#542 Type 1 and Multiple Myeloma
Scott Benner
Susan has had TD1 for 34 years. She also has multiple myeloma, a blood cancer, for 10 years.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to Episode 542 of the Juicebox Podcast.
It's often said but worth repeating. People come on this podcast and share very intimate details about their life and their health. And we're all better for it. I just sometimes can't even imagine where they get the strength to do it. And with that in mind today, I bring you Susan, who has type one diabetes and cancer. Susan's story is rather phenomenal, full of Rocky roads, and a lot of hope. Please remember, while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. If you've heard a lot about the diabetes pro tip episodes from the Juicebox Podcast and you're wondering where they are, they begin at Episode 210 in your podcast player, where you can find an entire list of them at Juicebox Podcast calm or diabetes pro tip.com. Okay, sadolin this is Susan.
Today's episode of The Juicebox Podcast is sponsored by the Omni pod dash. And the Omni pod promise, which I'll tell you about a little bit. But if you want to find out if you're eligible for a free 30 day trial of the Omni pod dash, head now to omnipod.com. forward slash juice box to find out. The podcast is also sponsored by the good people at touched by type one. And you can learn more about them on their Facebook page, their Instagram page, and it touched by type one.org.
Susan Gimilaro 2:05
I'm Susan Gimilaro. I live in New Hampshire. And I've had Type One Diabetes for 34 years. So Susan, I'm gonna ask you
Scott Benner 2:15
to stop because it sounds like someone's getting out a pan to make eggs with behind you that hold on. Okay, did you meet somebody? Did you just go in the other room? And I did. I did. Introduce Okay, so let me try this again. Tell me your name again.
Susan Gimilaro 2:36
Okay, so my name is Susan Gimilaro. And I live in New Hampshire. I've had Type One Diabetes for 34 years, I was first diagnosed as gestational diabetes with a blood sugar of 350. And after birth, my diabetes seemed to disappear for three months. And then came back full force
Scott Benner 3:03
was that. Can I ask Was that your first pregnancy or another? No, that was my first pregnancy. How old were you then? I was 2727. Wow. All right. How many kids do you have total?
Susan Gimilaro 3:16
I have two kids. So I was fully diabetic for my second pregnancy.
Scott Benner 3:23
Fully diabetic. I like that term. So you just you had gestational. And then they tell you Oh to go away after your pregnancy is over. And for three months. You thought they were right. And then they weren't. They weren't hot. We're not calling back with a vengeance. And that's what I want to know about. What What did it look like when it came back?
Susan Gimilaro 3:47
Well, it was funny. I was feeling okay. But then I was out with my sister and I looked up to read a sign in was completely blurry. And I thought that's my, that's diabetes. I'm sure that's diabetes. And sure enough, it was
Scott Benner 4:05
presented that way during pregnancy as well. It did. Yeah. That's a with a three month old baby. Was it heartbreaking?
Susan Gimilaro 4:14
You know, um, I guess I had never had that attitude. Scott. It's been more of these are the cards I'm dealt. So let's play.
Scott Benner 4:24
Yeah. Let's play like that. Okay, so, wow, 34 years ago. I don't even want to try to do the math. I think it'll make me sound silly. But give me a second anyway. Is that the 80s? That was 1987. Look at me. I was gonna say 1980s went with my gut. And that means I'm 62 Ah, there we go. You listen to this podcast.
Susan Gimilaro 4:52
I do. So I had started listening to the podcast I had just come upon it and started listening to it and and that's when I reached out to you to ask if you had ever met someone who had both diabetes and cancer. And because I had not. I had met people with type two diabetes, but but no one with type one.
Scott Benner 5:18
Well, yeah, I was gonna say your, as I was thinking about you getting ready to get this going this morning, I thought, jeez, I'm usually just so like, you're the only person I've ever felt like, I'm sorry that you had to come on the show because it means that you have this, you know, mixture of illnesses that that I don't hear about very often, honestly, not that it doesn't happen. And I'm sure we'll hear from more people that it does, but so let's dig into the diabetes a little bit. And then we'll we'll kind of come full circle at some point. What What did diabetes management look like in 1987?
Susan Gimilaro 5:55
Well, I was on one injection a day and I think it was Lantus. That was it.
Scott Benner 6:05
They just started you with a slow acting. And that's right about the time those things started becoming more popular too. So right. So how and you weren't doing meal insulin injections.
Susan Gimilaro 6:16
I was doing insulin injections. Yes. Just one a day.
Scott Benner 6:21
Right. But not for meals. You were just doing like a background in sauna basil. Just background. Yeah. How long did that last until you had to start shooting for food?
Susan Gimilaro 6:31
Okay, only a couple of years? Only a couple of years. And then I started using regular I think it was back then.
Scott Benner 6:40
No kidding. Isn't it interesting how something can be such a big part of your current life? And with some perspective, standing back 30 some years, you're like, I don't really know, like you don't even like it. I seriously think there's a lesson in that. Not so much. It's not funny that you don't know it's not it's not even expected. I don't I mean, I go back 30 years of my life, you start asking me questions. I don't know the answers to anything either. It's more of an indictment of how maybe unnecessarily? Seriously, we treat everything in the moment. You don't I mean, everything seems so important in the moment. And then you look back on it, you go I don't know, like I took some insulin I don't even remember. But back then it was probably a little more on the president your life. I don't know if that makes sense or not.
Susan Gimilaro 7:31
Yeah, it does make sense. And for me, part of it was that I was determined that diabetes would be part of my life, but would not be my life. And so I i certainly kept track of everything. And initially it was high priority until I became accustomed to giving injections and and back then, of course, it was the three meals a day, two snacks a day. Make sure you have your bedtime snack and make sure you eat right on time. Yeah.
Unknown Speaker 8:08
So that was the regimen I followed. So is it possible then you were using regular and mph and not Lantus? It may have been NPH. Yeah,
Scott Benner 8:18
it's balmy, I think for timing wise. And for the way you're describing using the insulin. I don't think it would have been Lantus. First I think I wonder when lantis was ready. We're going to do the internet during a podcast. People love that.
When was Lantus invented, ah, Lantus was developed by Sanofi in the year 2000. Okay, so I was on NPH then I think this is kind of fascinating. That is fascinating. Yeah. I just think it's like when you said that I thought, well, that can't be right. Because my friend Mike was diagnosed around that time and he was regular on mph for a long time. And you know, a little on him. He didn't switch when faster acting insulins came up, but it's crazy as we're sitting here today, and I'm sure younger people don't understand what I'm saying. It is insane to me that the year 2000 was 21 years ago. I know you know, like it's it's mind boggling really. Like I saw that I thought oh that was recently and it's not myself true. Yeah, that's great. Okay, so you start regular an MPH likely do that for a I guess a while Do you eventually switch to a basil and and mealtime insulin method and was that still injections for you? Or did you ever go to a pump?
Susan Gimilaro 9:49
It was still injections for me for a long time and through my second pregnancy. I which was five years after the first so 1992 I by Ben. Let's see what was I on then? I had to have been on multiple injections then. And I was in very tight control. Okay, during that pregnancy,
Scott Benner 10:14
what did that look like back then? What did they call tight during your second pregnancy?
Susan Gimilaro 10:19
They call tight being right around AD. And, and they were actually not very happy with that and said it was too tight of a control and that, you know, there was a chance that my blood sugar would go low. I wouldn't, I wouldn't feel it. And so they asked me to boost up to like 110.
Scott Benner 10:40
Isn't it funny the other night are doing better blood sugar was 78. I was like, Oh, it's perfect.
Susan Gimilaro 10:46
Yeah, great changes. I know everything changes. And it's interesting, because someone said to me, why are you listening to that podcast? You've had diabetes for 3040 years, you know, what is there to learn? And I just laughed. There's so much still to learn
Scott Benner 11:05
plenty. And it's always changing. And it is, yeah, I, well, I want to whoever told you that, please tell them stop it. I have a life over here too. I'm trying to accomplish things don't don't, you know, heartless for me to find a person to get them to be a listener. Now, like, You're telling me, I got somebody behind the scenes like you don't need to listen. I know, he's cut me a break. Imagine if you were like sitting around watching CSI and someone came up behind you is like, don't watch this. The guy who made CSI would be like, Hey, I totally send my kids to college. What do you do? That's right. So funny. But no, I take your point. There's, it's and I and I love your point, especially man, I say at your age, because it this thing is always going to keep morphing. And I realize there'll be a moment when you don't you don't go with it anymore. Right? And that'll be my expectation is that age, like at some point, you just get to a point where you're like, you know, I don't care what the kids are reading the newspapers on, I get the new york times on paper, like you don't I mean, like at some point, you'll need to hit that spot. But you don't want that to happen when you're in your 40s or your 50s or your you need to keep your 60s. Yeah, you need to keep moving with it. Because I mean, look at what's next algorithm pumps, right? Let me know. Now and I'm imagining you've thought about what that would mean for you. And you're in even your 70s and beyond.
Susan Gimilaro 12:27
Oh, sure. Yeah. Well, I've had two pumps now. And right now I am on the T slim with control IQ. And prior to that I was on the Medtronic pump. Okay, CGM is with both of them.
Scott Benner 12:44
Did you use the 670 G or just were you? It wasn't automated with the Medtronic. How long ago was that? that'll probably answer the question. Oh, that was probably 15 years ago. Yeah. Okay, that's 670 G's so much nowhere, even though it was it's kind of the first algorithm pump. It's it hasn't been that long ago. So you've used one pump. Along with the CGM, with the CGM from Medtronic, did you use the one that people used to refer to as the harpoon? Yes, that was the one. That's how you want your medical devices described to you, right?
Susan Gimilaro 13:23
Oh, that one hurt that really hurt. So I had that for quite some time. And and once we get into the cancer part of the story, I'll tell you what happened. What when I would that CGM Well,
Scott Benner 13:39
okay, let's not happy that was not happy. Yeah. Now, you wouldn't be the only one that's ever said that to me. Um, so. Right. So now you're using control like you right now. You're using an algorithm? I am. Wow. Yeah. With a Dexcom g six. Yes. Yeah. Is it? Is it? What's the question here? You've been? I am not. Just keep in mind as we're talking. I'm not I'm not commenting on your age. It's just you have a different scope and makes it interesting for me to talk about. So yes, that's fine. Yeah. Do you feel like you gotten a rocket ship and went to another planet when you see that? Or?
Susan Gimilaro 14:14
Oh, it's amazing. It's really amazing. It has really changed my diabetes care and my ability to engage more fully in exercising and hiking and just being out and about it's it's been a real blessing for me, it's really been such an improvement in my life. It I have to say, it has taken me a bit to to understand it, to learn about it to get my settings in the correct place. And I have to say I was listening to this podcast that I realized I was having a problem with my basil. And it wasn't my Bolus wasn't my carb ratio, it was my basil. And so thank you for that. And, and since then my, my diabetes has been much better, my control has been much better.
Scott Benner 15:11
That's amazing. Well, so I want you to say a little more about this because earlier, you said, you know, you made a decision early on the diabetes, you know, wasn't going to be your life. But in truth, it sounds like it was limiting some things for you.
Susan Gimilaro 15:28
It was, you know, back in those early days, I'm understanding my blood sugar. And particularly if I was out hiking, it was a real challenge for me. And, you know, I would be like, the the pack meal because I would have so much food in my, my backpack, so much juice in my backpack. And it was, yeah, I had a lot of food and juice with me everywhere I went. And it it did control a part of my life. And, and even in the early days, I didn't tell many people that I have diabetes, you know, it felt like a stigma. And it took me a while to be able to talk openly about it. Without people having pity for me.
Scott Benner 16:24
Do you think they pitted, you ready to just felt like pity do? It felt like pity? Yeah, to me? It really did. I, you try to put yourself in a perspective of now today, where you still meet some if you meet someone who doesn't live around diabetes, they don't understand it in any meaningful way. And this used to come up a lot more on the podcast, I understand that. And I always used to use as the example like, I don't have any perspective on cancer. If you started talking about it, I wouldn't know the first thing about it. I would sound like an idiot if I tried to expound on it. You know, like that kind of thing. But going back 30 some years and saying diabetes, and you're a person your 30s, then right. Right, then that probably be at that probably would have turned you into the lady on the street. We crossed the street when we see her coming, because we don't want to catch diabetes from her, you would think that would be the vibe.
Susan Gimilaro 17:15
Right? And it would be you know, Susan can eat that. So let's not put this in front of her or Susan better not have that. So, so let's not bring that to this party. And and can we even invite her out for dinner because we don't know what she has to eat? And of course, she has to eat at a specific time. And that doesn't seem like a good time for us. was complicated.
Scott Benner 17:37
Yeah, no kidding. It's complicated. And I mean, how long does it take to get to dinner and the Studebaker probably pretty I'm just kidding. That's the 50. That that's, that's really something that I've thought of thought about intellectually, but never heard anybody say out loud before. And I get what you're saying that you might keep it to yourself, but different world now you're saying it's complete? Yes. Yeah. How much of management being different changes how you interact with people like because that's the only real thing. It's changed besides your perspective and having it for a while. But if you were still, if insulin had never progressed, if technology didn't exist, and you were still like regular an MPH right now or or, you know, even you know, shooting, you know, Lantus and guessing at your meals and testing the hope, where you fall in line, you might still feel like that today. Do you think that's a fair statement?
Susan Gimilaro 18:37
I think that's a fair statement. I think that's a fair statement.
Unknown Speaker 18:41
Yeah.
Susan Gimilaro 18:42
Because, you know, it's still be the person who's got the bag of food and the bottles of juice and the glucose tabs and, you know,
Scott Benner 18:51
let's not be the woman without her because it was out. Yeah, that really is the other side of it, isn't it that people it is don't want to feel like they're around sick people. Right? Right. Not everybody but but you're gonna bump into someone that has that feeling.
Susan Gimilaro 19:09
It is and it's not just that feeling. It's also the the sense of, you know, we don't want to be with her because she's just too complicated. You know, there's too much that we have to be aware of, you know, to be with her. And that's that really was what prevented me in the early days.
Scott Benner 19:32
So I have to say much I have two versions around that. What is hiding it look like? Like, how do you pull that off? How do you go to dinner without being the complicated the complication for them?
Susan Gimilaro 19:46
Oh, I ended up with high blood sugar. That's what I was gonna because I'm not going to go to dinner with a low blood sugar.
Scott Benner 19:51
So you ignore your your health to avoid a low right because they can see it. But they can't see a high. Correct. Gotcha. Right? They do anything to avoid alone? Yeah, well, that just made me sad. Susan, early in the morning, don't kill me like this. I just put a tape, I just I swear to you, if sadness felt like something, it just ran from the top of my head to the top of my toes.
Susan Gimilaro 20:21
Yeah, those were hard days. They were hard days. But, you know, I didn't have all the knowledge either. And maybe the diabetes is, you know, community didn't have enough knowledge to share with me as well, because I did not get much guidance. But again, I say, Did I not get enough guidance? Or was that the knowledge that was there? You're going to eat three times a day, you're going to have your snacks and everything's going to stay on time?
Scott Benner 20:53
So yeah, I think the I think the ladder. I mean, I wasn't there for that, aside from having a friend who had type one, but we never talked about it. And you know, I've said before, like he was just the guy like you when he was driving you all like the whoever's in the front seat with him would just pay a little extra attention. It was almost like you were driving to eat because and you never knew why, like, just sometimes Mike didn't make tight turns, you know what I mean? You know, sometimes my guts thoroughly Mike's sometimes he got silly, and, you know, he or he'd get very insistent that he would need to eat. And I look back now. And Gosh, I really wish that I knew then what I know now, because I wonder how much differently his life would have been. But I think it makes the point that you're saying, which is I've been digging into this in a couple of recent episodes. That's all there was. And it means and it was so much better than prior. I do think we forget that. I mean, insulin is, is even discovered in the in the early 20s. I think it's 21. I think this is the 100 year anniversary in 2000. Right? So So prior to 20 or 1921. If I have the net if I have the year right. Prior to that you my daughter, my friend, Mike, pretty much everyone listening to this just just gets diabetes, they look up at the mall one day, their visions blurry and then in a couple of weeks or months, they're gone. Right, right. And so so being able to inject the thing twice a day, and to live back then what were they hoping for 40 or 50 years? Do you remember what they told you?
touched by type one is a great organization. That's just me telling you that from my heart, you can choose to believe me or not. Or you can check it out, touched by type one.org. Well see here an ad where people just say we just want you to check us out. If there's no Have you ever noticed about the touch by type one ad there's no big sell. They're not asking you for anything. They just say come over and check us out. It's worth doing trust me touched by type one.org. We're also on Facebook and Instagram. music as well.
Now let's find out about that on the pod promise, shall we? It's super simple. Okay, super simple. Here it is. The Omni pod promise says this. You do not need to wait for the next big thing from Omni pod. Because with the Omni pod promise, you can upgrade to Omni pods latest technologies for no additional cost as soon as they're available to you and covered by your insurance terms and conditions apply. But you can find out everything you need to know at Omni pod.com forward slash juice box. Let me break that down again. in smaller words. If there's something you're waiting for, like you think, Oh on the pods probably gonna come out with something else one day, I'll wait for that. Because I don't want to get stuck with the thing I have now. Which by the way you wouldn't be getting stuck with because it would be amazing. But that's not the point. That's how you're thinking. You don't need to think like that. The Minami pod promise isn't a thing. It's not a piece of paper you hold you don't have to get them to make you the promise it just exists. So like if you went to alibaba.com forward slash juice box right now. And you found out let's say that you were eligible for a free 30 day supply of the Omni pod dash, then you would get that you would use the dash for 30 days for free. No, nothing to do except use the free insulin pump. And then let's say a number of weeks after that, or months after that, or whenever something else happened. I'll be like oh look, we made a thing. You're like oh, I want the thing. I want the new thing but I just got the dash. You can have the new thing on the pod promise. Am I being clear? I feel like I am on the pod.com forward slash juicebox. Don't wait. Do it now. There are links in the show notes to all of the advertisers and links at Juicebox Podcast comm in case you can't remember the pod comm forward slash juicebox or touched by type one.org. What were they hoping for 40 or 50 years? Do you remember what they told you? Oh, they
Susan Gimilaro 25:27
told me back then they wanted me to last 25 years, they said that was the that was the golden number. And a lot of people were not making it. 25 years. So for you, that would have been right up
Scott Benner 25:41
just around 60 years old. Am I right? You were 34 at the time?
Susan Gimilaro 25:47
Um, let's see. No, I've had her foot. No, I have it for 34 years. I've had it for 34 years. So what would 25 have been 27 and 2552? Well, Susan, someone stood in the doctor's office when you were a young mother in your mid 20s. And told you, if you're lucky, you'll live to 50. Yes. Okay. Yeah. Yeah.
Yeah. And, you know, I kept aiming for that 25 years, 25 years, because the, the diabetes organization that where I received my care, they kept pushing for that 25. And then you would get this medal, and there'd be a ceremony. And so when I got to 25 years, I said, hey, I've made it 25 years. You know, we should have a ceremony, you know, I want to apply for, for my medal. And the doctor said, 25 years is no big deal anymore.
Scott Benner 26:46
Like, wow, I wish someone would have come to me and updated me.
Susan Gimilaro 26:49
Yeah, yeah. Really. And, and I, I felt a little cheated, because I wanted to say, you know, what, 25 years ago, when I was first diagnosed, it was a big deal. And I made it through Yeah, I made it through all those 25 years in good health.
Scott Benner 27:07
I don't have a metal to give you but I give you I'll give you a slap on the wrist and say way to go. That's really something else, you know, virtually, of course, I think a person, we'd have a whole problem. But I'm here. Imagine if I was a diabetes coach. And I went that way. I was like, Hey, good job. But but good job. I mean, honestly, what are some of the things that you did over those 25 years to make it?
Susan Gimilaro 27:34
Well, I really tried to learn as much as I could about diabetes. After you know, when I was first diagnosed, I was pregnant, and I was just determined to do what I could for the health of my baby through both pregnancies, and then, you know, I had this I'm sick to death of having diabetes, I'm going to do what I want. And that lasted for about a week. And and then I pulled myself together just tried to stay on that regimented life as long as I could. And I eventually I'm trying to think whether I went to the pump first, or whether I went to the pen first. I think I went to the gym for us. I took a lot of classes to to understand about diabetes, because I knew the knowledge was changing. I went to a couple of diabetes fairs and talk with different manufacturers. And so just tried to gather as much as I could. Yeah. And stay active, really stay active.
Scott Benner 28:43
I love it. How people have had diabetes for longer save the pump. Like it's a mystical thing that exists off in the distance. I got the pump, pump. It's very common. It's very common phrasing, but I'm always I'm always I'm interested by it like that. It seemed like this, this sort of mystical thing that was out in the future. And if you were lucky, you could ascend to it and maybe put a pump.
Susan Gimilaro 29:09
Yo, yes, yes. Right. And, you know, I remember going to a couple of meetings about about the heat pump and learning so much from other people who were there who were already either wearing a pump or or in we're getting their CGM or or they are to cheerlead us and, you know, back then, the trick was to cut a hole in the pocket in the pockets of your pants, so that you could thread your your pump through your pants, tubing, and they had the tubing through the pants because there was remember there being holsters. I'm sure there were but they may have been gigantic things. And for me, that was the Biggest trick, and I started cutting holes and and all of my pants and my shorts and my skirts and so that I could just thread it right through.
Scott Benner 30:09
Yeah. So you could have the magic of the pump. Right. So the things that you did to make it You said, you know, you tried to learn about diabetes. But earlier you said to that there might not have been a lot of information, I think we've picked through the idea that maybe information just didn't exist, which is why it wasn't there. It was just a lot of people who had been told, hey, if you're lucky, you're going to live 25 more years since your diagnosis. So right, you know, and I want people to hear too that Artem was diagnosed in 2006. And it wasn't, she's gonna live a certain amount of time. The message then was, you shouldn't see any significant long term problems from diabetes for at least 30 years. And I remember thinking, but she's to me, you mean, when she's 32? She's gonna have significant problems. And that was 2006 16. That's only 15 out why am I doing the math, she's gonna have diabetes 15 years this summer. So that was 15 years ago, they were still talking about, like, Oh, you've got 30 good years before your eyes explode. You don't mean like, and it was really the vibe they were giving you they never used the words, right? They never said the words, but they, they would never say like, have vision problems or you know, etc, etc. They just be like, check your feet. You know, there's a lot of check your feet, you know, a lot of check your feet. Yes. And, but that's even just 15 years ago. And so what a great leap is that? I know, this sounds like it's not a great leap. But it's a great leap. If you if you if you step back far enough and take a macro enough view. Susan was told, you're gonna die in 25 years. My daughter was just told, hey, we're just going to probably take a couple of your toes and 30 years like it's, it's, it's a big leap. And now today, no one would say any of that to you when you were diagnosed. Right?
Susan Gimilaro 32:10
Right. And I tell you, when I first started going for treatment, and my appointments, I would walk into the clinic, the where I have treatment is really a well known Diabetes Center. And I'd go and NFB amputees there. And I thought, Oh my God, if I don't get this under control, that's me. Yeah, they're amputees or people who are blind. You know that that can't be my future. No.
Scott Benner 32:42
Did you happen to hear Sophia? Who lives in Russia recently on the show? She's 14? Oh, I started listening to that. Okay. I haven't finished it at some point. She says, because I said to her, like, how did you figure out all this on your own? Like, you're 14? You know, she said that all she could think about when somebody told her she had diabetes, was that she was going to lose a limb. That's what's all she could think about. And that made her dive into the internet to figure out how to manage your diabetes, you didn't have the internet to dive into back then. Limited, it really is. You know, I was I just recorded the 500th episode of the podcast, which is just really me talking for like a half an hour about what the podcast has been so far. And I came to realize while I was while I was talking, basically talking to myself, but I just imagine all of you, which makes it not seem weird while I'm doing it. But the years and years ago, when I first started writing a blog, I used to pitch to companies all the time, that there should be like a depot, a hub, and you should go out and get all the best diabetes bloggers, and collect their writings in one place. Because you're you're making it too difficult for people to find their voices is how I set it. No one ever listened to me. Okay, like Susan. I pitch stuff in meetings, and they're like, Ah, you're not hearing it. And I never mind when I realized why I was saying it the other night recording that that's what I did with the podcast, except it's not bloggers, it's people with diabetes, right? And I'm bringing them all together in one place so that somebody can easily find their stories. I didn't even realize that. I know that sounds weird. You'd think that might be something I realized, but but it's ease of getting to the information. That's always the most important part. You know, people can talk all they want about like, Oh, we have a program to tell you about this or that. It's all boil. It doesn't matter if some company launches a program about the importance of some aspect of diabetes, it doesn't matter because they're not going to actually reach anybody with it. If you can't find it, you don't have time to find it, you need to have everything in a place. So that's, I think what you lacked back then.
Susan Gimilaro 35:08
Yeah, I mean, I think, you know, when I think about your podcast, you you provide us with so much information. But and then on the your Facebook page as well, the bold with insulin it is where we're hearing from real people who have real lives and real experiences with diabetes. So, you know, we feel like we're not an anomaly someone else's, is running high blood sugars for unknown reasons, or someone else who doesn't have their basil set correctly. And, you know, you don't feel alone, when when you're connected with other people who are on the podcast or Facebook,
Scott Benner 35:53
I appreciate that. And I'll tell you the other thing. I said this again, on the in the fight, I don't love that I'm on Facebook, I am not a person. It's like Facebook's amazing. It's just, it does this exact thing. So well. It allows, it allows people to have a private place to talk about things. And the what I what I like about it. People might people from the outside might not see it the way I see it, right, I see it as a tool for all of you to be able to talk to each other. Sometimes you can be there and have this feeling you see it on Facebook all the time. Like somebody just asked that question were searched, the pot is searched the thing like don't be lazy. I'm like, No, no, that's wrong. You want to encourage people to keep saying even if it's the same thing over and over again, wait, what you don't realize is even if you saw somebody say this thing twice or three times, and it starts feeling repetitive to you, there are 1000s of people who don't comment, who are seeing it for the first time. And so diabetes really isn't an unending number of problems to talk about. I mean, there's a lot of variables, right, but there isn't an end to them at some point. And so you need them to keep being turned around. Like you have to turn it up, like if they go down to the bottom and pull it up and bring it back to the topic. And because someone new is there to see it again and again. And someone else has ascended to a spot where they understand it well enough to answer you. So you want to encourage those conversations like So anybody who says, you know, search the forum, don't ask questions that have been asked already, you are missing the exact reason why it's so valuable. That's right. Keep being sad, and it needs to keep happening. Because you might have diabetes now. And you might have gotten over the shock or gotten over this or learned how to Pre-Bolus to whatever you figured out how to do and good for you. But today is somebody else's first day of having it today is somebody else's first day of having the courage to try to find out more about it, to speak up. It's somebody's first day for so many different steps along the journey. And you have to let it keep happening. I'm very happy to be the person or a person who will has a space where that happens. And I think and we all appreciate it. We really do that. That's it to me, it's just, you know, it's me saying like, oh, See, I told you I want it like there is a small part of me that wants to go back in time to all those meetings ago. I told you people to do this. But all right, he didn't do it. I did it instead. But I had to wait for the technology to allow me to do it. Right, because I wrote I wrote a blog and the blog was great, but it still doesn't work the way the podcast works, the podcast ranks better. And so, you know, to be honest, it's a full circle idea of what you talked about about learning about diabetes. I had to wait for the technology to share diabetes the right way. Right. I think this is a sweet spot to I mean, honestly. no judgment. Again. You're a woman in your 60s listening to a podcast that probably shocked you the first time you did that I'd imagine.
Susan Gimilaro 39:09
Well, you know, I really didn't think I would find. Well. You know, what really shocked me is a few minutes ago when you said Oh, when you were diagnosed 34 years ago, there was no internet thinking. You're right. There was no internet. There was no internet. So there was no way to learn. The information that we we have today there there was no Facebook for us to connect and podcast. You're right there. It didn't exist. So so times certainly have changed for me. And listening to a diabetes podcast was not something I would think I would be doing. I didn't think there'd be one out there
Scott Benner 39:55
who would even know what a podcast was probably you know why they call them podcasts. I do not Because the first time they were available to people was through the the apple book was called iPod. That's amazing. I couldn't think of the I, it was the first time you were available. podcasts were available. It was audio that people would record from their homes that was available through an iPod and they became podcasts because you were casting your voice over the iPod. not know that. Yeah, that's great. Now I think iPods don't even exist. Or maybe they do. But I don't even know. Because everyone even now. But in 2007 when I launched my blog, I learned later that I think it was maybe the fourth diabetes blog in the world. Like, you hear a blog now and you think like oh, blog yet everyone has a blog. My dog has a blog. You don't I mean, but right. And there are people whose cats have Instagram, so I'm just saying like it. But back then that was not a real thing. No, no. My link to my my link to my blog. Was http colon forward slash forward slash www died. I want to say it was max something that I forget even I used to use this program iWeb It was iweb.com forward slash and then I swear to you, maybe 60 characters and letters jumbled up afterwards? Oh, my gosh. Times have changed. Yes. Yeah, it was. It that's how long ago it was. And so I get excited thinking about, like, I don't know what comes next. Right. Like, I don't know what, better than podcasting. Right? If blogging was better than you, you know, at the, at the library. And and podcasting is better than blogging, like, I don't know, what comes next. Or this may be is just kind of the pinnacle of of being able to talk right into people's ears. But I'm committed to keeping up with it. Because there's more to learn that we don't even understand exists yet. That's right, you know, that's right. I can't wait to find out what that is. I can't I am. I describe the podcast, in that 500th episode, as it's basically a time capsule, I'm leaving behind for my daughter that other people get to benefit from, you know, so I just hope one day that she listens through it as an adult. And can can accomplish what you did. And even maybe what I did, and what people listening if done without having to go through all of the the harshness that I had to go through to figure it out. Right, he's you know, so me. Alright, Susan. So in this term, tumultuous story, where the hell do you get cancer in this timeline?
Susan Gimilaro 42:56
Well, it was, it was quite a shocker to me, I have to say, and, and, and this is when I was diagnosed, thanks to my diabetes ophthalmologist, which is kind of strange. I had been, I had been writing a grant my first large ish kind of large grant large for me. And once I was to start a new project, once I was finished with it, I was exhausted, I was so tired. And, and then the eyes again, my eyes were really sensitive to light to the point where I would have my sunglasses on my nightstand and put them up, put them on when I got out of bed until my eyes adjusted. So I said, Well, this, I get to see my ophthalmologist. And I walked in to her office, and she said, there's nothing wrong with your eyes. You know, she did all the testing. She said, there's nothing wrong with your eyes, but you look awful. And I said, Ah, it's a makeup free day. And she said, it's not that kind of awful. You need to be seen by your doctor right away. Okay, so the next day, I went to see my doctor and walked in and the nurse said, You look awful. Like, I've heard
Scott Benner 44:31
you everyone. Everyone's saying it.
Susan Gimilaro 44:34
Yeah. And then the doctor said the same thing. And he's like, what's up, I said, I'm tired. I'm a little bit sluggish on the treadmill, just, you know, just tired. And so he sent me off for blood work. And at the end of the day, he called and said your red blood cells are Below, well below normal your white blood cells are well below normal and the emergency room is waiting. You need an immediate transfusion. Like, okay, all right, so off to the emergency room, my husband and I went and my sister joined us. And four days later I was out of the hospital after having five transfusions and a bone marrow biopsy. The following week, I was diagnosed with multiple myeloma, which is, as of now in uncurable blood cancer. So, how long ago was this? 10 years ago? Okay, 10 years ago, and I don't know what I would have done if it hadn't been for going to see my diabetes. ophthalmologist, I don't know what would have happened.
Scott Benner 45:57
Could your have blood values have gotten so far off that it impacted you? Could it have killed you at that point? Like, where do you think you would have just passed out and somebody would have shuffled you off to the hospital?
Susan Gimilaro 46:09
Yeah, I think that's what would have happened. The doctor had said to me, I don't know how you're at the gym, I don't know how you're on the treadmill, you're all of your blood cells are so low. So I, I got the diagnosis. And at that time, they gave me three to five years to live. And I took the I took my diabetes playbook out and said, Well, you know, I have diabetes, that's part of my life. Now I have cancer, that's part of my life, and neither of them will be my life. I'm just going to move forward. And if only it were that simple
Scott Benner 46:57
way, you can say it. It's like, you know what I'm gonna do, I'm gonna cut out some carbs. And I'm gonna drop 10 pounds. And then like, a week later, you're like, I'm eating potato chips. I don't know what just happened. So yeah, I mean, saying it's one thing, right? And then right, but you're you're saying something that you feel like you don't have real control over. Is that right? Yeah. I'm sure attitude.
Susan Gimilaro 47:20
Well, of course. Yeah. I mean, I have a very positive attitude. I mean, they gave me three to five years. And here it is. 10 years, you know. But my first Rude Awakening was when they started me on treatment, which was the following week, and part of the treatment was Dexcom. methadone. that lovely steroid that puts your blood sugar's through the roof. Oh,
Scott Benner 47:46
yeah. So yeah. So now you're fighting? does it become difficult to focus on everything you have to focus on?
Susan Gimilaro 47:57
Again, I really think that's where my, all my years with diabetes really helped me. It's like, this is your life, you get into a routine, you know, what you need to do, and you just got to move forward with it. So but it was always little hurdles that I had to, to overcome. So the dexamethasone was needed. And so we had to adjust my, my insulin at that point, and and I was on a pump, then. I was on a pump. I was on a pump, then.
Scott Benner 48:36
How much do you earn? How much more did you have to go to? Like, what was your percentage increase? Oh, like 50%? Wow. Yeah. That's almost like being pregnant at that. Right? Yeah. Yeah.
Susan Gimilaro 48:50
The dex was only once a week for three weeks, and then off for a week. So it was just a day or two where I really had to adjust my insulin. And then I would settle back down.
Scott Benner 49:05
What was that treatment? Like? Was it hard on you physically?
Susan Gimilaro 49:09
Besides actually it? It was not? And oh, and I have to tell you, so as I said, I had been really tired because I had written this grant. So the morning I was diagnosed with multiple myeloma the afternoon I got the award letter for the grant
Scott Benner 49:28
which I accepted just all anti climatic I would imagine like Oh, great, good. So but but Susan, you don't do that thing. Do you? You from a different generation, like you don't look at the grant coming in and go well, if it wasn't for my bad health news, I'd be able to enjoy this. Like you don't feel that way about things.
Susan Gimilaro 49:51
No, I don't know. it for me. It was kind of the yin and yang that day. I you know, I got this terrible diagnosis and Morning, but then I had this great news in the afternoon. And I wonder how I would have responded if I got the great news in the morning and the bad news in the afternoon?
Scott Benner 50:12
Yeah, I don't know, you would have been a little higher coming into the other thing, but also, look, I don't, I don't have a first hand knowledge of, of cancer. But I have had my, my iron be so low that a doctor said to me, I don't understand how you're standing. Right? You know, so I do get that idea of, I think it's fascinating how your body can just, like almost will itself to keep going. Right? You don't, you don't really realize it's happening. You have this decline in function. And the people around you can see it, but you can't, because your body is just like, stay alive, stay alive, stay alive, right going, which, which should be something that people who who have higher blood sugars and say, Oh, I feel fine. That's what you need. That's one of the things you need to realize is that whether you feel fine or not, you're not fine. That's your body just going stay alive, stay alive, stay alive, like your body when your blood sugar's 250. All the time, your body is basically saying to itself, let's just try to keep going until hopefully this gets fixed, or we fall over one or the other. And it's fascinating how how the human body can do that. It is at no point did you think, Wow, they are really trying to get me off this planet, like the one guy told me 25 years now this one's telling me three to five, like people are like, Did that ever occur to you?
Susan Gimilaro 51:38
Um, you know, I really am a very positive and optimistic person. And
Scott Benner 51:45
not Hi, Susan Are you know,
Susan Gimilaro 51:49
when I was diagnosed, you know, he's, the doctor said to me, the oncologist said, Well, why don't you call them and think about it for a couple of weeks? to think about, you know, I'll start treatment this week. You know, I have nothing to think about. I want to live and I've got a life ahead of me. And so it was, it was quite a journey. You know, I had a couple of infections, one for my CGM. You know, my white blood cells were low. And, and I thought I had cleaned by my sight, very well put the CGM and ended up with a massive infection and in the hospital for eight days and a small surgery because the infection was so bad. You know, I didn't anticipate that. And
Scott Benner 52:40
your body wasn't up for fighting. Even small bikes are the way you put your CGM on a million times that right. Yeah, I see. Okay. No, no, my
Susan Gimilaro 52:49
white blood count was low enough that even when I went in the hospital, I would have an isolated room. Isolated room because the fear of infection was was great. How did
Scott Benner 53:02
you handle COVID?
Susan Gimilaro 53:05
Well, you know, it was, the isolation was hard. But between having diabetes for so long, and having cancer, for then, at nine years, you know, I had already learned that I'm never going to touch a doorknob in winter to begin with, you know, I'd always use my sweater that you know, the sleeve of my sweater, or, you know, so I had some of those habits already in place. Because I knew, you know, with having to, you know, serious illnesses, I really had to manage my infection control, and I always would come right in the house, wash my hands first thing, and so
Scott Benner 53:51
it's okay, so some of those projects are teaches you how to open a doorknob with your butt cheeks, I guess, basically.
Susan Gimilaro 53:56
That's right. Yeah, I will say I did have a moment. I had about a week where I was pretty frightened by COVID. Because I thought, you know, you look around, people are catching COVID people are dying, they're over 60. They have to, they have one or two illnesses. And I thought, if I catch it, then I may die. I'm not going to die because I've diabetes and I'm not going to die because I have cancer. But if I catch COVID I might die. Yeah. And so so that was quite sobering. It took me about a week to pull myself out of that and saying, you know, you know what to do. You know what you need to do keep your blood sugar in good control. Keep away from germs and railings.
Scott Benner 54:48
Yeah, don't look Rawlings, right. And so, before we move on for that, I just want to Did you get vaccinated? I did. You did. Okay. I did, too. Honestly, I didn't think that I wasn't anywhere near the situation you were in, I was still like, I'm doing it. Also, my wife worked on one of the vaccines for, you know, a year and a half in my dining room. So it almost felt like, it would have been rude. Sleeping on our dining room table, I felt like, you know, it would be like, if it took me a year and a half to make dinner and everybody was like, No, I'm okay. So, yeah. But anyway, um, well, I'm glad. Are you moving around more freely now with a vaccine? Like feeling better about that? Yeah,
Susan Gimilaro 55:34
I am, I feel better about that. Occasionally, if I'm going to be in a big crowd, I'll still put a mask on. And I think some of the, the, the habits that I've always had will continue like washing, you know, wiping down a shopping cart. Before I go in a store. I was doing that pre COVID.
Scott Benner 55:56
And I'll continue doing that. Just continue it. I have to say, I know you hear people say it all the time. But I really feel it. I have not been sick. And I think maybe one time in a year and a half, like, Yeah, I thought maybe out maybe I will do the same thing. Like if I'm going to the Home Depot in the middle of flu season, maybe I'll just be like, Huh, pop a little mask on and jump in. You know, I mean, other cultures do it. Without hesitation. Right? Right. You know, if you're sick, you don't go outside without a mask on in Japan or China. That's a, it would be considered to be like unthinkable there. So yeah, no, I mean, something got to come to this understanding of other stuff. Well, well, so. So you've been living with, you've been living with the diabetes that was supposed to kill you. 14 years ago, for 30 years, you've, you've now been living with cancer for 10 years that they told you three to five. And I don't want to ask you some trait like does everyday feel like a gift thing, but I do want to know what it's like to wake up every day, when you've been told these things.
Susan Gimilaro 57:09
You know, I wake up every day saying today is gonna be a good day. I honestly do. I read this book called tiny habits. And that's one of the first habits they've tried to teach is wake up every day saying today is gonna be a good day. And it is,
Scott Benner 57:26
I'm in, you know, a totally optimistic person. I'm very hopeful. But I'm also I'm also not Pollyanna. So I see what's wrong with the world. And I know what and I know where the problems are. And I know where the fights are in the struggles are. But I, I swear to you, I wake up every day like Groundhog Day. I'm just like, let's go get it. By now, has anyone not seen if you've not seen the movie? Groundhog Day, please. When this episode is over, go watch Groundhog Day. But yes, but but I wake up every day like, Okay, here we go. And if something bad happens, then I get in front of it. And if it doesn't, then I just do the things I was meant to do that day or the things that I would like to do or whatever we had a we had like tile replaced in a shower. And the the person we had do it really botched it. And I had my phone in my hand to call them and be like, Hey, get back here and fix this. And I was like, yeah, I'll do it. Yeah, and I just got down on the floor, and I fixed it. And it ate up about the next 18 hours of my life. Hmm. And then I just went back to doing the other stuff I supposed to do, right? Like I just I was like, Alright, well, now the floor in the shower needs to be fixed. And, and. And I just think of it. That's how I think of life. like everything's not going to be perfect. When it's not perfect. You fix it and move forward. And it sounds like you do the same thing except with bigger. I mean, you know, obviously I'd rather fix the shower floor than get bone cancer, but I'm just saying like, you have the same attitude about it. What did you What did you do for a living? You talked about writing a grant? Are you still working? or What did you
Susan Gimilaro 59:09
do? I am still working? I'm an education consultant here in New Hampshire. Okay.
Scott Benner 59:15
What kind of college did you have for that? I have a master's degree from Cornell. Ah, see, you're super smart system. I still have a lot to learn. We all have a lot to learn. But you don't get to Cornell by mistake. No, True. True. I sent the application to the wrong place. And I have a message that you've never heard anybody tell that story before. So how much of I'm trying to figure out where your perspective comes from. So was it how you were raised? Was it like where do you get that kind of thoughtful perspective, from Did something happen in your past, like, I know, for me, I grew up really broke, and then my dad left. And, and, and bad things that usually fell, people keep happening. And I find that that falls under the category of, you know, you know, I don't know how to eat, how do you hardened steel like you beat on it or something like that, like I find that like that falls into there did something like that happened to you in the past?
Susan Gimilaro 1:00:24
I don't think so. I think it really comes partly from maybe partly from prayer, but I think more from mindfulness and meditation, and trying to, to take in the knowledge that, you know, today is here, you know, and whatever, there's this great poem that says, you know, whatever is put on your doorstep, you know, whether it's happy feelings, or bad feelings, accepted as a guest, you know, it's come to, if it's something bad, it's come to clear you out for something good, that's going to, to follow. And so that's, and I have that posted in my, in my home. And in my office, it's just my perspective, it's life is, every minute is passes so quickly, and you just take it head on. And
Scott Benner 1:01:29
so there's an ebb and a flow to life, and you expect both,
Susan Gimilaro 1:01:32
there is an ebb and flow to life, it's not always going to be great. And even though you know, I've talked about diabetes and cancer, it doesn't mean that I go into my doctor's office for my labs feeling like nothing awful is going to happen. I do get nervous. I do get nervous when I go in for my exams, because, and for my labs, you know, I've had both of these illnesses for so long. I'm lucky I have no neuropathy at all. And I really, to be honest, I have very few side effects from either the diabetes or the cancer. And I know I'm very fortunate for that. But you know, the shoe can fall, the other shoe can fall, I just choose not to think about that every minute of every day. Yeah,
Scott Benner 1:02:26
good for you. It feels to me like you're, you're on the beach, at the ocean and you want to look at the surf, and you you walk down to the water and enjoy it. But you know, it's going to come crashing in and you don't stand there defiantly you back up, and you go, Okay, let me let me ride this out, right, the way this is going to go next. And then when goes back out to sea, I'll walk back down to the edge again and stare out there for a while longer. Yeah, yeah,
Susan Gimilaro 1:02:53
that's a good thing. So I mean, I think it's important that we accept whatever feelings we come our way, whether there are happy feelings or, or sad feelings or grieving feelings, we accept them, we acknowledge them. And then you know, let them ride right out as long as they need to, and then let go and move on to the next day.
Scott Benner 1:03:15
So when you listen to me say, get your basil, right, have a strong foundation, understand how insulin works Pre-Bolus understand how food impacts and then stay flexible. That's why all that made a lot of sense to you when you heard it.
Susan Gimilaro 1:03:31
Totally, totally in it. You know that basil? The couple of episodes on basil really changed how I manage my diabetes now. You know, it really changed it. And yeah, you have to be flexible and everything that that I hear on the podcast from your, from you from your guests from Jenny, just brings true to me.
Scott Benner 1:03:57
Jenny's gonna love to listen to this episode. Jenny. Are you listening? Hi. She does. So hi, Jenny. She's gonna be thrilled to hear that. And I am as well. Yeah, I have to tell you, I it was Father's Day recently. And I I wrote this little post on my private facebook page about what I thought being like a good dad was and I looked back at it and I thought I just told people, I just basically said Get your basil right Pre-Bolus understood. What I said was like, lay a strong foundation. You know, try to stay ahead of problems. I said, you know, you know, like that kind of stuff. And when I read it back to myself, I thought I just said basil Pre-Bolus glycemic index, they flex. I just said it about and I was like wow. And I dug through it. I was like that's just how I see life. Like the way I talk about diabetes, it's just the way I see everything. And it's just a plot and and maybe there are like simple truths about Psychologically come existences, I don't know if that's that there's maybe a better word in there for that. But there are, there are simple things that you can do that make a lot of things better and easier and, and and more fulfilling. You just have to have to come at them from the right perspective, I guess.
Susan Gimilaro 1:05:22
I agree. And I think part of it, you know, some people have said to me, Well, you know, haven't you ever said, Why me? Why me? I'm like, No, I've never once said that with either diabetes are cancer, because, you know, it's just happened, these are the cards I have been dealt, I'm going to play the cards and, and, and when it comes, you know, when it comes right down to it, I have a choice. You know, I can choose to live and and do the best I can with both illnesses, or I can stay at home and, and worry, and, you know, choose not to live? Yeah, no, we all have a choice.
Scott Benner 1:06:11
It makes a lot of sense to me. I don't you know, I not that I'm acquainting a person with a bug. But I don't think you know, when a shoe comes down and on, and I don't think the last thing I thinks is why May I think it just lives its life and and some of them get stepped on? And some of them don't. And that no one. I mean, listen, you said prayer earlier. And, and I've been candid throughout the podcast that I don't have any religious holdings at all. And yet, the way you see the world in the way I see the world are exactly the same. Right? I think so. Yeah. Yeah. I just, I just think that there's randomness, and the randomness might smack you in the face? And if it does, I mean, you've got a choice ready to lay there and die or get up and try to keep going? Right? Right. There's no other option, in my opinion, especially for me, because I don't really believe that anything happens after my brain shuts off. So I need to stay here as long as I can. Right? You know, I mean, like, I need to see a I need to watch the bad TV shows that I need to see more of that. I but no, but it truly what I need to see is I want to watch my children, like have a life as far as I can. I want to talk to my wife one more time, like I want to, you know, those are the things that I'm here to do. I want to see things I want to go kind of experience different places that I haven't seen before. But moreover, like, continue to talk to people and hear about like, I mean, all the stuff you said today is, I would have no way of knowing any of this without this podcast. Like you, you all have no idea like what a say, I'm gonna say blessing, because that's the only word that fits here, like what a blessing it is for me to host the podcast. And to get to have all these conversations. It's it's expanded who I am in a in a really meaningful way. And I can't thank everybody enough. Honestly, it's it's really wonderful that we have to share with people so that other people listening know, Susan sends an email and basically says, I'd love it if you'd get somebody on that has type one diabetes and cancer. And I was like, you could be that person. And because that I'm right, right. You weren't looking to be on the show you were looking to, for me to find somebody who had a similar story. That's correct. Do you still feel nervous? You said at the beginning, you
Susan Gimilaro 1:08:37
know? Yeah, yeah. It's been a wonderful conversation. really a wonderful conversation. I'm
Scott Benner 1:08:44
very glad I don't want to sound conceited. But I used to have these phone calls with people who had diabetes. And that's one of the ways that the podcast started. I was like, come on, people would love to hear this phone call. That's what I thought when it was over. That's like, maybe I could record them. Here you go. There you go. Is there anything that we should have talked about that we didn't
Susan Gimilaro 1:09:06
think the only thing I'd like to add is what I have learned from having both of these illnesses is that you need to be your own best advocate. You really need to be your own best advocate you know your body better than anyone else. You know, I had a major procedure with with this cancer and I had been working to keep my eye with my pump keeping myself really under very good control before going in for for this and when I got to the hospital. They said well, you know, we're going to take your pump off and will take over your care. And I really fought them on that. And but they did indeed take my pump away and They, in 24 hours time no one had come in checked my blood sugar. And I thought you don't even know what doses I take, you don't know when I should get them, you haven't checked my blood sugar. And I and I got my pump back. I said I'll take control of, of my, of my insulin, my blood sugar and in this part of my health care, and I had to sign all kinds of papers for it. And and no one ever came back and checked. See how I was doing was
Scott Benner 1:10:37
once you sign the papers? They were out of it? They were out of it and they were answers and they only took your pump so you wouldn't get low. They didn't they're not they weren't going to manage your blood sugar. They just were going to they didn't want you to get low. That's right. Yeah, well, I was 300. I fixed that you weren't low G's. I wasn't low. That's for sure. So it was like it was like you met yourself from back in when you were first diagnosed, like I don't want to pass out I'd rather be high than low. I don't want anybody to see in their case, they were like, this is not a problem we want to create. And I am always fascinated by the fact that a hospital will put you into a procedure where you're going to need your your white blood cells and you're going to need your body to fight infection and to help healing and then they drive up your blood sugar. So that that's not possible. Right? Fascinating.
Susan Gimilaro 1:11:26
Right? So so you know, I always tell tell people, just please be your best advocate. No one knows you better than you know, knows your body better than you. And
Scott Benner 1:11:37
I would add to that no one cares about you more than you. I would agree. Yeah. Even though there are medical professionals and I'm not saying they don't care, they're still there in a business. Right? You know, they got to go from you to the next person to the next person. They're not your personal physician is not a movie. This is not your personal physician. You know, they mean it's a brain who's their mechanic and they're running from car to car.
Susan Gimilaro 1:12:01
That's right, you know, and they don't have it's it's not again that they don't care but they don't have the time to really get into your understanding what your life is like and and what your blood sugar's are like, except tweak it here, tweak it there, and I'll see you in six months.
Scott Benner 1:12:20
That's amazing. I really appreciate you doing this. This was wonderful. Thank you
Susan Gimilaro 1:12:24
so much. I was so nervous about it. But I really this has been really wonderful experience. Thank you so much, Scott,
Scott Benner 1:12:31
my right back at you. I completely agree and and your computer didn't crash the whole time. That's right, your computer crashed three times this morning, but never once while we were talking. So thank goodness and maybe your prayer work.
First of all, a huge thanks to Susan for coming on the show and sharing us her story and sharing her story with us. Thanks also to Omni pod makers of the Omni pod dash and the Omni pod promise Learn more at Omni pod.com forward slash juice box. If you want to check out an organization doing wonderful things for people with type one diabetes, you have to look no farther than touched by type one.org. I want to take a second to thank you all for listening to the show the way you do being so supportive and and sharing the show with others. It's a big deal to me and that really, really helps the podcast. Thanks so much for listening. I'll be back soon with another episode.
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