped and got some tacos from Taco Bell. At one taco and then I lay down on the couch and was taking a nap. And then my phone rang. And it was my endocrinologist office and they said, your liver enzymes are elevated, and you need to go to the emergency room. And I was like, oh, that's, that's not good. I packed a bag. And my husband, unfortunately, was home. So he took me to a hospital. And of course, they were still doing the whole nasty thing at work. They redo my labs because they couldn't see their labs. And my liver enzymes were through the roof. Like I was a raging alcoholic. And of course, the first thing they asked me was, Do you drink alcohol? I said absolutely not. You know, I don't drink any alcohol. And so they admitted me. They tried to give me some medicine to call me a chemist. It's an IV medication that binds the, like toxins in your blood, it helps your liver help your liver recover. Oh, that just made me horribly sick. And the hospital is. I told them I don't want to take I don't want to take any more of that. And it was just because I asked him if we if I could use if I could take that. He said sure we can try that. And you know, being a nurse I you know, I know some things, you know, I know quite a bit of things. They did an autoimmune test on me for autoimmune hepatitis, I saw a GI doctor while I was there. And of course, it was a standout test. So I spent two nights in the hospital on my unit with nurses that I know that I work with took care of me, which was I asked I asked for that actually, I thought I'd never asked for that. But I wanted to be where people I knew and that I loved and that I knew love me. I spent two nights there and I started feeling you know a little better because they'd give me some IV fluids too. It took quite a while for that test to come back. But about a week after I was in the hospital. My test came back autoimmune hepatitis A week. It took a week for the lab to come back. Yeah, yeah.

Scott Benner 34:20
When you get those B 12 shots, how long does it take for those symptoms to start dissipating?

Diane 34:26
Well, everybody's different, but pretty probably about a sprint. So initially, when you are diagnosed with the 12 deficiency, they give you four weekly shots. And then after those four weekly shots, they may they may retest you, they may not retest you. You have to be off the 12 any kind of Eatwell supplementation for four months before you can get a through the 12 level reading because it doors in your liver. And so your body holds on to it for quite a while.

Scott Benner 35:05
But for you, you started the injections. And when did you notice? Like the symptoms going away? How long after

Diane 35:13
got the second injection? I started feeling better. That fast. Yep. Yeah, you fill up pretty quickly and it be 12 is very cheap, very inexpensive. The only type of B 12. Injection injectable in the United States three prescription is a synthetic b 12, which is no Kabbalah mean. And I was doing the sino injections. And then I had to be 12 or the I have the autoimmune hepatitis. And I had been educating myself about B 12 injections and the types that you could get. I was getting some methyl cobalamin from a pharmacy in Florida. And I had just started injecting myself with that with the methyl cobalamin, which is more like what's your body actually uses for synthesizes? Right? I don't feel that the synthetic was working well for me interesting. Can

Scott Benner 36:24
I ask a question about the autoimmune hepatitis? Like what's the treatment for that?

Diane 36:28
So they put me on high doses of steroids, which was oh, so

Scott Benner 36:34
horrible on your blood sugar, right?

Diane 36:37
Oh, my gosh, my blood sugar was crazy. Oh, and in the meantime, when I was seeing my psychologist, he kept asking me who's your endocrinologist, I said, I have not seen an endocrinologist. And I've said, all I've been seen is the nurse practitioner. And he said, Well, you should be seeing a doctor at least once. And so he sent a referral to my Windows Office. Or, you know, saying, you know, please, please proceed by an actual MD. I never heard anything from the office ever. And then after when I came in with the so then when I got came in with the high liver enzymes, my endocrinologist who are now seeing II saw my lab values and decided to take on my case, because of that. Not because that I was a type one diabetic, but because my liver enzymes were elevated. That's when he decided to take me on

Scott Benner 37:38
notice of that. So so it's so crazy. Yeah, so the steroids, they hit you with them. It's not over then Right? Is there maintenance that has to be done?

Diane 37:46
Yes. So I was on the large doses of steroids for like two months. Then I went on a taper and then they put me on a medication called is this refrain. I take that daily. And then I have to have lab values drawn every three months to make sure that it's working and doing his job and not not creating other problems, because there's a lot of serious side effects with this medication too. And

Scott Benner 38:17
this is a thing you only knew about because of lab values. You weren't having an issue that you were concerned

Diane 38:23
with. I was having fatigue, and I did have some jaundice going on. But it was very mild. You can really tell unless you really look close. But no, I had no like enlarge. My liver wasn't enlarged. I had no pain. I just had some mild nausea. I did notice my stool coloring did change. But mostly it was just the fatigue. I was so fatigued,

Scott Benner 38:48
no amount of sleep made you feel rested. No, but

Diane 38:51
I am a night shift worker too. So that, you know, all kinds of You always cause all kinds of problems. And it's funny because like a few months after I was diagnosed with autoimmune hepatitis, I listened to an episode of a young man who was type one diabetic in South America. Yeah, also. Yeah, had also been he was on your show, right? And he had also been diagnosed with autoimmune hepatitis, but he could not take maintenance medications and has to stay on steroids. And he talked about how difficult it was for his insulin, you know, and all that stuff. Oh, yeah. And they put me on this like, I don't even remember the name of the insulin. They put me on some high concentration of insulin. And then when I did the taper, I actually had to taper myself. Nobody followed up with me from the Windows Office, like, Okay, you're on these high doses of insulin. So when they start tapering you off the steroids then you know we'll need to start tapering off the insulin I was the one add to taper myself

Scott Benner 39:56
off the insulin you at least knew to do it though.

Diane 39:59
Oh yeah, I knew that I had to do that. Because if I didn't my gosh, my blood sugar's within. Yeah, ridiculous. I would have been in the toilet. You know, so low, it would have been ridiculous. But it really frustrated me that nobody on my team was following up with me at all.

Scott Benner 40:19
Damn, my daughter is in the ER this past week, twice. And she checked into the ER twice two different days was pretty much like, kept there for 12 hours at a shot. And in two separate visits 12 hours at a time. I'm gonna let you guess how many times somebody asked her about her blood sugar or tested her blood sugar? Probably one. Never. They never brought it up. Oh, that's crazy. That horrible 19 by herself in a hospital room with roommates. She comes in I have type one diabetes, blah, blah. Here's what I'm here for. And no one ever mentioned it to her ever once ever again. That was it as if she wasn't passing out. It wasn't worth talking

Diane 41:05
to up to her about right because that's not why she was there.

Scott Benner 41:10
It's yeah, absolutely. Like, just I was like really floored by that. Honestly. No follow up. No concern. Nothing

Diane 41:18
is crazy. It's so crazy hospitals. They don't we're so our staffing is crazy. I can't even tell you on my unit. We have so many travelers. We have hired a quite a lot of new nurses. But they don't you know, they don't know a lot of things too. It's just crazy. The ers. You know, it's just unbelievable. The ers. I always tell people if you don't have to go to the emergency room, go to urgent care. Just go to urgent care first. I've sent my employees I've sent my co workers down to the ER, I have just one gal, her blood sugar. She came to me one night and she said my blood sugar's over 300 and I can't get it to come down and I was just feeling horrible. And I said, okay, just go to the emergency room. This was like three o'clock in the morning. She called back up to the unit at like 715 She says I'm still down in the ER waiting to be seen. And I said just go to urgent care. I just told her go to urgent care. They can give you some IV insulin. And then you know, then you can go from there. Off with your doctor or whatever. Yeah.

Scott Benner 42:23
There were things that only took a few minutes, but they wouldn't get back to her for two hours. Yeah. And yeah, I was on the phone with people. I was her roommate. I said you have to go stand in the hallway and stare people in the face till they come help you. Yeah, and you know, walk over to the doctor ask this question. Don't wait for them to come back. Yeah, Arden said it wasn't just her. She said the second day she was there. A woman came in who had had her gallbladder removed already. And she was having some sort of an attack where I don't know she ate something or whatever their body couldn't deal with. And she was just vomiting, like uncontrollably. And my daughter said she vomited for two and a half hours before somebody gave her nausea medication. And she just sat in there yelling, I need help. I need this medication and people would go we'll be right back. We'll be right back. We'll be right back. But the funny thing was, is that I finally had to get on an airplane to go make sure she was okay. And I was in the ER, they weren't busy. It wasn't because they were overwhelmed. I would probably need a month and a lot of clipboards, to sit there and really figure out what was going on. But bare bones didn't quite know what they were talking about. No sense of urgency, no desire to really be helpful, just checking boxes, and then kicking you like that's what they wanted. Like when I arrived. The floor manager was aggressively trying to kick Arden out of the hospital without answering any of her concerns. And I said you haven't tested for this one thing yet? And he said yes. By the way. I think we've gone through a number of things. Arden had lower abdomen pain, and it got worse turned into stabbing. The stabbing went up into her sternum. We thought appendix right. And you know, she had pretty much every appendix sign, senator to the hospital. They do a CAT scan. They tell her it's not your appendix. Now listen to this though. They tell her it's not her appendix but you have cysts all over your ovary. We have to do an ultrasound right now to make sure they're not torsion or twisted and Arden's like, okay, you don't like I don't like okay like that or morphine. At that point. She was just agreeing to whatever was going on, and they take her to the ultrasound. Two hours later, someone walks in the room, the same person that told her I saw your CAT scan and you have cysts all over your ovary came back in the room and she goes there are no cysts on your ovaries. What but then did not explain that any farther. And she goes she goes I wait You came in here a few hours ago and said they were. And he goes, Yeah, what CAT scans aren't the right way to diagnose that? And she goes, what? And he goes, it's not that we're going to discharge you. She goes, I'm still in pain. And he said, Well, yeah, you have to follow up with your OB, and then didn't tell her anything else. She's 19. She's with roommates from college. They, they're roommates. But they're not like lifelong friends or anything like that, you know, and they're good people and all but they don't do the hell they're doing. And at one point, Arden said to me, I realized, these the two roommates I was with, they'd never even been in the hospital before. They weren't people who grew up with any kind of medical issues. They don't go to the doctor, they've never been to a hospital, they were scared out of their goddamn mind. And she's aren't like I'm high on morphine. And like trying to make sense of what's going on. No one's checking on her. Like if I couldn't monitor her blood sugar, I was basically keeping her blood sugar stable from New Jersey. When I sent her to the hospital, I started putting her I put her algorithm into a higher target, so that she would ride a little higher in the hospital because I knew she was going to get there. They were going to hit her with pain meds, and then nobody was going to help her. So I kind of was the head of the whole situation. But anyway, they sent her home. And you know, not surprisingly, she woke up the next day not doing any better. And she struggled through the day. At around midnight, she calls me and says, I think this is getting worse. And she starts describing that the stabbing pain has gone from the she still has the cramping lower stabbing lower stabbing sternum. Now the stabbings in her left chest going through to her shoulder. And so I'm looking at everything and I'm like, This feels like gallbladder maybe, like you don't mean like so I can see how it could get misconstrued early on blah, blah, blah, Now the pain is moving up into her chest that could be gone. i Okay, so I send her off to the hospital again, in the middle of the night, like three in the morning, and I get right on an airplane, like I'm on a plane by 7am. And by the time I get there, I'm literally walking into this guy telling her, you gotta leave your word we've discharged, you get out. And there's nothing wrong with you that we can find. She's sitting there and she's in all this pain. She's like, I started looking at my chart, they start talking about like, it's like a logical Arden's like, I'm not crazy, like I'm in pain, you know. And so I come in and I say, listen, hey, everybody calmed down, like Hi. Like, I'm here, like, I have now been awake. By the way, I've now been awake for 27 hours as I walk into that hospital, because I wasn't planning on going somewhere in the middle of the night. And so I go walk in, I orient myself with what's going on. I said, What tests have you done? And he goes through everything. And I said, your shorts, not our gallbladder. I'm like, it's a pretty classic presentation at this point for gall bladder. And he said, Yeah, it's not I said, How do you know? And he goes, Why don't I said, What did you test? Because I asked him when I got there, have you been imaged? And he said, she said, No. And he goes, we tested her bilirubin. And I was like, that's not a way to rule out gall stones. And by the way, diet, he says to me, how do you know? And I said, Well, I have a podcast and the internet. Why don't you know? So he's like, Well, that's that's not a classic presentation. I said, No, it's a word for word presentation. It doesn't mean it's going to be that, but you need to alter it, by the minimum give her an ultrasound, right. And now at this point, not only am I aware of this, I've educated myself on it on the airplane. But I'm in contact with an endocrinologist who listens to the podcast, who I'm bouncing things off of Thank you very much if you're listening, and she's telling me the same thing, like backing up what I'm thinking. So I said, Listen, she's here, give her the ultrasound. If it's not that, then God bless them. We'll go, he says, he tried to scare us into leaving. He said, she's already been discharged. If you want her to have an ultrasound, you have to walk back out of this, er, walk back in, check back in, go through the intake again, and then make your complaint and we'll see if we went to ultrasound. Oh, my God. Yeah. I giggled and I said, Well, that's not what's going to happen. I'd like to speak with the physician on on call right now. If he goes, he won't talk to you. And I said, Yes, he will. Go tell the physician what I said. And he goes, this is not gallbladder. I said, may not be, but we've gone through everything else. This is the next reasonable step. You haven't tested her for it. We have we tested her bilirubin. I said that is not a test for that. You should know that. If you don't know that. You might want to go Google it, or look it up or go back to school or whatever. And now we staring through me. And I said, Let's be real clear. If you put her back out on the street and she has a real medical emergency. I'm going to sue you. And he goes, hold on. And then he leaves and he goes and talks to the doctor. And he's like glaring back in to the room. So I I stepped out into the hall and I glared at him while he was talking to the doctor. And so I just stared him in the face the entire time he was doing it. He comes over and says, this last day to me, he goes, even No, there's no presentation for gallbladder, the doctors gonna do the test for you to make you happen. I said, and you know what I did? You'd be very proud of me very well, I was proud of myself. I'm happy to share it here with everybody else. I de escalated. I thanked him, I put my hand on his shoulder. I said, I really appreciate this. I'm just worried about her. And I just want her to have like, you know, as much coverage as possible. She's here by herself. I can't stay here in the state for long. I need to make sure she's okay. But like I started thinking he was full of, by the way. Yes. Oh, yeah. And he came back in with his head when he didn't want to have his hat in his hand. So he came back and re attacked me. You know, you're wrong, but we're still going to help you because, by the way, dying because that because hospitals are always run tests that they think aren't necessary. Right? Like, like, that happens constantly. I just shut the whole thing down. I thanked him. I treated him like he was Jesus Christ Himself. Thank you so much for your wonderful blah, blah, blah. He left the room. I looked at my daughter and went, what a hassle. And like so. And she goes, she goes, You were so nice. This time. I said, Well, we got what we needed. Yeah, that's right. Yeah, I'm not looking

Diane 51:25
to get what you need. Yep. Exactly. Why Kevin with kindness. Yeah, because you kill you. I'm

Scott Benner 51:31
not here to like fight. I don't fighting with him. By the way. Me being right or him being rights meaningless. I don't care. Right. So a few minutes later, finally, the doctor comes in. My daughter goes first time I'm seeing this guy been here, nine hours at this point. And he comes in nicest can be he goes, Listen, I agree with what you're saying. gallbladder is the last thing we should definitely image it blah, blah. Did I get the nurse in trouble that I complained. I didn't do anything. I said thank you very much. I really appreciate this. That's all I've just thank you so much. They run out and give her the the ultrasound she comes back. And that's it. Now it's okay. It's all good. You're gonna have to go to an OB maybe and like so now we're down to like, I mean, we don't even know honestly, like, we've eliminated so many things. Like endometriosis. Like is like one of the last things I can think of, you know, so she's gonna go see an OB when she gets home. But that hospital stay was I don't even know another way to put it. It was horrible. Yeah. And if she would have been by herself, they would have hit her with morphine kicked her out. When she came back, they would have hit her with morphine and kicked her out again, they weren't really trying to help her. And then they would say things to her, like, make a follow up appointment with with an OB and she goes, I'm at college, I don't live here. And they'd say, Well, you should call your doctor. So no direction no like, vibe, even you don't even not even like, hey, look, maybe it's this or try to check in this direction. Just like we you came here and asked us the question. The question has been answered. And the answer is we don't know. But you're not about to die. So get out. So terrible. Yeah, yeah, that's America. Majan. somewhere else.

Diane 53:12
I will have to say I'm I. I'm glad I'm a nurse. I'm glad I'm a nurse. And I'm glad I'm a nurse at the hospital I went to because I probably I probably wouldn't have gotten. I mean, even though I had problems with my care team listening to me, I probably still wouldn't have gotten the care that I get. No, of course not. And I think it was only right. Yeah. I say that all the time. You're

Scott Benner 53:38
dying. This is the world now you need to know what's wrong with you. And they're just the ones standing between you and the legal need for a prescription or a test or something like that. And I'm not saying it's everybody, I'm sure there's other places I could have sent my daughter in that situation, they would have handled her very well, but didn't happen this time. And we didn't start off poorly. Like she just went in there like, you know very kindly I'm in pain. This is what's going on. Can you help me? You know, and, you know, they they agreed they were like it sounds like your appendix and then they came back and like it's not your appendix. It's your ovary. It's not your ovary. It's we don't know. Well, leave now. Thanks. Why I'm still in pain, the stabbing pain still here. Like and so. Yeah, it's fascinating. I mean, I don't know what people who aren't me. Like, listen, Arden's really like a She's a tough person. And but she's still 19 and they had her they hit her. They hit her twice with morphine in 48 hours. She'd been in pain for a couple of days. I got to that hospital. There were tears collected in her clavicle. She was crying so much. And then while she's standing there crying, and her roommate is distraught, because this poor girl has never even seen a hospital before. This grown man. By the way, his name was Russell and if anyone ever tells him About this, please let them know I said he's a prick. He's standing in front of them, like aggressively kicking them out of the hospital. Like he's being aggressive with these girls. And like, unnecessarily. And he just, he's pushing them and using harsh language with them and being Curt with them and not answering their questions and denying anything. So what Arden finally did was Arden. Arden said, even through the tears, she said, I'm not leaving here. I demand you admit me. Good for her. And so like that frozen because he couldn't like I think he couldn't straight or when she asked, and so like it frozen. And then she said, my dad's on his way, he just got off of a plane. I'm not moving until I speak to him. And if you don't like it, you have to admit me, I'm not leaving. And that's the only thing that stopped it. Yeah. So he was literally like aggressively badgering to 19 year old crying girls, one of them had been in pain for three days, and was half loaded on morphine. And he was just trying to get them to walk out of the place he didn't give.

Diane 56:04
So yeah, that's Yeah, unfortunately, my husband has met some of that too, because he's not, you know, he's not medically savvy. He doesn't know how to advocate for himself very well. And he's met some doctors that were like that. And so now it's, it's a struggle to get him to even just go get a routine checkup? Because he didn't, he doesn't think that they're gonna listen to him or they're going to, it's just frustrating. Yeah, it's frustrating. And that's one thing about, I was always empathetic to the patients, but I'm even more. So now that I've had to go through all of this. Yeah. It's crazy. It's just crazy.

Scott Benner 56:44
Everybody's not good at their job, I understand that. And some people just do things for a paycheck, or maybe they're just tired or whatever. I mean, any number of things could be happening. But there are very few jobs where that can't matter. Like you have to still follow through. And, you know, just once I got there, and you know, I got to the doctor, now he was the nurse guy, he's gone. Now he will I don't see him again. And now it's a different nurse. And she's just like, you know, pleasant, but literally no help. And in no hurry to speak of, like, you know, finally walked in and said, you know, we're just charging you now. And I, so I got them to what I ended up saying was, look, we have no answers whatsoever. None. And I said, Is it possible she has an infection somewhere we can't see. And they said, Yes, that's possible. I said, Okay, once you hit her with one course of an IV, IV antibiotic, just and then let her leave with something like a pill for a few days, like just just in case, not going to hurt her. And maybe maybe we'll catch something by mistake. And the doctor goes, Sure, no problem. Like it just does it. And so I'm like she you have opinions, and then you don't have opinions. And then I say something and you say no, but then I say something you go sure whatever. There's no consistency to it. First of all, if the IV antibiotics were a good idea, why didn't you think of it? And you know, and and if they're a bad idea, why did you do it? If the whole thing is just confusing? And there's no answer, except no one knows what they're doing. And if they do, they don't care enough to make sure they're doing it? Well, because my point was with all that is she comes in at the checkout, and she says here, you know, all of your prescriptions are waiting for you at this pharmacy. It's up the street and I said, I we don't have a car. And she goes what I said, I just flew here from New Jersey. I do not have a car. She doesn't have a car, her roommates, broader and left when I got here, we have to Uber back to her apartment, can you please send these to a pharmacy near where she lives? And she looked at me, like I asked her to wreck the Chrysler Building by hand. And I said, I just need you to resend the scripts to a different pharmacy. And she stared at me like, are you? Are you kidding me? You're asking me to do this. Just go and then she says it's only up the street. And I said, I don't have a car.

Diane 59:11
And she goes, Ah,

Scott Benner 59:14
and I said, Could I just have them in paper, please? And she goes, you just want them in paper? And I said, Yeah, can you just print them and hand me the prescriptions? Because by the way they were they were scribing a bunch of stuff where she didn't need Maalox, like all kinds of like for different like just throw stuff at the wall for stolen account. It was so clear. It wasn't her god damn stomach and like and they still tried to give her for other things. And I said just print me the scrubs. I'll go take care of it myself. And she goes, okay. 30 minutes later, I had to go hunt her down. I said, Can I get those scripts so we can leave, please? Oh, yeah, hold on. And then she went and got them. They were they were kicking her out five seconds before they couldn't we can't give up the space. She's got to go blah blah blah. Okay, put He describes him he describes 30 minutes later, she hadn't printed the scripts. You know what she was doing? I was watching her. She was stuffing food in her face on the internet, telling a friend next to her about her weekend. That's what she was doing. I was listening, and I was watching. So, and then she comes back. We're so busy. I'm sorry. We're so busy. I can see you playing Pong. I see you. I see you. I see you looking around to make sure that nobody sees you stuffing food in your mouth. Like, like, I'm watching you. And it just, it was mad. It was absolutely maddening. And I have to be honest, Arden is going to be fine. Like, we're going to figure out what this says she's gonna be okay. But thank God, she had this experience at a young enough age where she could like, like, process it and understand what her what her needs are for herself in this, but an old enough age where she can go like, this isn't going to get better. Like this is the norm if I ever end up in this situation again. Because like, I don't think she I don't even think she would have believed me if I told her you really have to take care of yourself. No one's going to help you. I mean, how in the hell are you supposed to believe that no one's going to help you in a hospital. It's It's fascinating. You know, anyway, it's,

Diane 1:01:10
it's crazy. Yeah. It's crazy. Ridiculous. And I worked at you,

Scott Benner 1:01:15
you know,

Diane 1:01:16
thank God. I don't work in the emergency room. But

Scott Benner 1:01:18
I've heard you talk around it three times already. Diane, I already I hear you trying not to be unkind. But you're like, don't go to the emergency room if you don't.

Diane 1:01:27
Right. I know. I tell people all the time. You're

Scott Benner 1:01:31
on the inside. And you're telling me Don't do it. So I don't know. The whole thing's crazy. Anyway, I'm sorry. Is there? Is there anything we didn't talk about that we should have? Did we leave anything out or anything you want to say that you didn't? I

Diane 1:01:43
will be happy to say that I work with two other type one diabetics on the night shift. When was diagnosed one month after I was and the other was diagnosed at the age of 19. He's now 3030 I think, okay. So I wouldn't the three of us are on together. I call us teen tandem. Because I eventually, once I finally did see an endocrinologist, he asked me about a pump. He was like, How come you're not on a pump? And I went through this feel about how I was used to vials and syringes. And that's what my dad did. And he's like, Well, you have good control. My agencies have been anywhere from 5.8 to six point. You Oh, good for you. I was diagnosed. Yes. And I owe a lot of it to Juicebox Podcast and to be involved with insulin. So eventually I got on a pump. I've been on a pump almost two years now. And I absolutely love it. And I at my last appointment when the g7 was going to be coming out. He said Well, once it starts talking with the T slim, you know, once they get that approved, and you will get the T the G seven. I'm looking forward to that. Yeah. One time here a couple of weeks ago, we had three type one patients. We've had several that are on there using their pumps. So when you come to the hospital and you get admitted, we have a contract that the patient can sign so that they can use their own CGM and use their own insulin pump. That's a great idea. And yeah, it's awesome. In fact, we had this one gal who was admitted for gastroparesis and was on her insulin pump and I was about three in the morning and nurse came out to the desk and she said my gals blood sugars like 300 And I was like, Oh, she needs to be doing corrected Bolus is she doing correct Bolus is a lot of my co workers, they educate I've educated them to I've shown them my stuff. And they, you know, I've educated a lot of people. And she's like, well, she says she's doing corrected boluses. So then I went in and talked to her. And she's like, Yeah, I've been doing corrective bonuses, and they had her on TPN because she wasn't able to eat. And because we're gastroparesis, and I told her you should reach out to your endocrinology team. And they can come up with a, you know, a profile for while you're on the TPN. You know, higher you know, they can change your profile. Yeah. And then the next day that that was in the middle of the night, and her mom was staying with her. She was young. And the next day she her and her mom are out walking in the hall. And she stopped and was talking to me and the mom was like, Yeah, we're gonna call the endo team tomorrow and talk to them about, you know. Oh, yeah, it's just so cool. Yeah, this is all Send it just, it just whenever I hear that somebody's using their pump, I always like to go in and say hi, my name is Dan. I'm also a type one and that's wonderful.

Scott Benner 1:05:11
Yeah, that's fantastic. I it's, it's a lovely just to open up and tell people and to share what you know with other people, so maybe they can help somebody else. That's really wonderful. Really, ya know, and needed. i

Diane 1:05:22
And I'm always looking on Amazon for ways to wear my pump without some iClip you know, with the T slim broke right away. And so then I got this other like a holster and it was huge and bulky. And whenever I wanted to adjust something, and it was hard getting off my clothes, so I found some pocket underwear on Amazon. It has two pockets in the front, and I wear my pump in my pocket. And I show all my co workers, my co workers my pockets. I just

Scott Benner 1:05:53
underwear with pockets in it. That's amazing. Yeah.

Diane 1:05:55
In fact, it was one day my husband and I were out to eat. And I heard I heard, I heard the pump go off. And I thought I thought it was my I heard this pump and I thought Oh my I'm going low. And I looked at my pump. And I was like, you know, it's not me. It was one of the waiters. And I said, Oh, my and my husband heard it too. And I said, Oh, it's tacky. I see your tubing. So when she walked by my husband said, Hey, your tubing is hanging out. And she's like, Oh, yeah. And I said, Yeah, I heard your alarm go off. I thought it was me. And she said, she said, Yeah, I'm gonna go over and get some juice, go get some juice. And then I was telling her about my pocket underwear. And another time I saw a gal It was summertime and this gal came in to the grocery store and was walking towards me and I saw her pump hanging on her. She had a little sundress with a little spaghetti strap. And I saw her pump and I said I like where you're where you're pump. I said, I'm also type one. Let me show you something. And I showed her the top of my underwear at the pockets and she goes, Oh my God, where did you get those? And I was like, I get I got him from Amazon. And she goes, Oh, I'm gonna have to check those out. I said they're, they're not that expensive. They're fairly inexpensive and I absolutely love them.

Scott Benner 1:07:17
Diane, you just named the episode pocket underwear. Congratulations.

Diane 1:07:20
Pocket underwear. That's right dance. Great. I love my pocket underwear. It's amazing. And I I'm always talking to my co workers about, you know, convenience and how you know how to wear it. We're always talking about where we put our CGM. I'll see sometimes I don't put mine on my arm very often. I don't really like people seeing it because there's always people saying, oh, oh, good for you. You're quitting smoking or you know. No, no.

Scott Benner 1:07:53
It's fine, Alex, thank you.

Diane 1:07:57
I started yelling at the farmers market and she had her CGM on our arm I think brave I whispered tourists and you share our brain wearing CGM on your arm. And she's like, Oh, yeah. She said that she had gestational diabetes and they prescribed it to her while she while she was pregnant. And I thought that is so amazing that they're doing that and my neighbor across the street, he's going through throat cancer. And they gave him a libre. My his wife messaged me one day I was out and about and she was like, hey, they just prescribed the libre. Are there any suggestions and I, I bought this, I buy this spray on adhesive. Skin adhesive, you know, it's like a skin prep. I said, Oh, I've got some bottles with that. I'll bring one over and we went over I went over and we talked about it and and just because they got him on here, he's type two diabetic and they got him on high doses of steroids while he's getting chemo and radiation. So yeah, it's just I'm always educating people about all the time. I think it's so important to talk about it. I wished I sometimes I'm sad because I wish that I could share this with my dad. Oh, yeah. Yeah. I'm sorry I missed him so much. I never realized sorry. never realize how much how much you went through. You know, how many cards and trying to keep his blood sugar's you know, straight. I remember one time he my mom had gone to the grocery store. I was about four years old. And my dad's blood sugar had been i and he's given himself several doses of insulin and they finally caught up with him and he went lay down to take a nap and my mom needed to talk to him and she Call the house. And, of course, you know, in the early 70s, late 60s, late 60s I Yes. And she was like, I need to talk to Dad, can you get him on the phone and I went into the bedroom and his eyes were wide open, but I could not wake him up. So I came back to the phone. I said, Oh, you know, he's awake, but he won't get up, he won't wake up. His eyes are open. And so my mom knew something was wrong. And she came home and he was, he was extremely low, low blood sugar. And I remember my grandparents coming to show us their new car, and we wrapped my dad in a bike and they got him out to the car and he took them to the hospital. I was just crazy. And, you know,

Scott Benner 1:10:47
I didn't think you're gonna make me cry. The end. Thanks.

Diane 1:10:51
Yeah, it just sucks. You know, you just you wish that you could share the technology. And yeah,

Scott Benner 1:10:59
no, I know, people who have that available to them now or are fortunate in ways they don't even understand. They may not even understand, you know?

Diane 1:11:08
Oh, yeah. I mean, I remember all of that stuff. My dad, I remember my dad was part of some kind of. He was some kind of guinea pig for a Good Samaritan Hospital in Portland. I remember going to Portland, my brother and I, and my mom. We stayed in like a boarding house while my dad was in the hospital. And he was they were doing some kind of I don't know, it's not experiments, but some kind of trial thing. And my dad was involved in that. Yeah. But dad managed to keep all his fingers and toes. His kidneys were you know, he was he had kidney, you know, chronic kidney disease from just all the years of high blood sugar's, but he wasn't in dialysis, but it was getting to that point. And his heart had been quite affected. He'd had his first open heart when he was 35. Oh, wow. And then about 17 years later, he had a second open heart surgery. And he had significant arrhythmia. And that's ultimately what killed him is his heart. You know, he had a regular heartbeat. He didn't have afib. You know, he just had all the other stuff. Well, yeah, I

Scott Benner 1:12:22
mean, it's, yeah, that's a long time ago. And if you weren't lucky enough to maybe even just, again, lucky enough to have a doctor who set your insulin about correctly for your activity and your food, you would just go along with high blood sugars and not know what are we bouncing all over the place and not know it? Know?

Diane 1:12:41
For sure. Yeah. Oh, yeah. It's interesting. Yeah. And my grandma, you know, my grandma was always very protective of him. They had a very close relationship. It was sometimes difficult. It was difficult for my my mom, my parents marriage, they got divorced when I was 21. And my dad, you know, he did manage himself that he really relied a lot on my grandma, you know, to help him too. And he, he tried to get my mom to, you know, have her take over his care? And she was like, No, you're an adult, you need to take care of yourself. Which is true. Yeah. But, you know, he had had all those years of being taken care of as a child. And, you know, he was in track. And he was very active. And then that, of course, as soon as he was diagnosed, and he wasn't allowed to do any of those kinds of things anymore, which was really, really hard for him. Yeah.

Scott Benner 1:13:41
I said that time of the time in the world, but he just you can't be active anyway. It's long enough ago, I've talked to people who one woman was told by a doctor to drop out of college because men wouldn't want to marry her. So she might as well just go would enjoy her life before it killed her. Like, that's a thing that God says. It's a thing that God said to somebody. So, so crazy.

Diane 1:14:03
I know. There's, there's so many that's one of the cool thing about the internet and multimedia, it's, you can listen to podcasts, there's groups that you can join. One of my co workers, that's the type one she or she started a like a support group where they get together and they have cocktails and these fun stuff like that. You can join you know, in your community and I belong to a couple of different groups on Facebook. I read a lot of people's stories, you know, that have been diabetics for as long as my dad was, it had been a diabetic, you know, and you know, it was long and I can relate to their stories because I remember my dad wheeling syringes on the stove and forgetting that they're on the stove and they have in Gloucester wrenches explode all over the kitchen. And I

Scott Benner 1:14:54
mean, the thing that grabbed me is sharpening his own needles on the whetstone.

Diane 1:14:59
Oh yeah, yeah, I remember I remember my dad had a nice good size. It was like a three by six inch Whetstone, and he would sit and sharpen his needles. And I was didn't watch him. Watch him sharpen his needles. And I remember, you know, when I was when I first saw him doing it, I was like, What are you doing? What are you doing that for? And he goes, Well, they get doll after I've used them a few times they get those, so I have to sharpen them so that they that I can get my shots without hurting me. It's like,

Scott Benner 1:15:31
now your stuff comes in the mail.

Diane 1:15:35
Yeah, totally. I just get on the phone, call him up

Scott Benner 1:15:38
and open your front door and they're sitting there. It's so cool. It is pretty great. Actually crazy. Dying. I'm a little out of time. So I have to say goodbye. But I really do appreciate this very much. And you coming on and sharing your story and, and letting me rant and rave about the hospital and everything else. So I appreciate your course.

Diane 1:15:57
That's that's the one beauty of of your podcasts that I love is that you. You you share as well. And I love I love it when you share I I just I'm always telling everybody about your podcast and thank you. Yeah, and when my psychologist when I was seeing him, and I was telling him about your podcast, he's like, he told me you should start a podcast, you should start a podcast. And then he would like think of names. For me, like, night shifts are in type one and

Scott Benner 1:16:32
nine. I'm against other people starting podcasts. I've already done it. And I've advertised as I need to satisfy and I don't need you all out there splitting up the course. Yes. In

Diane 1:16:42
fact, my co workers her endocrinologist, I guess has like a local podcast. And I went to she told me her doctor's name and I went to her podcast. And guess who her guest was on that show was Ginni. Oh, no. I was like, Oh my gosh, I was like, Oh my gosh, this is so crazy. I listen, I've listened to Jenny So many times on on juicebox. And he or she is talking to my co workers doctor. I was just like, that's just a small world, but not a small world. Yeah, no

Scott Benner 1:17:16
kidding. It's very funny. Well, Jenny's got a good microphone. I paid for it that other podcast and send me some money. She probably sounded fantastic on it. She did

Diane 1:17:24
sound fantastic. And I paid for that. Well, good for you. So you help people in so many ways. It's amazing.

Scott Benner 1:17:33
Oh my gosh, you're very nice. Okay, well, thank you very much. Hold on one second for me.

Arden started using a contour meter because of its accuracy. But she continues to use it because it's adorable and trustworthy. If you have diabetes, you want the contour next gen blood glucose meter. There's already so many decisions. Let me take this one off your plate. Contour next, Doc com slash juice box. A huge thank you to one of today's sponsors. G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juice box. you spell that GVOKEGLUC AG o n.com. Forward slash juicebox. I'm just I'm still rubbing my face on my new cozy Earth stuff. The the pullovers I don't know what it's made out of. I mean, I guess I could figure it out. But who cares? I think it's whatever is a cloud, like fat no. Beautiful, so soft. I'm gonna say this. And I've already done what I need to do for cozy Earth today. Like I've made my money. You know what I mean? Like, I don't have to keep talking. I don't know what it is about cozy Earth stuff. Put it whatever words to what you want once you get it when I wear it. I feel like I've upgraded myself. That's the best thing I can say. Like when I put on like cozy Earth joggers, like, yeah, they're sweat pants, right? But I put them on. I think this is what Drake must be wearing right now. Like when Drake puts on some sweats to go out and get like, you know, like coffee or something. He's whatever he's wearing. He's gotta feel like this. cozier.com use the offer code juice box at checkout. And you can be a Canadian rapper too. Or a podcaster I guess. Hey, if you have type one diabetes, or you're the caregiver of someone who is type one and you're a US resident, not so sorry, Drake, you can't do this. T one D exchange.org/juice. Box complete the survey, support the podcast support people with type one diabetes. You might really help yourself. T one D exchange.org/juicebox. Go fill out that survey. get logged on for me. Thank you. Lots of people with autoimmune seem to have trouble with their thyroid it and that's why I've made the defining thyroid series juicebox podcast.com. Click on defining thyroid the menu to find out more. Once there was a time when I just told people if you want a low and stable a one C, just listen to the Juicebox Podcast. But as the years went on, and the podcast episodes grew, it became more and more difficult for people to listen to everyone. So I made the diabetes Pro Tip series. This series is with me and Jenny Smith. Jenny is a Certified diabetes Care and Education Specialist. She's also a registered and licensed dietitian and a type one herself for over 30 years and I of course, am the father of a child who was diagnosed at age two in 2006. The Pro Tip series begins at episode 210 with an episode called newly diagnosed or starting over, and from there all about MDI Pre-Bolus Singh insulin pumping bumping and nudging variables exercise illness, injury surgeries glucagon long term health bumping and nudging how to explain type one to your family. Postpartum honeymoon transitioning all about insulin Temp, Basal. These are all different episodes, setting your Basal insulin, fat and protein pregnancy, the glycemic index and load and so much more like female hormones and weight loss. Head now to juicebox podcast.com. Go up in the menu at the top and click on diabetes pro tip. Or if you're in the private Facebook group, there's a list of these episodes right in the feature tab. Find out how I helped keep my daughter's a one C between five two and six two for the last 10 years without diet restrictions. juicebox podcast.com Start listening today. It's absolutely free. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com