#1737 Gesundheit
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Diagnosed at 45, Erin shares her journey with Type 1 diabetes, Graves’ disease, and heart issues, highlighting the vital importance of self-advocacy in a dismissive medical system.
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Scott Benner (0:00) Hello, friends, and welcome back to another episode of the Juice Box podcast. (0:10) Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. (0:14) Always consult a physician before making any changes to your health care plan. (0:21) Have you tried the small sip series? (0:23) They're curated takeaways from the Juice Box podcast, voted on by listeners as the most helpful insights for managing their diabetes.
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Erin (2:30) Hi. (2:30) My name is Erin, and I have type one diabetes. (2:35) I was diagnosed in 2020, and I have a couple of other autoimmune issues as well.
Scott Benner (2:41) Erin, how old are
Erin (2:41) you? (2:42) 50.
Scott Benner (2:42) You say you were diagnosed at 45?
Erin (2:44) Correct.
Scott Benner (2:45) Okay. (2:46) A couple of other auto oh, wait. (2:47) We'll find out about it. (2:48) Let's not rush. (2:50) Do you have kids?
Erin (2:51) I do. (2:51) I I'm married. (2:52) I have two kids. (2:54) I have a dog that I tried to drug with trazodone before we started recording, so he would stop annoying me. (3:01) That has kind of failed.
Erin (3:04) Mhmm. (3:05) And yeah. (3:06) Like, teenager teenagers, two of them, 13 and 16.
Scott Benner (3:09) You don't have drugs in the house to calm them down. (3:11) Right? (3:11) Just the dog?
Erin (3:12) I gave everyone a trazodone slurry before we started reporting.
Scott Benner (3:16) What kind of dog do you have that needs to be medicated so that
Erin (3:20) Neurotic. (3:21) He actually just had surgery, so that's why we
Scott Benner (3:25) he Oh.
Erin (3:26) He's he is getting trazodone every day just to help him chill out, to not ruin his stitches. (3:33) He ate a bunch of rawhide, and he had to have $15,000 abdominal surgery. (3:38) Oh my god. (3:40) And now Christmas and Hanukkah are ruined, and no one's going to college. (3:45) So I
Scott Benner (3:46) I what kind of dog is it?
Erin (3:47) He's a mutt. (3:48) He's like a 40 pound Australian shepherd slash schnauzer mix.
Scott Benner (3:55) Can I say something unfeeling? (3:56) How much would a new dog have cost?
Erin (3:58) Don't even get me started.
Scott Benner (4:00) How old is he?
Erin (4:01) Oh, no. (4:03) Wait.
Scott Benner (4:03) How old? (4:04) Eight. (4:05) Oh my. (4:05) How what's his life expectancy?
Erin (4:08) I know. (4:09) Trust me. (4:09) I've already done all of this math, and I just couldn't do it. (4:12) I think maybe 15 was what I was hoping. (4:15) I always looked at him and thought, this dog is definitely gonna live a long, long time to be one of those, like, blind, stumbling, stinky mutts.
Scott Benner (4:25) Let me
Erin (4:26) You're so Hopefully, now he can still do that.
Scott Benner (4:28) Well, let's hope. (4:29) Here here's the most important question. (4:30) Who gave him the rawhide? (4:31) Who's at fault?
Erin (4:32) It's actually the best of circumstances. (4:35) It's my fault. (4:36) So I can't blame my husband or my kids.
Scott Benner (4:40) I just I just wanna point out what a fully actualized adult female sounds like. (4:44) Did you hear what she said? (4:45) It's the best of circumstances. (4:48) It's my fault. (4:49) And you meant by that, Erin, if it was someone else's fault, you would carry this anger to your grave.
Scott Benner (4:53) Is that correct?
Erin (4:54) There would be hell to pay. (4:55) Yeah. (4:56) Yes. (4:57) Yep. (4:57) I was like, you need to they called it milking.
Erin (5:01) They actually had to, like, squeeze the mass up through his duodenum and pylorus and then pull it out with, like, a scope down his throat.
Scott Benner (5:12) Yeah. (5:14) I'm imagining fifty years from now, you're 100. (5:18) Your husband's dying. (5:20) But it was his but it was his fault about the rawhide in my alternate universe. (5:24) And instead of telling him about your wonderful long life or how happy you are with your children and you can't believe that you've lived to a 100 years old, you say to him, do you remember the time you cost us $15,000 by giving that dog a ride?
Scott Benner (5:37) Do you imagine that was what would have because that's what I feel like. (5:39) You know, I I am so worried that the end of my life is just gonna be a four days of my wife sitting in the hospital telling me all the things I did wrong.
Erin (5:46) Yeah. (5:46) She probably has a list.
Scott Benner (5:48) Oh, you thin her head. (5:49) The
Erin (5:49) actual list.
Scott Benner (5:50) It's etched right on her head, and it's definitely written down somewhere. (5:53) I I I I'll say this over and over again till the day I die. (5:56) That girl is still mad at me for whatever the first thing is I did wrong to her. (6:00) For she's still aware of it.
Erin (6:02) Okay. (6:02) Well, you crier, like, unrolling, like, a scroll of just, like Well,
Scott Benner (6:08) let me ask you another question. (6:09) Why did you try to kill the dog?
Erin (6:11) Oh, well, I was actually the rawhides are dental enzyme rawhide chews, so they were I was trying he he had had some dental issues, and they were supposed to just be I was buying them to help his teeth and help him stay healthy. (6:28) I think what was happening was that the idiot was swallowing them whole, and they weren't really they weren't passing through.
Scott Benner (6:35) Okay. (6:35) So this is, the other day, our puppy is vomiting on the floor. (6:40) I go, what is happening? (6:41) What did you people do to this dog? (6:43) Nothing.
Scott Benner (6:44) Nobody knows what happened until we dig it out of the pile of vomit, this thing that my wife gave him. (6:50) And I was like, Kelly, I swear to you, I know this is not the right way to talk to you, but I have told you a thousand times not to give these to the dog. (6:58) They throw up when you eat them. (7:01) Why do you keep buying them? (7:02) She doesn't know.
Scott Benner (7:03) I think it's because the package is nice or they look cute or or I I can't figure it out, and she's not dumb. (7:10) She's actually really, really smart until it comes to stuff like this. (7:14) And then Yeah. (7:15) I I I don't what happens to you girls? (7:17) Seriously.
Scott Benner (7:17) You just
Erin (7:18) I don't know. (7:19) I know. (7:21) I honestly didn't know. (7:22) I thought I was doing something good, and now here we are.
Scott Benner (7:25) I'm shaming you about it. (7:27) I'm so sorry. (7:27) I'm only saying what your husband was thinking and was too smart to say when he found out it was $15 to get the dog help.
Erin (7:33) Oh my god. (7:34) No. (7:34) He still doesn't know. (7:35) He doesn't wanna know. (7:36) He wants to remain completely ignorant about the whole situation.
Scott Benner (7:39) He's unaware of the cost of the of the dog fixing.
Erin (7:42) Yeah.
Scott Benner (7:43) Does he know that you are at fault?
Erin (7:45) Yes. (7:45) Oh. (7:46) He does.
Scott Benner (7:46) And he has not you've now you're gonna tell me you've been married for more than seventeen years. (7:50) Is that correct?
Erin (7:51) Oh, yeah. (7:51) Yeah. (7:52) Twenty some
Scott Benner (7:53) Mhmm.
Erin (7:53) Years, and he's a lot nicer than me, so he won't hold it against me for till the end of time. (8:00) Like, I would have.
Scott Benner (8:01) In that level. (8:01) Oh, I hope this has been a nice reflective mirror for everybody who's been listening. (8:04) Let's move on to your stuff. (8:06) You had diabetes five years ago. (8:08) How did it present?
Scott Benner (8:09) What did you, what did you see first? (8:11) When you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time? (8:19) I love the warm up period every time I have to change it. (8:22) I love that when I bump into a door frame, sometimes it gets ripped off. (8:25) I love that the adhesive kinda gets mushy sometimes when I sweat and falls off.
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Erin (10:17) I took a course of steroids to break a migraine cycle in, I don't know, maybe May 2020, and then I immediately started noticing symptoms of increased thirst, frequent urination. (10:34) Just as, like, a sub context about the health care system, the reason that I had the cycle of migraines that needed to be broken is because I hadn't gotten my my Botox injections. (10:48) I I'm supposed to get those every three months, and they've really been life changing for my migraines. (10:53) I used to spend a lot of time in a dark room, tried a bunch of different medications, and the Botox has been really helpful.
Scott Benner (11:00) Where do they I'm so sorry. (11:01) Where do they shoot the Botox to help the migraines?
Erin (11:04) They actually do a ton of small injections all around your skull, around your, like, around your face. (11:11) Like, they do it around my eyes. (11:13) Mhmm. (11:13) They're nice, and they give me a couple of little extra boosts in between, like, my eyebrows to get rid of that little wrinkle. (11:21) And then they do, like, down your neck and across the shoulders, anywhere that you have tension.
Erin (11:27) Like, so if you hold your headaches kind of, like, in your jaw, they might put it in your jaw. (11:32) But it's not a pleasant procedure. (11:34) It it's not I mean, it's not terribly painful, but it's it's it definitely hurts a bit. (11:40) A lot of little little tiny injections. (11:41) Yeah.
Erin (11:42) Yeah.
Scott Benner (11:42) A lot of little injections. (11:43) Right? (11:43) Yeah. (11:44) Okay.
Erin (11:44) So wait. (11:45) Wait. (11:45) So And the reason I didn't get it is because at the time, it was going to cost me, like, 7 or $800, and I had just had my first of two heart attacks. (11:59) I had a spontaneous coronary artery dissection in 2019, and I had so many medical bills from that that by the time my Botox appointment rolled around, I was like, I'm not doing this. (12:11) I just can't.
Erin (12:12) I I can't.
Scott Benner (12:13) Arin, let's slow down a little bit. (12:14) Hold on a second. (12:15) You wait. (12:16) Okay. (12:16) Let's do the list.
Scott Benner (12:18) What's start at your earliest age. (12:21) What was your first medical issue?
Erin (12:23) I was 12, and I got my first period. (12:27) And I almost bled stuff because I had it's called ITP. (12:34) It stands for immune thrombocytopenia purpura, and it's basically a really, really low platelet count. (12:42) So I didn't have any clotting. (12:45) You know, I wasn't able to clot.
Erin (12:46) So and I didn't know because it was my first period that it it that it was abnormal.
Scott Benner (12:54) Oh, you were just draining to death and nobody knew?
Erin (12:57) Correct. (12:57) Yeah. (12:58) And I prior to getting my period, while I was 11 years old, I did have a lot of bruising. (13:05) You know, you would just practically bump into me or touch me, and I would bruise. (13:08) My parents thought my brother was beating the top of me.
Scott Benner (13:12) Oh my gosh. (13:12) Hey.
Erin (13:13) You poor guy. (13:14) Immune thromb say it. (13:17) Thrombocytopenia purpura.
Scott Benner (13:20) It's an autoimmune disorder.
Erin (13:21) It is.
Scott Benner (13:22) Yeah. (13:22) So you got your first autoimmune disorder when you were 12. (13:25) It tried to kill you through your lady bits, but you fought back. (13:28) And then how did you fight back? (13:30) Did your parents, like, go, hey.
Scott Benner (13:31) Did did did Dracula just bite Erin? (13:35) What's going on? (13:35) She's lying on the floor. (13:36) She's very pale.
Erin (13:37) Yeah. (13:38) That I was lying on the floor very pale on Thanksgiving, and they took me to the emergency room. (13:45) And I got blood transfusions and was in the hospital for a bit. (13:49) And that's store sort of where my mistrust of doctors and nurses started. (13:56) Just even with that experience, I remember a nurse in the emergency room arguing with me and telling me she asked me how many pads I had on, and I because I was, like, stuffing them in there Yeah.
Erin (14:08) To try to collect all this blood. (14:10) And I told her, I said I have five, and she argued with me about how many I had, and she ended up being wrong. (14:17) But it was just like this crazy experience of just being a child and being very vulnerable and, like, having this nurse. (14:24) Like, there aren't five. (14:26) There are only three.
Erin (14:27) Like, why are you lying about how many pads you have on? (14:30) Like, I mean, just it was
Scott Benner (14:32) That was said to you? (14:33) Why are you lying about how many pads you have on?
Erin (14:35) Yeah. (14:35) It was really not a good experience
Scott Benner (14:38) You know,
Erin (14:39) the like that because I didn't know how to, like, advocate for myself. (14:42) Yeah. (14:43) Although, yeah.
Scott Benner (14:43) Why would you ask? (14:44) Why would you think you should have to? (14:46) Or or I mean, also, you're 12. (14:48) Maybe it's your first period. (14:49) You didn't know what was going on.
Scott Benner (14:50) Right? (14:51) Also, don't go to the hospital on a holiday if you can help it because
Erin (14:54) That's true.
Scott Benner (14:55) Was it was their b team. (14:56) If you get stuck working on Thanksgiving, it's not because you really know what you're doing. (15:00) You know what I mean? (15:01) Yeah. (15:01) Yeah.
Scott Benner (15:02) Sorry for all of you who are nurses that are like, hey. (15:05) I I had to work on Thanksgiving last year. (15:07) But, like, it usually means newer or, you know, less you you don't have as much swing about or say about the the schedule.
Erin (15:12) You know? (15:13) True.
Scott Benner (15:13) So Yeah. (15:14) Okay. (15:14) So you're there, and and and did they diagnose this issue at the hospital? (15:19) It takes a while for that.
Erin (15:20) It did take a while. (15:21) And from what I understand, the treatment for ITP is different nowadays, and it's not as complex as it was at the time back in the eighties. (15:32) First of all, they thought maybe I had leukemia at first. (15:34) And then I I finally wound up at a pediatric oncologist, hematologist office, and they diagnosed me correctly. (15:46) The treatments at the time were I got frequent, like, short injections of, like, chemotherapy drugs.
Erin (15:54) So I would have to go into the doctor's office, and they would they would they tried that. (15:58) I also went to the hospital every every month or so for something called, like, gamma globulin treatments, which is basically, like I think it's, like, concentrated blood product of some kind, like platelets maybe that that help boost your your platelet count.
Scott Benner (16:16) Okay.
Erin (16:17) So I was doing that. (16:18) And then, ultimately, I ended up having my spleen taken out because none of the treatments worked. (16:24) I continue my platelet count just continued to fall back to almost nothing, and it can be dangerous to to be walking around being able to clot.
Scott Benner (16:33) They took the spleen out because of
Erin (16:36) The way it was described to me is that the spleen kind of is the filtration sys system for your blood, and it would if if you remove it, your platelets don't get filtered out. (16:46) That's the simple way the doctor explained it at the time.
Scott Benner (16:49) Yeah.
Erin (16:50) And that kind of stuck with me. (16:52) I don't you know, that's probably a very simplistic description, but that's what Yeah.
Scott Benner (16:57) I understand. (16:57) That's how they told it too. (16:58) So when IEP doesn't respond well to first line treatments like steroids or IVIG, doctors may recommend a splenectomy, surgically removing the spleen so that it, a, is where many antibody coated platelets are destroyed, and two or b, I guess, it's also a major site where those antibodies are produced in the first place. (17:19) So they're trying to take a piece out of the chain that's so if you take out the spleen, they say fewer platelets get destroyed, antibody production may decrease. (17:29) Many people see their platelet counts rise significantly afterwards.
Scott Benner (17:32) So did it work?
Erin (17:33) It did.
Scott Benner (17:33) Yep. (17:34) Oh, hold on. (17:35) You're fixed. (17:35) Yeah. (17:36) Yeah.
Scott Benner (17:36) Happily ever after. (17:37) No? (17:38) No.
Erin (17:38) No. (17:38) The end. (17:39) It was nice talking to you. (17:40) Yeah.
Scott Benner (17:41) What a great little episode. (17:42) Yeah. (17:43) What happened next? (17:43) What what happened after this?
Erin (17:45) Well, while I was in the hospital for one of those actually, I think the gamma globulin that I'm referring to is what you had mentioned, the IVIG Mhmm. (17:53) Treatment. (17:54) I think that's what that's called, but I don't remember what IVIG stands for. (17:58) Anyway, when I was in the hospital for one of those treatments, there was a doctor who came in to visit me while I was alone. (18:06) My parents worked a lot when I was young.
Scott Benner (18:09) Arin, I'm not gonna be able to take this. (18:11) Is going where I think it's going? (18:12) Because I it's only Monday. (18:14) Yeah. (18:15) Go ahead.
Erin (18:15) I mean, it's not as bad as it could have been. (18:17) And, honestly, I didn't realize what happened until I was in my twenties and was like, wait a minute. (18:22) But he came in and just, like, undid my gown and, like like, touched me in places that he should not
Scott Benner (18:32) Right.
Erin (18:33) Just to say the least. (18:35) And I didn't know how to handle that at all. (18:41) I just got I just completely shut down and froze. (18:46) I mean, I just literally physically froze, couldn't speak, was very angry. (18:52) I didn't like it.
Erin (18:53) I wanted him to get the heck out of the room. (18:55) You know? (18:56) And then later on, he came back when my parents were there. (19:00) And I, you know, I didn't have the words to tell them what happened. (19:04) I didn't really understand what happened.
Erin (19:07) So I just was pretty nasty to him, and my parents were kinda, like, embarrassed because, you know, back in back then, you know, you were supposed to be respectful and polite and bow down for a doctor. (19:20) You know? (19:21) So
Scott Benner (19:22) yeah. (19:22) So did it ever get brought up in as in the rest of the no. (19:26) Do your parents know today that that happened, or would they if they were alive? (19:29) No. (19:30) Okay.
Scott Benner (19:30) Alright. (19:31) Yes. (19:31) Oh, well alright. (19:32) Well, I mean, I guess we gotta give you a pass on trying to kill the dog. (19:36) Right?
Scott Benner (19:36) Like, I mean, seriously, you you Yeah. (19:39) Somebody owes you a pass.
Erin (19:40) And it it it's just it's just one of the many things that's happened over the years that has just been so disappointing with doctors. (19:50) And, you know, just to bring it back to more recent times, when I was trying to figure out about this thirst, I immediately stopped taking the steroids because it was obvious to me. (20:03) My vision was actually the first thing to to go really blurry. (20:07) I couldn't see to drive. (20:09) Thankfully, I didn't really it was COVID times, so I didn't really need to to drive for work.
Erin (20:14) Mhmm. (20:15) But the blurred vision was terrible, and then the thirst and frequent urination came. (20:22) So I called the neurologist who had prescribed the steroids, and I explained what was happening with me. (20:29) And they were like, you're having vision problems? (20:31) You know, that could be a thousand different reasons you should call your PCP.
Erin (20:35) So I called the PCP, and she said, well, you really should talk to the neurologist because they're the ones who prescribe the steroids, and it's clearly, you know, a reaction to the steroids. (20:47) So that was leading me in a circle. (20:48) So I went to the eye doctor, an ophthalmologist, and told her what my symptoms were. (20:55) And she shrugged and said, well, welcome to your forties.
Scott Benner (21:00) Awesome.
Erin (21:01) I'm like, I understand that my vision over time will probably deteriorate, but this kind of happened overnight. (21:08) Is that is that a typical experience? (21:10) Like, maybe I'm just unaware of this part of the aging process. (21:15) Yeah. (21:16) But she just shrugged it off.
Erin (21:18) I ended up going to the emergency room, and then I also went and they they just sent me home. (21:24) They checked my eyes to see if there was any, like, damage to my eyes. (21:28) They really don't have a lot of tools at the ER to deal with, like, vision stuff. (21:33) So they did what they could there except test my blood sugar, whatever. (21:38) And then I also went to my endocrinologist.
Erin (21:42) And I sat in the endocrinologist's office, and I told the nurse, I think I have diabetes. (21:47) Because at that point, I've been reading a lot about my symptoms. (21:51) Mhmm. (21:51) And I thought maybe I had diabetes. (21:54) And I told her that, and I talked to the endocrinologist.
Erin (21:59) And he said, well, I'm gonna give you a prescription to get blood work done, and you can come back in four months. (22:06) So that's what I did. (22:09) And it was long enough that by the time I went back, I had an a one my a one c was 14, and my blood sugar I think that morning, it was, like, 300 and something. (22:21) Okay. (22:22) They finally pricked my finger, when I went back for that follow-up appointment with the with my blood work results.
Scott Benner (22:29) And you told them, I've been doing a little digging, and I think I have diabetes.
Erin (22:34) Yeah. (22:34) I told them my symptoms. (22:35) I'm like, I'm peeing a lot. (22:37) I'm so thirsty. (22:38) And I know people have talked about the thirst and on the on the podcast before, but it is just I remember chugging a Nalgene bottle beside my bed at night and choking on the water.
Erin (22:51) Like, I I was trying to swallow it just so I was trying to get it down so quickly that I couldn't swallow fast enough. (22:59) It was just a really intense thirst that I can't quite describe.
Scott Benner (23:03) Yeah. (23:04) So But you have other so you're also a person who gets are they cluster headaches or migraines, or what do you get?
Erin (23:11) Yeah. (23:11) I have the history of migraines, which I've had since I started my getting my period. (23:17) I think that hormonal change is where they started, and, I'm hoping that when I'm finished with menopause that they'll go away just because I've heard anecdotally that that does happen with some people.
Scott Benner (23:28) Question is is, like, your husband's used to not feeling well, but could he tell that you were extra sick before your diagnosis with type one?
Erin (23:35) Just the vision. (23:36) The vision. (23:36) He had to drive places. (23:38) I couldn't drive and see.
Scott Benner (23:40) So your vision's oh, wait a minute. (23:43) There's no so there's no answer about the vision just like, hey. (23:46) You can't see anymore. (23:47) Oh, well. (23:48) And then you're like, and I'm peeing a lot.
Scott Benner (23:49) I'm super thirsty, and no one says anything.
Erin (23:52) Right.
Scott Benner (23:52) Okay.
Erin (23:53) And I just imagine that when I was sitting in the endocrinologist's office that day that I mean, how many they have to have meters in every room, in every exam room. (24:03) I don't know why they didn't just just check my blood sugar.
Scott Benner (24:07) Right, man.
Erin (24:07) They just do
Scott Benner (24:08) it. (24:09) Well Just Why? (24:10) I mean, so far, you've got three stories. (24:12) Not nobody stood up in any of these stories and done the right thing. (24:15) So Yeah.
Scott Benner (24:16) Yeah. (24:16) It you figured out how. (24:19) Like, what's the last way they just finally you said they figured it out, but what I'm sorry. (24:23) Tell me again what happened where it was like, hey. (24:25) You have diabetes.
Erin (24:26) Yeah. (24:27) So I went back for the follow-up appointment with my test results. (24:31) They the the nurse looked at my results and then looked up at me, and she was like, and you're you're telling me you haven't eaten yet today? (24:40) I'm like, no. (24:41) And she was like, I'll be right back.
Erin (24:45) So I was like, oh god. (24:47) So she left the room. (24:49) She came back. (24:50) She said, I'm gonna have you talk to the doctor. (24:52) So I did, and I this doctor is such a nice man.
Erin (24:57) I'd been seeing him for about twenty years for my thyroid at this point. (25:01) I know his wife. (25:03) I watched his son grow up in the community. (25:06) I I looked at him like a father figure. (25:08) I know that he cares about me as a person, as a patient.
Scott Benner (25:12) Mhmm.
Erin (25:13) At that point, he definitely was taking things seriously, and I am very sure that he was regretful that he hadn't dealt with it four months prior. (25:22) Yeah. (25:22) But he he told me that I had diabetes, and he said, look. (25:26) Our office is about to close for lunch. (25:28) So what I'm gonna ask you to do is go and get yourself lunch, and then come back at 01:00, and we're going to show you how to use insulin.
Erin (25:39) So I think he knew I had type one just because I think he understood that I had a history of autoimmune disease. (25:45) So I think he he he I I at least didn't get a type two diagnosis. (25:50) Mhmm. (25:50) I didn't have to deal with that nonsense. (25:52) But so I left and went back after lunch.
Erin (25:55) And when I walked in this time, he said, you know, I've thought about it, and what I really think we need to do is send you down to the ER. (26:02) So I went down to the emergency room. (26:04) And from what I understand, he wanted me to go there so that I could get immediate testing, and that was the fastest way to do it. (26:10) Okay. (26:10) Was to send me in through the ER.
Erin (26:12) But when they tested me, they saw that I wasn't, like, fully in DKA, but whatever I don't know if your body becomes, like, acidic or whatever, but whatever test that measures that was concerning. (26:25) So I did get admitted, and I spent a week in the hospital where they brought my blood sugar down slowly with the, you know, the IV insulin. (26:35) Of of kind of funny incident about that is my my nurses were switching shifts at about eleven at night, and the nurse who was leaving said, okay. (26:49) Well, the doctor said that we're not supposed to put the rate above, you know, whatever the rate was. (26:55) And but he didn't put that in his chart in my chart notes.
Erin (27:00) So the nurses were standing there at 11:00 at night arguing with each other about where to set my insulin. (27:06) And I'm sitting there, and I'm like, oh my god. (27:09) If they give me too much insulin, I'm not gonna feel good. (27:12) I mean, I I didn't really understand diabetes
Scott Benner (27:14) Right.
Erin (27:15) At that point at all, but I did know that if they gave me too much, I wouldn't feel well, that I would go low. (27:21) Mhmm. (27:22) So I was like, pardon me. (27:24) Like, I I hate to interrupt
Scott Benner (27:26) You're arguing.
Erin (27:27) This conversation, but I I I I was present when when the doctor said not to go above this rate. (27:34) So if you could please consider setting it at the lower rate just because I don't wanna feel sick or get low blood sugar or whatever. (27:43) I don't even remember what happened. (27:44) I just remember them arguing at my bedside, and I thought it was insane.
Scott Benner (27:49) Hey, dummy. (27:49) Look over here. (27:50) I was listening, and I just need you to just pick the lower number. (27:55) Okay? (27:55) Especially because it sounds like one of you is going home, and the other one's probably about to go smoke weed then fall asleep in the lobby.
Scott Benner (28:01) So I really I need somebody to just just take care of me a little bit. (28:04) So now you have four stories, and nobody's, like, sticking up for you or doing a good job. (28:08) How does this keep happening to you? (28:10) Do you have bad luck? (28:11) Do you have a face people don't like?
Scott Benner (28:12) What is going on exactly?
Erin (28:14) I don't know. (28:15) I really feel like I'm, like, contagious almost with autoimmunity. (28:20) Like, I feel like I'm even though my kids are fine, they don't have the markers. (28:26) I did have them tested through TrialNet. (28:29) So, thankfully, they don't have anything.
Erin (28:31) But I just feel like I don't know. (28:33) When I well, I I mentioned this in my note to you. (28:35) I don't know if you remember, but my dog, my other dog, died of, apparently, there's, like, a canine version of ITP.
Scott Benner (28:45) What the
Erin (28:46) And he had it. (28:48) And I suspected that he had it because he was sneezing blood around the house. (28:53) And I was like, oh my gosh. (28:55) This dog is, like, bleeding through his, like, membranes. (28:59) And so me being, you know, a doctor, I'm like, oh, he must have low platelet count.
Erin (29:06) So I take him to the vet, and I'm like, he's bleeding. (29:09) And they looked at him, exam examined him, said he was it was fine. (29:14) He probably injured. (29:16) There's probably an injury inside of his nose that we couldn't see, and it continued to happen. (29:20) And I took him back to the bed about a month later, and he his platelets were so low that they he he had to be put to sleep.
Erin (29:27) It was so sad, but I felt like it was just a really crazy thing to have happen. (29:32) I I felt like this is nuts. (29:34) What? (29:34) Like, why am I so cursed with this crap?
Scott Benner (29:37) Yeah. (29:37) I think you're I think we have to call your, episode gesundheit too. (29:40) But I wait. (29:42) Stop. (29:43) This odd autoimmune issue that you had when you were 12, how many years later killed your dog?
Scott Benner (29:50) It was in 2022. (29:51) Get the fuck out of here. (29:52) Are you serious?
Erin (29:54) I am not kidding.
Scott Benner (29:55) Oh my god. (29:56) Oh my god. (29:57) Did dad flip you out a
Erin (29:58) little bit? (29:59) Like, the vet even. (30:01) I had I was having the same ridiculous conversation with the vet that I feel like I keep having on repeat with every medical professional that I see, which was, I think he has low platelets. (30:11) Can you test for that? (30:12) Can dogs get, you know, ITP?
Erin (30:16) And the vet is like, well, that's very unlikely. (30:19) What this probably is is blah blah blah. (30:21) And then he has to come back in the exam room later with his tail between his legs. (30:26) Literally. (30:27) Yeah.
Erin (30:27) Exactly. (30:29) Telling me, oh, yeah. (30:31) His platelet count. (30:32) It was so low. (30:33) It was, like, in the single thousands, which is very low.
Erin (30:37) Unbelievable. (30:38) Treatments for it at that point were so ridiculous and not it was gonna be torture for the dog. (30:44) Right. (30:45) And he was a very large, beautiful dog, so it was gonna be hard to take care of him.
Scott Benner (30:50) I gotta tell you. (30:51) This is insane what you're telling me. (30:53) That is the the oddest I mean, bad luck I've I think I maybe have ever heard.
Erin (30:58) Oh, well, actually, I I should mention. (30:59) I'm like, oh, so what happened? (31:02) I was so grief stricken by this by this dog dying that I had another spontaneous coronary artery dissection a few days after we had to put him to sleep. (31:12) Because you haven't asked yet, but I am Irish, and that relates to the autoimmunity. (31:18) But, also, I like to shove my emotions deep down inside.
Scott Benner (31:21) Mhmm. (31:22) Well, I could tell by you you having to use Botox to get the stress out of your forehead.
Erin (31:26) Yeah. (31:27) Instead of letting, you know, letting my emotions out, I just kind of stifle them, and then I feel like it comes out in bad ways, like, the heart attacks. (31:38) So I ended up in the hospital again with another coronary artery dissection.
Scott Benner (31:42) The first heart attack happens at what age?
Erin (31:44) 40 it was 2019, so 44.
Scott Benner (31:47) 44. (31:48) The year before you got diabetes. (31:50) Yeah. (31:50) The next the next one happens after the doc wait. (31:54) When does the next one happen?
Erin (31:55) 2022, so three years later.
Scott Benner (31:56) How come they don't kill you? (31:58) What's happening when like, what what's the process of I don't feel well to
Erin (32:02) Well, our cardiologist said it's because I'm lucky. (32:05) So it's
Scott Benner (32:06) Just say, I am not lucky. (32:08) Here's a story I'll tell you.
Erin (32:10) Yeah. (32:10) Yeah. (32:12) A a spontaneous coronary artery dissection, which is called a SCAD for short, which is I think is funny because of your stories about your child going
Scott Benner (32:21) to That'll also break your heart, SCAD Will, by the way.
Erin (32:24) I would always I I we drive to Florida pretty often because my in laws live there, and we always stop in Savannah on the way down. (32:32) So I always take selfies in front of the SCAD sign because I'm like like, it it just struck me as funny.
Scott Benner (32:38) Yeah. (32:38) Awesome. (32:38) Send them to me. (32:39) I'll cry. (32:40) That's fine.
Scott Benner (32:41) So It's when a tear What
Erin (32:43) it is?
Scott Benner (32:43) Hold on. (32:43) It's when a tear forms the wall of a coronary artery, the blood vessel that supplies the heart muscle. (32:48) Blood seeps between the layers of the artery wall creating a false channel that can compress the true lumen where blood normally flows. (32:55) This blockage restricts blood flow to the heart muscle causing chest pain, heart attack, or even sudden cardiac arrest. (33:01) Awesome.
Scott Benner (33:02) So you've you've had cardiac arrest, or how do you
Erin (33:04) I did not. (33:05) Okay. (33:05) I did have a myocardial infarction. (33:08) So I did not have cardiac arrest. (33:11) Thank god.
Erin (33:11) But I my dissections occurred more distally. (33:18) So the closer they are to the big heart muscle, the more dangerous it is and the more serious it is. (33:23) When they occur more distally like mine did, there's going to be less damage. (33:28) And so, you know, I am lucky, really, that they didn't occur closer to the big heart muscle. (33:35) And the only treatment for it they do a heart catheterization.
Erin (33:39) They did that both times, which is just a procedure, but it's still a little scary to be put under. (33:44) Mhmm. (33:44) And we you know, they read you all of the, like, things that could happen, including death. (33:48) You know? (33:49) Yeah.
Erin (33:49) It's a little it's scary to go through that. (33:51) But, really, the treatment is just time and a little bit of medicine. (33:58) I'm I'm only on a I'm I'm just on a beta blocker now. (34:03) So, you know, all things considered, they were you know, I really was lucky. (34:07) So in fact, you know, something I wanted to mention to you about the heart heart attacks is that I I've just listening to the stories, and I've listened to the podcast.
Erin (34:18) I think I'm up through episode, like, fifteen eighty something at this point. (34:23) I'm not caught totally caught up, but I've listened to all of them from the beginning. (34:27) And this type of heart attack occurs a lot of times in women who've just had a baby. (34:33) It happens to younger, healthier women. (34:36) And one of the stories that you had on real early on was about a gram was with a grandmother.
Erin (34:41) Mhmm. (34:42) And her I think her daughter had died of a heart attack pretty shortly after giving birth. (34:47) And I thought, oh my goodness. (34:49) I wonder if, like, that was what had happened to her.
Scott Benner (34:52) So Super interesting. (34:54) I I have to tell you, like well, first, let me ask. (34:57) Is there any other issues that we haven't gotten to yet? (35:00) I have Graves' disease. (35:02) Oh.
Scott Benner (35:02) Awesome. (35:03) When were you diagnosed with that just real quick?
Erin (35:06) In college.
Scott Benner (35:07) College. (35:07) Okay. (35:08) So the thing Graves' disease oh, okay. (35:11) Other autoimmune in your family line including My
Erin (35:15) dad has Graves' disease.
Scott Benner (35:16) Dad has Graves'. (35:17) Does anybody have type one? (35:18) No. (35:19) Okay. (35:20) Does anybody have bad luck?
Scott Benner (35:22) I'm just kidding. (35:23) I was teasing you. (35:23) I'm sorry.
Erin (35:23) We do tend to have Irish luck where we always have to do things more than once to get it right. (35:28) But Is that what they call
Scott Benner (35:30) is that what they call that? (35:32) Okay. (35:32) So your dad has Graves', but, like, going back to your family line, celiac because somebody got celiac. (35:36) No?
Erin (35:37) No. (35:38) And I I did get tested for that. (35:39) Thanks to you. (35:40) And I did also get tested. (35:42) This is an autoimmune, but one of the hardest things medically that I've dealt with has been low ferritin.
Erin (35:49) And I didn't know what ferritin even was before you started talking about it.
Scott Benner (35:55) Wait. (35:55) Is this the story, Erin, about how I've saved you? (35:57) Yes. (35:57) Speak slowly. (35:58) Speak slowly.
Scott Benner (35:59) Go ahead. (35:59) Thank you.
Erin (36:00) Yeah. (36:01) I insisted when they went to test my iron after. (36:04) I was so fatigued. (36:06) It was just absolutely crazy. (36:07) And I remember feeling the way you described.
Scott Benner (36:11) Okay.
Erin (36:11) I felt like you described with super fatigue. (36:15) I remember you said at some point you bent down to reach something off the ground, and you felt like you were just gonna keep falling
Scott Benner (36:21) Yeah.
Erin (36:21) On the floor or something like that. (36:22) I was like, bingo. (36:24) Yes.
Scott Benner (36:24) That's how you fell.
Erin (36:25) Yeah. (36:26) And I finally got and I had almost I I think my ferritin was one, and my iron and hemoglobin and all of that were were low as well.
Scott Benner (36:36) My goodness.
Erin (36:37) I ended up going to the emergency room with that because I was just there was I I just thought something was very wrong. (36:43) I thought I was gonna die. (36:45) Mhmm. (36:45) And I ended up getting three consecutive days of iron infusions.
Scott Benner (36:49) Okay.
Erin (36:50) And those brought my iron up to, like, six or something or my baritone.
Scott Benner (36:56) Not high not high enough? (36:57) So No. (36:58) Not You know why? (36:59) Because in the hospital, they give you this little pissy amount of it. (37:02) Not like they would if you went to an infusion center and had a hematologist working with you.
Scott Benner (37:06) They give you they give you a little bag instead of the the the whole the whole game.
Erin (37:11) Yeah. (37:11) Yeah. (37:11) Yeah. (37:11) And I did. (37:12) That's what I had to do was go into the infusion center and then get another like, get an infusion.
Erin (37:17) And so far, so I mean, I just actually had it tested, and it was, like, 46. (37:22) It went up
Scott Benner (37:23) a little higher. (37:24) Are you still bleeding?
Erin (37:25) No. (37:25) No. (37:26) Okay. (37:26) I got an IUD placed after because I wanted to rule that out as, like, a cause of the low iron.
Scott Benner (37:33) But that's not been it.
Erin (37:34) Well, I mean, it's we'll see. (37:36) I I get the test done every three months, so I I'll get tested one more time before I go back to the hematologist. (37:43) So I'm curious if it will continue to fall down lower than 46. (37:47) But
Scott Benner (37:48) Four so 46 for your ferritin is not terrible. (37:51) Like No. (37:52) We it's not as high as we want it to be either.
Erin (37:54) Right.
Scott Benner (37:55) Yeah. (37:55) Yeah. (37:55) Yeah. (37:55) Right. (37:55) So do you still
Erin (37:56) have symptoms? (37:57) If I'm tired. (37:57) I'm like, I've been tired since 2009. (38:01) Like, I have children. (38:02) Bitch, though.
Erin (38:03) Tired. (38:04) Like
Scott Benner (38:05) Wait. (38:05) So what what is your plan? (38:06) Are you gonna get another infusion if the number comes back lower again, or are you having a doctor that's even willing to to talk about that 70 ferritin? (38:14) Because you remember doctor Yeah. (38:15) Benito said 70 bare bones for a woman of menstruating age.
Erin (38:20) Yes. (38:20) Yeah. (38:21) Yeah. (38:23) Yeah. (38:23) I'm I'm definitely gonna talk to him.
Erin (38:25) I'm gonna kinda wait and see where it goes from 46 and and see what he see what he thinks. (38:30) I'm gonna give him a chance. (38:31) He disappointed me with his when I developed the low ferritin and low iron, I also when I was in the hospital for that, they they saw that I had really low blood pressure, and I also had developed, like, a tremor. (38:49) And I was and and I don't know why. (38:53) I don't know what the cause is.
Erin (38:55) I mean, I assume it's autoimmune, but I don't know what the cause is of these additional problems. (39:00) So I've been talking to all my doctors about it because I'm not sure what the answer's going to be or if I even will get an
Scott Benner (39:08) Right.
Erin (39:09) So whenever I described my tremors to him, I described them like this. (39:15) I said, they're sort of like when you're cold and you're shivering. (39:19) That's I like, I wake up, like, just with that kind of tremor.
Scott Benner (39:25) Okay.
Erin (39:26) And he looked at me and said, have you considered that you might be cold?
Scott Benner (39:30) Oh, is he still alive, or where'd you hide his body?
Erin (39:32) And this guy is, like, seven feet tall. (39:34) He's seriously so tall. (39:36) I'm like, I'm gonna stand up on the exam table. (39:38) Like, punch.
Scott Benner (39:39) Beechy to death. (39:40) That's
Erin (39:40) in hey.
Scott Benner (39:42) You considered that you might be cold? (39:44) Also, have Graves' disease. (39:45) Right?
Erin (39:45) Right.
Scott Benner (39:46) So can't that be impactful on that as well?
Erin (39:48) It it definitely could. (39:50) I mean, I I did have the radioactive iodine treatment for that, and I'm on I'm on levothyroxine. (39:56) Right. (39:56) So it could have but it could have been possible that I was being overmedicated for the thyroid. (40:01) I was really hoping that you would ask me what my TSH is.
Scott Benner (40:06) You can just tell me. (40:07) Y'all don't have to wait till me. (40:08) Yeah. (40:08) I guess.
Erin (40:09) It's like, don't play games there. (40:11) Shit. (40:11) It's it was ten last time. (40:14) Oh. (40:15) I know.
Erin (40:16) And I don't I don't know why that my TSH is over 10, and my free t four is normal. (40:23) It's, like, perfect. (40:24) And I don't Graves' disease is one of the things. (40:27) I just haven't done a nosedive into research about the thyroid. (40:31) I, like, I just can't.
Erin (40:33) You know? (40:34) I've already learned way too much about diabetes and the SCADs. (40:38) I'm done learning things. (40:40) So I don't really truly understand the relationship between the TSH being elevated and still the three t four showing as normal.
Scott Benner (40:49) Right. (40:49) Right. (40:50) And so you're having trouble. (40:52) You just don't know where it's coming from. (40:53) Do you wanna do do you wanna do a fun exercise for a second?
Erin (40:56) Sure.
Scott Benner (40:56) Do you wanna ask the Internet?
Erin (40:58) Oh, I definitely have. (40:59) I'm a
Scott Benner (40:59) huge What did you
Erin (40:59) talk GPT fan.
Scott Benner (41:01) What did it come up with?
Erin (41:02) No. (41:03) I mean, it it didn't really have any answers. (41:06) It's it did suggest POTS, I think, for the blood pressure and tremor. (41:11) I had my neurologist do, like, a Parkinson's. (41:14) She did, like, a little neurological exam on me, and she was she said that the results were were good because I was worried that I had something like that.
Scott Benner (41:22) Hey. (41:22) Have you had COVID?
Erin (41:23) I have.
Scott Benner (41:24) Do you think you have long COVID?
Erin (41:26) I mean, I guess I could, but I don't not not that I've ever been told or I haven't noticed anything in particular.
Scott Benner (41:32) You haven't noticed anything? (41:33) Like, you don't get, like, wasted, like, after activity and can't bounce back for days or anything like that?
Erin (41:39) I I do kind of but I always attributed it to the heart attacks because I do have a little bit of impact from those just on my, like, energy level. (41:49) So
Scott Benner (41:49) Yeah. (41:50) No. (41:50) You mean you have a a a number of different issues going on. (41:52) That's for sure. (41:53) It's a lot to kind of try to consider while you're trying to figure out, like, what's going on with you.
Scott Benner (41:58) So let's do real quickly just to to check. (42:01) Persistent per per oh, excuse me. (42:03) Persistent fatigue or extreme tiredness. (42:05) Yes or no? (42:06) Yes.
Scott Benner (42:07) Fever, chills, or sweats? (42:08) No. (42:09) Unexplained pain, muscle aches, joint pain? (42:11) No. (42:12) Brain fog?
Erin (42:13) Oh, yeah.
Scott Benner (42:13) Headaches, dizziness? (42:15) Yes. (42:15) Yes. (42:16) Sleep disturbances, pins and needles sensation?
Erin (42:18) Sleep disturbance, but no pins and needles.
Scott Benner (42:20) Shortness of breath, difficulty breathing? (42:22) No. (42:23) Do you have a cough? (42:24) No. (42:24) Chest pain, palpitations, faster pounding heart?
Erin (42:28) No. (42:28) I I have intermittent chest pain, and that's normal from the heart
Scott Benner (42:31) of think that might be the Irish thing too. (42:34) Diarrhea, stomach pain, constipation, bloating? (42:36) No. (42:37) Changes in smell or taste, skin rashes, hair loss?
Erin (42:40) Hair loss.
Scott Benner (42:41) Hair loss. (42:41) So, I mean, a lot of this stuff overlaps with different things, obviously. (42:45) I don't know that you classically feel like long COVID. (42:47) I'm not sure. (42:49) But it would be a thing you'd really notice.
Scott Benner (42:51) It would have been like you had COVID and then it ended, and then you were like, my god. (42:56) My just changed a lot. (42:58) Like, you have you didn't have a big shift like that. (43:00) Right?
Erin (43:00) No. (43:01) I didn't. (43:01) Okay.
Scott Benner (43:03) We're not really ready to talk about it here on the podcast, but I interviewed a lady not long ago who told me how she used nicotine patches to help her with her long COVID. (43:15) And right? (43:16) And I went down to my wife who was struggling and been struggling for a long time, and I said, I'm gonna slap a nicotine patch on your ass every day for thirty days and see what happens. (43:26) And you know what happened? (43:27) What?
Scott Benner (43:28) She feels a lot better.
Erin (43:29) That's nuts.
Scott Benner (43:30) Yeah. (43:31) It's cray cray. (43:32) But I'm not ready to talk about it yet because I don't have enough of the, like, long range details of it. (43:36) But
Erin (43:37) I happened to have some nicotine patches because of my 16 year old convincing the doctor that he needed nicotine replacement therapy for his Zinn's addiction.
Scott Benner (43:47) Oh my god. (43:47) Did you try just hitting him? (43:49) Like because that's what we would have done in the seventies. (43:51) They would have just, like, smacked him and then put him in a room and left him there for a couple weeks then brought him out again. (43:55) Do people know how parenting used to work?
Scott Benner (43:57) You grew up with it, Erin. (43:58) Right?
Erin (43:59) Exactly. (43:59) And I do. (44:00) I tell him. (44:01) I'm like, if this were 1987, I would be hitting you with my shoe right now.
Scott Benner (44:07) Just so you know.
Erin (44:08) If not, it's not not allowed to do that.
Scott Benner (44:10) So we're gonna get you a nicotine patch for your zen. (44:12) And by the way, where do you get money for that?
Erin (44:14) Exactly. (44:15) I have no idea. (44:16) I don't I probably don't wanna know.
Scott Benner (44:18) Yeah. (44:19) Possible. (44:20) So dig a little more into your heritage thing. (44:22) Like so I mean, you've brought it up a couple of times. (44:25) I didn't bring it up.
Scott Benner (44:26) But anxiety, stress, chest pain, what else do you think is from your Irish background?
Erin (44:34) I don't know. (44:35) You have a lot What do you Do
Scott Benner (44:36) you do do does your does your life, health wise, and your mental health and all that, does it mimic your mom or your dad?
Erin (44:43) Just the shoving the emotions deep down definitely is, you know, I yeah. (44:48) I mean, that that's huge.
Scott Benner (44:50) You went to church every Sunday, did you?
Erin (44:52) Yes. (44:52) Mhmm. (44:52) Oh, I'm Jewish now, though. (44:54) I I I I converted.
Scott Benner (44:56) For a boy? (44:58) Yes. (44:58) Oh, that's nice. (44:59) Does the does the guilt transfer? (45:01) Does it feel the same?
Erin (45:02) It's completely transferable. (45:04) It's coming in quite handy.
Scott Benner (45:05) I I just but I I mean, look. (45:07) My wife has a background, like, similar to yours probably, like, bright, like, Irish English, that kind of thing. (45:13) And and, I mean, the the amount of the amount of times that I look over at my wife and she's rubbing her chest, and she's like, I'm gonna have a heart attack. (45:20) And I'm like, I mean, I really feel like you would've had it by now. (45:23) It's it's been
Erin (45:25) Yeah. (45:25) I mean, I have that feeling all the time. (45:27) I mean and some certain stressors definitely make me hold my chest and take deep breaths and try to remember where I put the nitro.
Scott Benner (45:37) But it's yeah. (45:38) Well, but you've had one, though. (45:39) I mean, it's a different story for you. (45:41) You know what I mean? (45:41) Like, my wife's had, you know, stress tests and blah blah blah.
Scott Benner (45:45) She doesn't have any problems with her heart. (45:47) Like, she's just you know, she's works really hard, and she has a high stress job. (45:52) And sometimes the stress gets to her, and I see her pushing, you know, between her clavicle and, like, over here and, like, wondering. (45:58) And I'm like, you alright? (46:00) She's like, oh, my chest hurts.
Scott Benner (46:01) I'm like, in the same place. (46:02) Always in the same place. (46:03) It's always top right more. (46:05) You know? (46:05) Yeah.
Scott Benner (46:06) Yeah. (46:06) And is she you know, you should try stop working. (46:09) I can't stop working.
Erin (46:10) That's where my pain was in my it radiated more to the right side of my chest and then in my in my joints. (46:18) I had pain in my joints, in my upper body Mhmm. (46:21) And only my upper body. (46:23) I thought it was so bizarre that I didn't have you know, every knuckle hurt in my hands, but my knees didn't hurt. (46:29) My elbows, my shoulders
Scott Benner (46:31) Yeah.
Erin (46:32) All my joints were so sore. (46:34) And I think I did a really good job convincing the emergency room doctors that I had Lyme disease because that was what I thought. (46:43) I thought, I have I think I have Lyme disease. (46:46) Okay. (46:46) So my dad had just had it, and he described it as, a roving joint pain.
Erin (46:52) And that's kinda like what I was feeling. (46:54) And they were about to send me home with some pain pills. (46:58) And, thankfully, my troponin levels came back right before they discharged me, and they were like, actually, never mind. (47:04) We're gonna
Scott Benner (47:04) You might get to stay for a little while. (47:06) Yeah. (47:07) Are are you are you a hypochondriac? (47:10) Like, do you see a lot of ill no. (47:11) You're you're always right?
Erin (47:13) I mean, like, isn't that, like, if you're wrong?
Scott Benner (47:16) Yeah. (47:17) No. (47:17) No. (47:17) I I just wanted to make I I wanted to make sure that you weren't leaving out the other 37 things that you thought you had that you didn't have. (47:22) That you just you just got lucky on four of them.
Scott Benner (47:25) That's
Erin (47:25) all. (47:25) I thought that was a reasonable guess as to what was wrong with me Mhmm. (47:30) With the with the joint pain.
Scott Benner (47:31) Okay.
Erin (47:32) But it turned out to be and I and that's that happened again with the second incident too, so I kinda knew what
Scott Benner (47:37) to look for. (47:38) Right on. (47:39) Well, I mean, honestly, limes is a thing that everybody limes, pots, all that stuff is where people land when they can't get they can't get answers about the sorts of things that you're describing. (47:50) Right. (47:50) Because it it leaves you in nebulous land.
Scott Benner (47:53) What do you have? (47:53) I it it sounds like lupus to me. (47:55) Like, well, what does that mean? (47:56) Like, you know what I mean? (47:57) It and especially the way doctors you know, the way medicine's set up, a lot of these things are diagnosis of, how do they put it?
Scott Benner (48:04) Diagnosis of elimination. (48:06) Right? (48:06) Like, you don't actually know that this, this, and this equals that. (48:10) It's well, you don't have all these other things, so we've eliminated these things as your possible issue, which leaves us with this smaller pool of more nebulous stuff that it could be. (48:19) Yeah.
Erin (48:19) And it's not as satisfying of an answer.
Scott Benner (48:21) No. (48:22) Of course not. (48:22) No. (48:22) There's no answer that's satisfying.
Erin (48:24) Yeah. (48:24) You probably you know?
Scott Benner (48:26) Uh-huh. (48:26) No. (48:27) The answers are satisfying when your problem goes away. (48:30) That's that's that's the end. (48:32) And that doesn't happen enough for people who have stuff that overlaps like this, which a lot of the times does with autoimmune.
Scott Benner (48:37) A lot of overlapping stuff.
Erin (48:39) Yeah. (48:39) Yeah. (48:40) Well, you know, I heard you say something recently, about blood pressure low blood pressure and how it could be connected to the thyroid. (48:47) So I thought you know, I I did get the doctor to write me a script for a higher dose of levothyroxine.
Scott Benner (48:53) Mhmm.
Erin (48:54) So, hopefully, my TSH will come down. (48:57) My hair will be better, and maybe my blood pressure will be better too. (49:01) Who knows?
Scott Benner (49:02) Yeah. (49:02) I don't know. (49:03) It's but it really is something, like it's interesting to watch you, like, track it a little bit. (49:09) But you said you're tired of tracking it too. (49:11) Like, when you got to the Graves thing, you're like, it's a it's a bridge too far?
Erin (49:14) Yeah. (49:14) Yeah. (49:15) And even though that diagnose I I think because that diagnosis was, it was just a little bit of an you have a sickness. (49:22) Here's a pill. (49:23) Mhmm.
Erin (49:23) You know? (49:24) I mean, I did have the radioactive iodine stuff, which was more of a procedure, and it was kind of a pain in the butt. (49:29) For the most part, for the thyroid, it's just here. (49:32) Take this pill, which is a lot easier than dealing with with diabetes.
Scott Benner (49:38) Yeah. (49:38) So So let's pivot a little bit here. (49:41) Okay? (49:41) Like, you've been through a lot. (49:43) You're doing a good job of tracking your own health and figuring things out for yourself, but it hasn't gotten you to exactly where you'd need to be.
Scott Benner (49:50) You've figured out a lot of it by listening to me talk through other problems too. (49:55) Right? (49:55) Because that is really what's going on. (49:56) Right? (49:56) Like, you you listen, and I'm like, oh, maybe it's this.
Scott Benner (49:59) Maybe it's that. (49:59) You start doing that for yourself. (50:00) You figure things out. (50:02) What what would you wanna leave in the podcast for other people? (50:05) Like, what what do you know what I mean?
Scott Benner (50:07) Like, what about this conversation do you think would end up being helpful for someone like you?
Erin (50:11) You know, I I'm
Scott Benner (50:13) It's not an easy question. (50:15) I just don't know. (50:15) Like, is there something that you can identify about the podcast that you think, like, there should be more of this right now? (50:23) Is it a is it a I mean, did you have be
Erin (50:26) get so much out of the podcast. (50:30) I can't even tell you how much I get out of it. (50:33) And I I actually found myself worrying about what would happen if you got hit by a bus because I was like, well, he's got all these episodes that aren't, like, published or whatever you call about call it. (50:45) Like, what's gonna happen to those? (50:47) Because, like, who's gonna who's gonna do all of those
Scott Benner (50:50) Oh, Aaron.
Erin (50:51) Things. (50:52) I mean, I know you're gonna be an AI bot or whatever, but if we can ask questions about diabetes to you to, like, your avatar or whatever.
Scott Benner (51:01) Can I talk to you, like, with your friends for a second?
Erin (51:03) Sure.
Scott Benner (51:03) Honey, do you go to therapy? (51:04) Are you okay?
Erin (51:05) Oh my god. (51:06) The last time I went to therapy, I actually did really like my therapist, but I did wanna talk about diabetes and how stressful it is. (51:14) And it just came she had type two. (51:16) Oh. (51:17) And I was just like she just kept telling me all about type two, and I just couldn't.
Scott Benner (51:22) Bad therapist. (51:23) I like telling you about her.
Erin (51:25) Yeah. (51:26) And and, you know, a lot of that's partly why I wanted to talk to you and come on the podcast Uh-huh. (51:30) Because I feel like you're talking to you is, like, the pinnacle of having a conversation with someone about type one who really gets it. (51:40) Like, that that need to have understanding, to have community, just to talk to anyone, someone please understand. (51:49) Yeah.
Erin (51:49) Like, that is such a strong sense that I have that that need to kind of connect, and I really don't have anyone. (51:56) I mean, I do use the Facebook group. (51:59) I'll I'll go in and Google certain issues just to see what else has been posted about it. (52:04) You know, I I I check what people are posting every now and then. (52:08) So I do appreciate that that community is there.
Erin (52:10) But where I get the most sense of it is from listening to your conversations with people through the podcast, like like we're doing now.
Scott Benner (52:17) Yeah.
Erin (52:18) Just to be able to relate. (52:20) These people get it, whether they're a parent or a person with it. (52:24) And then sometimes you'll get those extra actually, not just sometimes. (52:28) I mean, often. (52:29) Like, I'm getting things to consider about thyroid, things to consider about iron and ferritin.
Erin (52:35) Ozempic, had you not done your weight loss series? (52:38) That was you know, I'm on Ozempic. (52:41) I lost 80 pounds.
Scott Benner (52:42) Wow.
Erin (52:43) I've I've just been really influenced by the by the podcast, and I'm so thankful for it. (52:49) So I'm glad I'm getting an opportunity to tell you that in person.
Scott Benner (52:51) Oh, I'm glad for you. (52:52) That's awesome. (52:53) You lost how much weight? (52:54) 80. (52:55) In how long?
Erin (52:57) Like, a year and a half.
Scott Benner (52:58) Does does the time you've been on that and lost weight coincide with your iron going back up by any chance?
Erin (53:04) I started no. (53:06) No. (53:06) Okay. (53:06) In fact, I'm wondering
Scott Benner (53:08) If it's going
Erin (53:08) I'm wondering if, like, the blood pressure might be my my my endocrinologist suggested that it's possible that, like, my homeostasis is a little out of whack from the rapid weight loss and that my he's hoping that my blood
Scott Benner (53:23) pressure will
Erin (53:24) regulate better once I'm and I'm I'm pretty I'm holding steady at around a hundred and forty pounds, so I'm doing and I've been there for a couple of months. (53:33) Really, four or five months.
Scott Benner (53:35) So Well, that's awesome. (53:36) If you wouldn't have mentioned the, the TSH being higher, I would have thought maybe you lost weight, your medication's too strong, and maybe that's what's making your blood pressure lower.
Erin (53:45) Well and that did happen where the the Ozempic impacted my thyroid meds, and I am the one who did need to, you know, ask the doctor about that and get it get my medicine decreased. (53:57) I was on a hundred and fifty milligrams, and I ended up down to eighty eight. (54:01) And now I'm back on to a hundred to try to get that TSH down.
Scott Benner (54:05) Oh, damn. (54:05) Again. (54:06) That's good. (54:06) It sounds like your doctor's pretty flexible about the thyroid and doing a good job with you. (54:11) You're like
Erin (54:11) He's pretty flexible. (54:12) I mean, you know, I I see how much he charges for my hour that I go and see him, and it's, like, $4,800 or something like that.
Scott Benner (54:20) Really?
Erin (54:20) Oh, I'm just like, yeah. (54:22) I think it's crazy.
Scott Benner (54:23) Wait. (54:23) Yeah. (54:24) I helped you more than him? (54:26) Oh. (54:26) Why am I not charging for this podcast?
Scott Benner (54:28) How come the I the podcast cost $4,800 now to listen to. (54:32) That's it. (54:33) Everybody send it over. (54:34) Find out where my no. (54:36) I don't wanna say that.
Scott Benner (54:37) Anyway, just you figured out a way to get me the money.
Erin (54:39) Do you take UPMC Health Plan?
Scott Benner (54:42) Listen. (54:43) Maybe I maybe I should. (54:45) I don't know. (54:45) No. (54:46) I'm just teasing.
Scott Benner (54:46) That's but, yeah. (54:48) I mean, I'm just saying any any doctor who's willing to move your thyroid med around even is a pretty good doctor because a lot of them won't do it. (54:55) So Okay. (54:56) You know, like so that's pretty great that you have somebody that's listening to you and being flexible about that. (55:01) So the podcast helped you how long have you been listening to it?
Erin (55:05) Since about probably the very beginning of 2021.
Scott Benner (55:08) Wow.
Erin (55:08) I found it just a few months after I was diagnosed.
Scott Benner (55:11) How did you find it?
Erin (55:13) Well, I ended up on a diabetes Facebook page.
Scott Benner (55:17) And
Erin (55:19) I so I I joined I don't remember the name of it, but I joined a diabetes Facebook page, and it turned out it was really more for type two. (55:27) And I didn't, that point, really understand The difference. (55:30) The differences. (55:31) Yeah. (55:31) Someone in there suggested that I listen to the Juice Box podcast.
Erin (55:37) Awesome. (55:37) And and I did.
Scott Benner (55:38) Very cool for people to do that. (55:40) Yeah. (55:41) And you I guess we should talk about a little bit your diabetes.
Erin (55:44) Oh, jeez.
Scott Benner (55:45) Where's your e one c at? (55:46) What's your variability like? (55:47) What kind of gear do you use? (55:48) Do you have a pump? (55:49) That kind of stuff.
Erin (55:50) Yeah. (55:50) So I'm on the Omnipod five with the Dexcom g six. (55:55) I recently found out about the twist pump, so I'm getting that soon.
Scott Benner (56:01) Gonna try the twist?
Erin (56:03) Yeah. (56:03) Okay. (56:04) Yeah. (56:05) I'm I would because I've been thinking about looping. (56:08) It's just hard to
Scott Benner (56:10) You don't wanna get involved in that?
Erin (56:12) Well, the barrier to entry is just a little bit more than I can handle right now, just like setting it up and stuff. (56:18) It it's not that I couldn't do it. (56:19) I just don't I just don't have the mental wherewithal at the moment.
Scott Benner (56:23) I hear you.
Erin (56:24) I think When I heard about the twist, I thought You think wow. (56:27) It uses a more aggressive algorithm. (56:30) Because the Omnipod five is a little disappointing. (56:34) It's just not aggressive enough with keeping me in range.
Scott Benner (56:38) You like to be more aggressive?
Erin (56:39) It can't even handle, like, my morning, my feet on the floor. (56:42) Like, I'll shoot up to, like, one eighty. (56:45) And if I didn't eat and I just let the Omnipod five, you know, handle it on its own, it would take, you know, six hours to bring me down.
Scott Benner (56:53) Oh, no. (56:54) I don't think you're gonna get away with not bolusing with
Erin (56:56) Yeah.
Scott Benner (56:56) I I wanna be clear. (56:57) I don't think you're getting away with not bolusing with the twist either.
Erin (57:00) Yeah. (57:00) No. (57:01) But I I think it has some benefits that I'm gonna really like.
Scott Benner (57:06) I hope so. (57:06) I think the first version of Twist is based on basil, and I'm hoping that they release maybe another version of it that maybe does more microbolis thing for higher blood sugars. (57:17) It's As long as you use my link, I think that's really what matters.
Erin (57:20) Every once in a while, I just go into one of the podcast details, and I just click on all the links. (57:25) Right.
Scott Benner (57:26) Gonna buy something to wear once in while. (57:28) Thank you. (57:28) Oh. (57:29) Yeah. (57:29) That's for everybody.
Scott Benner (57:29) Please Click on the links and click on the links and buy a thing. (57:33) I don't care. (57:33) Do you need sheets or anything like that?
Erin (57:36) I did order a T shirt, but, that's not what you mean.
Scott Benner (57:39) No. (57:39) I needed cozy earth. (57:41) Cozyearth.com. (57:41) Use the off code juice box to check out to save. (57:44) I think it's don't I wanna say now.
Scott Benner (57:45) I'll be wrong. (57:46) Well, this isn't actually the ad. (57:47) I think it's maybe 40%. (57:48) Is it 40?
Erin (57:49) I do get their texts.
Scott Benner (57:51) They are persistent.
Erin (57:53) Very. (57:53) Oh my god.
Scott Benner (57:54) They want you to buy more sheets. (57:56) That's for sure.
Erin (57:56) Want me to wear their loungewear? (57:58) It does seem comfy.
Scott Benner (57:59) I have to tell you, that's not a bad decision. (58:01) I I exclusively fly in Cozy Earth clothing.
Erin (58:04) Oh, that's so funny.
Scott Benner (58:05) Anytime I get into a plane, I have a Cozy Earth sweatshirt and sweatpants on every time. (58:11) Like, it's just I don't know.
Erin (58:12) It's Well, I'm not wearing a cozy earth or getting on an airplane anytime soon because I have this $15,000 dog.
Scott Benner (58:18) No. (58:18) Yeah. (58:19) You can't afford anything. (58:20) $15,000 dog. (58:21) It's not even the dog that was worth $15.
Scott Benner (58:23) It's the that's like that's like having trees cut down. (58:26) Like, you start with an amount of money and trees, and when you end, you don't have the money or the trees.
Erin (58:31) That's so true.
Scott Benner (58:33) You have you but that's maybe the most Caucasian thing I'm gonna say today. (58:36) And then And and it's
Erin (58:38) like a and it just a metaphor of being an adult.
Scott Benner (58:41) Like Yeah. (58:41) No. (58:42) It really is. (58:42) Like, when did everything start costing a a thousand dollars? (58:46) Every every time somebody says something to you, it's like, is that how much is that?
Scott Benner (58:49) And it feels like it's always hundreds or you know what I mean? (58:52) Like, it's never like a a low it's never $20. (58:55) Nobody ever needs $20, I guess, is what I'm saying.
Erin (58:57) Oh, and it's never fun. (58:58) It's not fun to have trees cut down or get a new HVAC system.
Scott Benner (59:03) I had a guy tell me one time, like, hey. (59:05) I think you're gonna have to replace this air conditioner. (59:07) I said, yeah. (59:07) What's the He goes, it's shot. (59:08) And I was like, what's it gonna cost to replace?
Scott Benner (59:10) Goes, $7,000. (59:11) And I was like, does it work? (59:12) And he said, yeah. (59:12) I said, I'll I'll be riding it a little longer. (59:14) By the way, I've been riding it for four years.
Scott Benner (59:17) He told me, like, it has to be replaced right now. (59:19) It's not gonna make it through the summer. (59:20) I'm like, you son of a bitch. (59:22) You know he just had a bill he had to pay. (59:24) And, they talked me into replacing an air conditioner I couldn't afford to a place.
Scott Benner (59:28) Okay. (59:29) So, I mean, I I I'm going back to my question because I I I don't I don't love the answer, but I understand why you don't have one about, like, what what do you think people need to hear that's valuable for them. (59:40) So, like, what about listening to the stories gave you the, like, the motivation to just go out there and try a weight loss drug for yourself or, you know, try to get better answers from a doctor? (59:50) Like, what about this does that for you? (59:53) Do you know?
Erin (59:55) I I just think it goes back to the sense of community and whether that's on a micro level or or a macro level, like, with the Facebook page or just in general listening to the because it's more on, like, a micro level of relating to the person you're speaking to. (1:00:10) You know, the other day, I heard someone say the Omnipod five wasn't aggressive enough for me, so I I upped my insulin or my my insulin to carb ratio. (1:00:21) And I was like, you know what? (1:00:23) I couldn't mean to do that, and I did it. (1:00:25) I just did it.
Erin (1:00:25) I just took the thirty seconds that it takes, and it was listening to that person say that thing.
Scott Benner (1:00:31) Did it work?
Erin (1:00:32) It did. (1:00:33) Yeah. (1:00:33) Yes. (1:00:34) Because I've been and, you know, it's a little hard with the Ozempic because it messes with your insulin sensitivity, and it messes with it in a way that's not
Scott Benner (1:00:42) Consistent.
Erin (1:00:43) You know, it's it it makes your insulin sensitivity stronger when you first give the injection, and then it kinda peters out by the week's end. (1:00:50) Yeah. (1:00:50) So, like, you you just have to kind of it's part of that mental math that you have to do where you're considering, like, all the different variables when you're going to dose yourself. (1:01:00) So it's just another variable that I have to consider. (1:01:02) I've before I and so I'd gotten a little bit shy about bolusing because I really wanted to avoid the lows.
Erin (1:01:11) But, really, my insulin to carb ratio is not correct, and it's better now. (1:01:18) And listening to your podcast is sort of the same as, like, setting a lower target from my Dexcom on my on my app. (1:01:28) Oh, it keeps you engaged. (1:01:30) Keeps it it just keeps me more cognizant of what I'm doing. (1:01:34) Mhmm.
Erin (1:01:35) I I I have pre bolus thing on my mind a lot more. (1:01:39) When I take breaks from the podcast, I my I, you know, I swear my a one c goes up just because it's not on the top of my mind. (1:01:48) Like Yeah. (1:01:49) Like it needs to be. (1:01:50) I'm actually hoping that with the twist that I can get my settings dialed in really well so that I can think about diabetes a little bit less.
Scott Benner (1:01:59) I wish I could remember the person who said it to me so I could thank them every time this comes into my mind. (1:02:04) But, you know, I'll I'll tell this really briefly again. (1:02:08) I was interviewing this person, I think, her late twenties, and she was telling me, like, being really effusive about how much the podcast helped her. (1:02:15) And I was it was years ago, I think. (1:02:17) I just leapt to the idea, like, oh, I must have explained to her how to bolus or something like that.
Scott Benner (1:02:21) Right? (1:02:21) And I so I started saying, like, oh, what helped you? (1:02:24) Was it the pro tips or the buy and she goes, no. (1:02:26) I knew how to do all that. (1:02:27) And I was like, oh, I don't understand how the podcast helped then.
Scott Benner (1:02:30) And that's what she said. (1:02:31) She said that it somehow keeps her connected to her health without making it feel front of mind so she doesn't feel like she's always thinking about diabetes, but yet somehow she is, and she's doing better for herself almost not on purpose or unknowingly.
Erin (1:02:46) And Right. (1:02:46) Exactly.
Scott Benner (1:02:47) That is what you just said too. (1:02:48) Okay.
Erin (1:02:49) Right. (1:02:49) And even in the beginning, I remember calling the endocrinologist after listening to the podcast for a couple of months, and I said, I didn't know that I could correct a high blood sugar. (1:03:01) I didn't. (1:03:01) Oh. (1:03:02) He put me on a sliding scale.
Erin (1:03:04) He put me on enough basil to, like, kill me. (1:03:07) I had I tapered down to get to the right dose. (1:03:10) I'm glad that occurred to me. (1:03:12) I just didn't it didn't even occur to me that I could correct a high blood sugar. (1:03:15) I and I I feel so stupid saying that, but it's true.
Erin (1:03:19) I just didn't know. (1:03:20) I did I and the the nurse practitioner just she said, well, we can't really tell you everything all at the same you know, all upfront.
Scott Benner (1:03:32) You could've mentioned that.
Erin (1:03:33) Yeah. (1:03:33) I mean, I thought that was a pretty basic thing to share. (1:03:36) But it's been that way. (1:03:37) I mean, I've learned so much about all of the different kinds of pumps, about I love when you have the experts on.
Scott Benner (1:03:43) Mhmm.
Erin (1:03:43) Doctor Blevins, I I love listening to him. (1:03:46) I think he's so fantastic. (1:03:48) I love Jenny and Erica. (1:03:51) I'm and and and then the regular conversations that you're having with regular people too, they're just fascinating. (1:03:57) Just love it.
Scott Benner (1:03:58) I'm glad.
Erin (1:03:59) So but even, like, hearing about back in the beginning, I had a really strong honeymoon period, and I I used diluted insulin. (1:04:08) And I set I, you know, I set all of that up for myself, and I'd heard heard about it through through the podcast.
Scott Benner (1:04:14) That's awesome. (1:04:15) Oh, I can't tell you how happy I am to hear that. (1:04:17) Thank you for sharing that. (1:04:18) I really do appreciate it. (1:04:20) I I swear to you, I mean, it's been a long time now, so it's not that I don't have, like, a cognitive understanding of it, but I'm not doing it on purpose.
Scott Benner (1:04:29) Like like, I I I'm glad it's helping you, but if you think I sat down and I thought, let me do this, this, this, and this so that Aaron does better. (1:04:36) Like, it's not I just I think there's something about the mix of how it occurs to me to make this thing that works for some people.
Erin (1:04:43) You're very good at what you do.
Scott Benner (1:04:44) No. (1:04:44) It's not. (1:04:45) I don't know what it is I do, though. (1:04:47) I I just know that the I think there's some basic ideas that people need to have, and when they have them, they do better. (1:04:53) It just and you have to keep saying you have to be willing to continue to say I did a talk on Saturday afternoon.
Scott Benner (1:05:00) It was, an hour and fifteen minutes for a camp in Georgia. (1:05:03) And I there was a a big group of parents in the room, like, isn't you know? (1:05:07) And and I sat there and I thought, like, I I've given this talk so many different times. (1:05:12) I don't know that I couldn't say it with my eyes closed, but I did it because I know that's another 40 families that get off in the right direction. (1:05:21) You know?
Scott Benner (1:05:22) And then they've got a chance, and their kids have a chance, and they have an opportunity to learn more stuff or to see some a b testing workout in a way that makes them think, like, well, I should look further into this, or let me keep doing this thing that works. (1:05:35) Or I wonder if this works. (1:05:36) What the hell else might help? (1:05:37) You know? (1:05:38) And and I I don't know.
Scott Benner (1:05:40) I just I sat there and I thought, like, the it would be easy to make fun of me and say, like, oh, there's that talk he gives people all the time. (1:05:47) And I just think it's I think people need to keep saying it. (1:05:51) So I
Erin (1:05:52) Absolutely. (1:05:53) Reach more and
Scott Benner (1:05:53) more people.
Erin (1:05:54) Yeah. (1:05:54) Unfortunately, we keep having people diagnosed with this, and I feel like I mean, you're so well, you're good at what you do, but I also feel like you're very lucky that you have a purpose driven life. (1:06:06) I think that's admirable and enviable that that you that the work you do is so meaningfully impacting people.
Scott Benner (1:06:14) Thank you. (1:06:15) I I feel that way as well. (1:06:16) I am very, lucky to not get up in the morning and just do a thing because somebody pays me for it. (1:06:23) You know? (1:06:24) Like, it it is good to feel the way you're describing.
Scott Benner (1:06:27) I did some stuff over the weekend. (1:06:29) I'm just trying to pull ideas together for you guys for later, and I I have to admit, like, it felt that lucky is the right word. (1:06:36) Like, I was standing there. (1:06:37) It was it was the weekend, but I was still like, I had my laptop out, and I was kinda noodling around with ideas. (1:06:41) And and I was like, oh, this will probably be a good thing for us to do next year.
Scott Benner (1:06:45) I can see how this might help people. (1:06:46) And and it's it's an interesting decision because you have to do new enough that the podcast is still new, but core enough that it still does the thing it's supposed to do. (1:06:59) Like right? (1:07:00) So it's and then you I don't know. (1:07:02) That's more of the management stuff and the ideas and the directions we talk about things, and then you gotta keep digging and having conversations with people so that you can have these conversations like this.
Scott Benner (1:07:11) It's a No. (1:07:12) And I think
Erin (1:07:12) it's a perfect mix.
Scott Benner (1:07:13) Yeah. (1:07:14) You
Erin (1:07:14) try to have something management style in there and
Scott Benner (1:07:17) It's a lot. (1:07:18) It can be a lot if it's too much. (1:07:20) You know what I mean? (1:07:21) Yeah. (1:07:21) And, again, you you want enough, but it can't be the whole thing
Erin (1:07:24) at all. (1:07:24) I think you're right. (1:07:25) And that's why people keep coming back because it would it would be very boring if we were just, like if you were just getting on and then you were a talking head about what about anything, really, but especially about diabetes management. (1:07:39) I mean, what could be more boring
Scott Benner (1:07:40) than that? (1:07:41) I know.
Erin (1:07:41) Right? (1:07:42) That people learn through storytelling, for sure.
Scott Benner (1:07:45) I think the same thing. (1:07:46) Oh my god. (1:07:46) If this was just content like that altogether, I'd be like, ugh. (1:07:50) Like, just I would do anything not to listen to it. (1:07:52) You you know?
Erin (1:07:53) But I have to tell I I think it was one of your real early episodes, and I think you already know this, but it's about, like, get achieving a steady low blood not low, but healthy blood sugar overnight
Scott Benner (1:08:03) Mhmm.
Erin (1:08:04) Back in the very beginning. (1:08:05) And I just that was, like, really eye opening for me. (1:08:09) And I think that's what kept me coming back was that particular episode.
Scott Benner (1:08:14) Something was helpful and made sense and worked. (1:08:16) Mhmm. (1:08:17) Yeah. (1:08:17) No. (1:08:17) I go ahead.
Scott Benner (1:08:18) I did listen to that. (1:08:19) I'll tell you right now. (1:08:19) I did the whole talk on Saturday just from the bones of the small sip series.
Erin (1:08:24) Oh, yeah. (1:08:25) I just that.
Scott Benner (1:08:26) Yeah. (1:08:26) I just literally just followed those however many it is, like
Erin (1:08:30) And the nutrition ones, and I feel like I I think of Jenny every time I pour myself a gigantic bowl of cereal. (1:08:36) Like, don't do this.
Scott Benner (1:08:38) I've had thoughts where I've done something and I thought, oh, Jenny would be mad if I'd if she sold this. (1:08:43) And she wouldn't, by the way. (1:08:44) She's not judgmental. (1:08:45) She wouldn't be mad. (1:08:46) She'd you know, she'd be disappointed.
Erin (1:08:48) She wouldn't do it herself.
Scott Benner (1:08:50) Yeah. (1:08:50) No. (1:08:51) You you know, you're right. (1:08:52) Again, she wouldn't be disappointed in you. (1:08:54) She would is not a thing she would do.
Scott Benner (1:08:56) Like, it is a what would Jenny do situation because Jenny would not eat that. (1:08:59) And and it's you know, like, if you use her as the barometer on the one side and you come anywhere near her way of eating, I think that ends up being, you know, healthier for the for the person who's thinking that way. (1:09:10) So she'd be thrilled to know that you're that you're that she's your she's your, little guilt idol when you're making cereal.
Erin (1:09:17) Yeah. (1:09:17) The little angel on my shoulder.
Scott Benner (1:09:19) Yeah. (1:09:19) Hopefully. (1:09:19) Right? (1:09:20) Oh, that's awesome.
Erin (1:09:20) And I do have a better answer for you, I think
Scott Benner (1:09:22) Go ahead.
Erin (1:09:23) About about what what I could give that that that you know, similar to the kind of thing that I've received. (1:09:30) Like, what can people listening get from me? (1:09:33) And even though it sort of might seem like we just went through, like, a whack a mole, like, list of all of my health conditions, what I ended up doing after I got the diabetes diagnosis, after I'd been to see so many doctors, is I do you did you watch Game of Thrones?
Scott Benner (1:09:53) I listen. (1:09:54) I did, but I wanted you to know that I don't remember anybody's name or much of the story.
Erin (1:09:58) Well, the there's a character, Arya. (1:10:01) She's like the little girl
Scott Benner (1:10:02) With the the stabby girl. (1:10:04) She's the stabby girl.
Erin (1:10:05) She makes a list.
Scott Benner (1:10:07) Uh-oh.
Erin (1:10:07) And I was like, I am like, Aria. (1:10:10) I am making a list, and I'm going around. (1:10:13) And I did. (1:10:13) I went around to each one of those practitioners, and I told them exactly what they did that wronged me. (1:10:21) So, no, I didn't kill them.
Scott Benner (1:10:22) You didn't stab them with a small knife?
Erin (1:10:24) But but I did. (1:10:25) I went, and I was like, this is the way this is what happened. (1:10:28) And I wanted to let you know that this was my experience and that, you know, it had a negative impact on my health. (1:10:35) And then I went for six months with a really high a one c, and I ended up in a hospital for a week. (1:10:41) And it I wanted you to know.
Erin (1:10:43) And each of them had their reaction, and now I have a new PCP, a new endocrinologist, a new eye doctor. (1:10:50) So I made my list, and I I went I, you know, I didn't wanna just ghost them. (1:10:55) Mhmm. (1:10:56) I wanted to tell them what happened.
Scott Benner (1:10:58) Were any of them contrite or apologetic, or do you feel like it helped them?
Erin (1:11:02) Yeah. (1:11:03) I they they really were. (1:11:05) They all reacted like you would hope that a human being would. (1:11:09) They apologized, and but I was still done with them. (1:11:13) I thought maybe if they reacted in a way that I approved of, that I would continue seeing them, but that apparently wasn't the case.
Erin (1:11:20) I just thought
Scott Benner (1:11:21) It felt did it feel like they cheated on you? (1:11:23) Well Or on your on your on your cheat on your your trust?
Erin (1:11:28) Yeah. (1:11:28) I mean, they definitely did. (1:11:30) And, you know, the PCP, even after all of the stuff with the diabetes, I called her and said, hey. (1:11:36) I'm having these crazy heavy periods. (1:11:38) And she was like, oh, that's that's perimenopause.
Erin (1:11:41) And meanwhile, it ends up with me becoming, you know, low iron, low ferritin, and feeling like I was gonna die and another hospitalization. (1:11:49) So I just you know, you you and I think everyone who listens to the podcast already knows this, but you you do have to advocate for yourself, and sometimes that means finding a new provider.
Scott Benner (1:12:02) Yeah.
Erin (1:12:02) I know that seems like a small thing. (1:12:04) It might be obvious, but you don't have to continue going back to someone who makes you feel stupid or unheard or unseen Mhmm. (1:12:12) Or and is impatient with you, you don't have to do that. (1:12:15) There are nice people out there too who are practitioners.
Scott Benner (1:12:18) Well, I appreciate that. (1:12:19) Can I try real hard to do something that I know won't work? (1:12:22) But I just every time I look at my wife, I I went so badly for this to be the answer. (1:12:26) Can I try it on you?
Erin (1:12:27) Okay.
Scott Benner (1:12:29) Please calm down. (1:12:30) Thank you. (1:12:32) Just relax. (1:12:33) Can you just relax and chill out? (1:12:35) Is that a possibility or no?
Erin (1:12:37) I'm sorry. (1:12:38) Did you just tell me to calm down? (1:12:42) How dare you?
Scott Benner (1:12:44) Did it not work? (1:12:45) Did it not work, Aaron? (1:12:46) I'm sorry. (1:12:47) I tried my hardest. (1:12:49) Oh my gosh.
Scott Benner (1:12:50) I do wonder why why, like, like, that kind
Erin (1:12:53) of Is it the list? (1:12:54) What was it?
Scott Benner (1:12:55) Well, yeah. (1:12:55) I made a list, and I went around and I went and made a list of everyone that wronged me, and I spent three years making sure they all knew. (1:13:02) My heart's exploded twice. (1:13:04) And
Erin (1:13:05) There's smoke coming out of
Scott Benner (1:13:06) my ears. (1:13:06) There's smoke. (1:13:07) Oh, yes. (1:13:07) I'm I'm literally my brain is on fire. (1:13:09) I'm I'm just I can't tell you how angry I am about everything.
Erin (1:13:14) Oh my god. (1:13:15) Did I mention I'm Irish?
Scott Benner (1:13:16) It's awesome.
Erin (1:13:18) Oh my gosh. (1:13:18) Yes. (1:13:19) Which actually reminds me of, yeah, the episode that you did with someone kept saying she was Irish Catholic. (1:13:26) You're like, yeah. (1:13:27) I know.
Scott Benner (1:13:27) Know. (1:13:27) I can hear it. (1:13:28) Yeah. (1:13:29) Yeah. (1:13:29) Everything you said has told me that already.
Scott Benner (1:13:31) How did your what what happened to your husband? (1:13:33) Did he did he get thrown out of the tribe and he had to go get an Irish girl, or what happened?
Erin (1:13:38) I mean, he's always said that I've looked Jewish. (1:13:42) So he thought I would fit right in, but, yeah, he's he was raised in Maryland, very Jewish Mhmm. (1:13:48) Family involved with know, we had a bar mitzvah and everything, and we we ended up raising the kids Jewish, and I'm down with it.
Scott Benner (1:13:57) Yeah. (1:13:57) You know? (1:13:58) Do you have, like, little red haired Jewish boys, or is it not that
Erin (1:14:01) No. (1:14:02) They have, like, light brown hair, and they are I don't know how the two of us ended up with such good looking kids, but we did.
Scott Benner (1:14:10) Sorry. (1:14:10) You're so listen. (1:14:12) I'm not gonna lie to you. (1:14:13) There are times when my kids were growing up, and they were, like, you know, running across a giant piece of ground and catching something, and I was like, oh, those are definitely not my kids. (1:14:22) Like, I'd look at my wife like she 100% cheated on me.
Scott Benner (1:14:25) And I, you know, I'd, like, look to see if the mailman looked super athletic or something like that. (1:14:29) And but she said she always felt the same way too.
Erin (1:14:32) Yeah. (1:14:32) That's amazing.
Scott Benner (1:14:33) Yeah. (1:14:34) I I I have to I I this will sound terrible too, but my kids are also more attractive than they should be.
Erin (1:14:40) That's what I'm saying, man.
Scott Benner (1:14:43) I'm like, I don't know why you guys got so lucky.
Erin (1:14:46) I know. (1:14:47) My older son is like he's like a physical specimen too. (1:14:50) He does power lifting, and he's just really into, like, protein, etcetera. (1:14:55) He's kind of a gym bro.
Scott Benner (1:14:56) He just, like, had it to the staff. (1:14:58) And yeah. (1:14:58) No. (1:14:59) I know. (1:14:59) I stared at that rowing machine for thirty minutes this morning before I decided not to row.
Scott Benner (1:15:03) So I could have done it twice in the amount of I only wanted to come on for fifteen minutes. (1:15:08) Like, I literally could have done it twice the amount of time that it took me to
Erin (1:15:11) If you can't multitask.
Scott Benner (1:15:12) Yeah. (1:15:12) I think I'd be a horrible test. (1:15:14) Yeah. (1:15:14) I think I'd be a horrible day trader. (1:15:15) You know what I mean?
Scott Benner (1:15:16) Like, I'd like, think I just have to jump in here and jump out there, and I'd like, and I would stare at it till it was over. (1:15:21) So, nevertheless, you were fantastic. (1:15:24) I really do appreciate you doing this. (1:15:26) Thank you. (1:15:26) We are a 100% calling this episode some oh, you know what we should do?
Scott Benner (1:15:30) I said we should call it gesundheit, but, like, what's the Yiddish term for Sundheit?
Erin (1:15:39) So you do know more Yiddish than me Well I do think.
Scott Benner (1:15:42) Yeah. (1:15:42) Well, where did you grow up?
Erin (1:15:44) Pittsburgh.
Scott Benner (1:15:45) Yeah. (1:15:45) It's a little too west for you to get what I got. (1:15:49) So, I guess that you know what? (1:15:52) If I make it that, no one's gonna listen. (1:15:54) I might go with.
Erin (1:15:55) We're just I don't know.
Scott Benner (1:15:59) I well, I listen. (1:16:00) I wish you a ton of success. (1:16:01) I'm proud of you for, like, looking into all of your your elements and and coming up with so many answers. (1:16:06) It really is impressive. (1:16:08) I hope you find some energy and go after your Graves thing and and and see about that.
Scott Benner (1:16:14) You know, good luck getting your fireturn up a little higher. (1:16:17) I think that would definitely probably help you a little bit. (1:16:20) When's the last time you had a, an infusion?
Erin (1:16:23) It was last last year. (1:16:25) I think towards the end of the year. (1:16:27) So it's, yeah. (1:16:28) It's been about a year, I think.
Scott Benner (1:16:30) And I would imagine if they checked it before and after. (1:16:33) Right?
Erin (1:16:33) They did, and I have my appointment coming up in March. (1:16:37) So
Scott Benner (1:16:38) So if it's still going back down Mhmm. (1:16:40) Then you need to figure out why, obviously. (1:16:43) But if you can't figure out why, then you need to get you need to get on a schedule. (1:16:46) Because if it's gonna go up and then come down naturally, I'm gonna use the word naturally, then you need to get an infusion before you bottom out.
Erin (1:16:54) Yeah.
Scott Benner (1:16:55) Yeah.
Erin (1:16:55) And I I think that with getting checked every three months, I I think that might I think I'll catch it.
Scott Benner (1:17:01) Yeah. (1:17:01) Yeah.
Erin (1:17:02) And then I'll see him in March, and it'll be
Scott Benner (1:17:04) Do it again.
Erin (1:17:05) Good. (1:17:05) I'm gonna retest in January.
Scott Benner (1:17:07) Awesome.
Erin (1:17:08) And then he'll test me again when I go in for the March appointment. (1:17:10) If it's low in January, I'll call him
Scott Benner (1:17:13) Yeah.
Erin (1:17:13) Or send a message or whatever.
Scott Benner (1:17:15) Well, the next time someone in my life doesn't listen to me, which should be in the next thirty five minutes, I assume, I'm gonna say, you know, Erin listened, and she's doing better. (1:17:23) You guys you guys could try listening.
Erin (1:17:25) They're gonna be like, who the fuck is Erin?
Scott Benner (1:17:27) Well, that's their problem. (1:17:28) They should
Erin (1:17:28) know you. (1:17:29) Have of your stupid
Scott Benner (1:17:30) Oh, I guess. (1:17:31) Is that one of the podcast people? (1:17:32) Yeah. (1:17:32) The podcast people. (1:17:33) That's my son's phrase, podcast people.
Scott Benner (1:17:35) One of these podcast people is gonna murder you one day. (1:17:37) That's his favorite thing. (1:17:39) And we did we did have this we we we did all go on vacation re not not recently, this summer. (1:17:45) We went away for a week, and we were all walking, like I don't know. (1:17:49) We were, like, walking through a town, and we got to a traffic light.
Scott Benner (1:17:52) We're waiting at the light to cross, And someone yells our name out, and we are, like, across the country. (1:17:58) You
Erin (1:17:58) know? (1:17:58) Wow.
Scott Benner (1:17:58) And it just turned out to be people who literally live two blocks from here who were on vacation at the same time.
Erin (1:18:03) Oh, that's funny.
Scott Benner (1:18:04) Which is bizarre enough. (1:18:05) But as, like, you know, we had our pleasantries. (1:18:07) It was really cool to see them. (1:18:08) We said hi for a little bit. (1:18:09) We walk away, and we get across the street, and Cole goes, I a 100% thought that was one of your podcast people.
Scott Benner (1:18:15) And Yeah. (1:18:15) When the we were dead. (1:18:16) He's like, I literally felt myself making a fist. (1:18:19) And I was like, what did you think? (1:18:20) I said, what do think's gonna happen?
Scott Benner (1:18:21) I they're lovely people. (1:18:22) And he goes, till they're not.
Erin (1:18:24) I mean, I'm telling you, going on a cruise, that's like you're setting yourself up for
Scott Benner (1:18:29) a No.
Erin (1:18:30) Everybody was so awesome. (1:18:31) But it's a murder mystery.
Scott Benner (1:18:32) Yeah. (1:18:33) Every yeah. (1:18:33) It'll be only murderers in the building, on a boat. (1:18:36) But, no, everyone boy, everyone on that cruise was so lovely. (1:18:39) Like, it's funny when you brought it up just now, it made me think, like, oh, I can't wait for the next time we do it.
Scott Benner (1:18:45) Gonna be it's gonna be awesome. (1:18:46) I had such a such a wonderful time with all of them. (1:18:49) I hope that they did as well. (1:18:51) But I actually, I know they did, but that's not the point. (1:18:53) The point is is, like, it was lovely.
Scott Benner (1:18:55) Like, it it really was lovely to be around people. (1:18:58) I couldn't could, with a 100% honesty, tell you that there was not one person on that cruise with me that I looked at and thought, oh god.
Erin (1:19:06) Nobody gave you the creeps.
Scott Benner (1:19:07) No. (1:19:07) I yeah. (1:19:07) Like, I did and everyone was just really wonderful. (1:19:10) It was awesome. (1:19:11) So,
Erin (1:19:11) anyway No. (1:19:12) It does it does sound it's what an opportunity for for you and for the and for the attendees. (1:19:18) That would be that would be really neat.
Scott Benner (1:19:21) Listen. (1:19:21) Also, tell your husband I said you're welcome because it sounds like I've done a lot of things that he's benefiting from as well. (1:19:31) Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. (1:19:38) I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. (1:19:46) The podcast episode that you just enjoyed was sponsored by Eversense CGM.
Scott Benner (1:19:51) They make the Eversense three sixty five. (1:19:54) That thing lasts a whole year. (1:19:56) One insertion. (1:19:57) Every year? (1:19:58) Come on.
Scott Benner (1:19:59) You probably feel like I'm messing with you, but I'm not. (1:20:01) Ever since cgm.com/juicebox. (1:20:06) The conversation you just heard was sponsored by Touched by Type One. (1:20:10) Check them out, please, at touchedbytype1.org on Instagram and Facebook. (1:20:15) You're gonna love them.
Scott Benner (1:20:16) I love them. (1:20:17) They're helping so many people at touchedbytype1.org. (1:20:22) I created the diabetes variable series because I know that in type one diabetes management, the little things aren't that little, and they really add up. (1:20:30) In this series, we'll break down everyday factors like stress, sleep, exercise, and those other variables that impact your day more than you might think. (1:20:38) Jenny Smith and I are gonna get straight to the point with practical advice that you can trust.
Scott Benner (1:20:43) So check out the diabetes variable series in your podcast player or at juiceboxpodcast.com.
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