Scott Benner 1/14/25 Scott Benner 1/14/25

#1405 Needle Phobia

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Erika and Scott discuss needle phobia.

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Scott Benner 0:00
Whether it's shots, pens or an infusion, needles are part of life with diabetes, but what if just the thought of them makes your heart race today, Erica Forsyth and I are going to talk about the fear that's more common than you think, needle phobia. You

if you'd like to reach out to Erica, she's available at Erica. Forsyth.com nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget, if you're a US resident who has type one or is the caregiver of someone with type one, visit T 1d exchange.org/juicebox right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box, the diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about travel and exercise dehydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables.

This episode of The Juicebox Podcast is sponsored by cozy Earth. Use the offer code juice box at checkout at cozy earth.com and you will save 40% off of your entire order. Today's podcast is sponsored by us med. Usmed.com/juice box. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, libre, Omnipod, tandem and so much more us, med.com/juice box, or call 888-721-1514, Erica, welcome back. It's good to see you.

Erika Forsyth, MFT, LMFT 2:17
Thank you. It's good to see you too. We

Scott Benner 2:21
just finished up our our short series on caregiver burnout, and we're jumping right into another, another sizzling topic, needle anxiety and needle phobia. You were nice enough to pull together some some notes and thoughts. I've been doing the same. I've also put up a post in the private Facebook group. It's been up now for about a month. It got back about 50 comments, people sharing their needle phobias and stories and some things that helped them. So we're going to weave that into this conversation. But overall, I think that people with diabetes can get, I can't believe I'm going to say marginalized, but I think they can get marginalized around this because people just say, Oh, you have diabetes. You must be fine with needles. That's it, as if having a needle phobia goes away if you have type one or type two, which is just kind of silly, but definitely what I've seen in the world with Arden over and over again, dentists, blood draws anywhere where you intersect a needle. People just assume, like, Oh, you must be like, totally cool with this, because you have diabetes. But I don't think that's the case, absolutely.

Erika Forsyth, MFT, LMFT 3:25
And I think one of the interesting research facts that I learned is that it's really common to have a needle a fear of needles, needle anxiety, or actual needle phobia, which the technical term I also learned is trypanophobia, okay, which is the intense fear or aversion to needles injections or medical procedures involving needles. And if you have kind of the diagnosed trypanophobia That is a specific phobia, meaning it's you have this irrational and overwhelming fear that goes beyond the normal discomfort most people feel about needles, but from this research, this is 25% of adults, 50% of teens and 63% of kids are freaked out by needles, And that's from the make Foundation website, which I'll reference throughout our conversation, which is a great practical tool, but I just think, Wow, that's a lot of us out there in the world, whether you're living with with diabetes or not, that most of us, when we go and get our blood drawn, aren't like, feeling great about

Scott Benner 4:37
it. People aren't just like, oh, this is gonna be awesome, right, right? And why would you I don't have a phobia. Like I have a procedure, I realize, like, if I get a blood draw, I've learned to breathe in during the needle being inserted. That was my thing. Like, you inhale as that's happening, and something, it lightens the pain. But in the end, you're at the you're at the mercy how good you're full of. Omnis is a lot of times too. You know, that's

Erika Forsyth, MFT, LMFT 5:02
so interesting. I do the opposite, Scott i I've learned to breathe in, and then as soon as I feel the needle going in, I breathe it out. Oh, okay, right in that moment. Anyway, whatever works Right, exactly, right.

Scott Benner 5:16
And it just, it's tough, because I was getting blood draws a lot for a stretch, back around my low iron problem, which I thankfully don't have to do anymore, but I was found myself there a lot, and you really do learn it is a crapshoot. The person who's helping you is either sometimes magical at it, yes, or it just feels like they're just like, just hoping the blood comes out, you know. So I can see that being a problem. But anyway, this is a much larger issue than you would think, and I learned that reaching out through the Facebook group, but also to be candid, and I'm not going to share over share, but Arden has a pretty significant phobia, and I'm confident calling it a phobia, based on her reactions to to injections. So anyway, where do you want to start? Yes,

Erika Forsyth, MFT, LMFT 6:01
so I think just having an understanding that it is really common, and there's nothing wrong if you have a needle, a fear of needles. And I also think it's important to note that while we're going to be speaking about this for the person getting injected, whether we're talking about IVs for a procedure or blood draws or site changes or injections or insulin. I also want to just note that parents who are having to inject or chase their child around or hold them down, you can also have a real traumatic experience as you're trying to save your child, right, keep them alive, but in so doing, you are feeling like you're instilling this traumatic experience on them. And so we want to walk through some of these experiences and tools, but just that that is so painful and so hard emotionally for you as the parents. So I just want to address that, and what we will speak to that as we work through these topics? Yeah,

Scott Benner 7:01
that's awesome. I concur. I've have had the experience. So I know it's I know what it's like. Can I read this thing that you have here from the MEG foundation? Yes, pain is a biological, psychological and social experience. On the biological side, the body's way of telling us something is wrong to check it out. A nervous system sends messages to your brain. Our physical state impacts how painful something can be, like hunger, sick or tired. So, yes, okay, and then psychological here it says, pain may be worse depending on our mood. I didn't know that. And socially, how we react or view others around us impacts how we experience the pain. Wait, what does that mean?

Erika Forsyth, MFT, LMFT 7:42
Yes, so, okay, so, for example, I think as we talk about pain from this framework that it's a biological, psychological and social experience with the social part when your child is running down the street and they trip and fall and they skin their knee, and they look at you as the parent, and if you are, we've talked about this even in the parenting series, overreacting and oh my goodness, do we need to go run home and like, over, over, over, dramatize the situation that child is then learning, oh my gosh. This is really scary. I really hurt myself. This pain is really bad. And I certainly we're not encouraging you to like, to be like, you're fine. Get up, you're fine. You know, it's finding that sweet spot of enough validation without over dramatizing the moment. Okay,

Scott Benner 8:30
that makes sense, and I've tried that while Arden is upset about an actual injection, and truth be told, like they doesn't get us to the finish line, but it does, I don't know. I mean, the reason I brought this up to do is because, after having this experience with Arden for so long, and then I was like, let me reach out and see how other people are feeling about this, and then getting so much feedback back from people, I thought like, I mean, I know you have to do it to stay alive, but the minute that it doesn't become to stay alive, Arden will do anything to avoid it. She becomes the bad guy in a bad movie when he's caught. Like, you know what I mean? She would do or say anything to avoid the injection, like it and she doesn't. She knows it's not making sense while she's doing it, it doesn't matter. Like, it's irrational, oh, she's begging for her life in that moment. Is how it feels really. It's really sad, but interesting too. Yes,

Erika Forsyth, MFT, LMFT 9:22
it's so intense. And when we're gonna talk through that, that fear that feels so consuming, but yet you can, you can have an out of body moment and say, Gosh, I know this is I know I'm gonna be okay. I know it's gonna hurt for a second, and then I'm it's gonna be over. But in that space of anticipation and fear can become so overwhelming and paralyzing. Yeah,

Scott Benner 9:47
and it doesn't seem to make any sense, because the second it's over, like laughter will come sometimes just like, from abject fear to like, just, I can't believe I was that upset. She will tell me that part. Of the consternation in the process is that she understands how ridiculous it is that she's scared and she's almost scared and mad at or embarrassed with herself at the same time. Yeah, yes,

Erika Forsyth, MFT, LMFT 10:15
there's, there can be so much shame attached to this experience, and I think it's important to understand as we talk about the pain, it's not just about the needle or the pinch or the site change pain, right? So, and I think also the physical state impacts how painful something can be in the biological realm. So if you are hungry, tired, sick, you're going to experience your brain is going to send in the nervous system that message like this hurts way more now because I'm sick and tired or hungry, that if you are not those things, just something to remember. Do you want to

Scott Benner 10:54
go through the causes of needle phobia? Yes, yes. So

Erika Forsyth, MFT, LMFT 10:57
and what we ultimately want to get to is when you are stressed, it's going to feel more painful. When you don't have any support or validation, it's going to feel more painful. And again, I'm talking about psychologically and physically. And so we want to get to a place of having more coping skills, and you will feel more in control of the situation, so that the causes could be a variety of things post traumatic experiences. For example, you might have a painful or negative medical experience from a procedure and and someone referenced this actually in the Facebook group where they had a procedure and they couldn't find their vein with the IV and they were poked 32 times. Yeah,

Scott Benner 11:42
that'll stick with you. Yeah, that's a real

Erika Forsyth, MFT, LMFT 11:44
trauma. Yeah, you are then probably going to have to work through that experience every time you go in for, you know, any needle blood draw or IV learned behavior, observing someone else's fear of needles, or hearing stories about expat bad experiences. So even now as you're listening to this, just be mindful if this is becoming overwhelming for you, as we talk about needles or hear us reference various stories and you already are in that space, maybe pause. Take some deep breaths. Come back to this episode. You might just have a biological predisposition. You might just have a genetic tendency to develop intense fears, and it's being played out with the needles. Interesting, the basal vagal response, and some people also reference this experience in the Facebook group, that even the site or anticipation of the needle causes a drop in blood pressure and heart rate, which is then going to lead you to faint and possibly vomit. And then when you have those experiences connecting to needles, that's going to reinforce, oh my gosh, this is a really scary thing. I don't want to I'm going to avoid at all possible in engagement with the needle. Yeah, so those are some possible causes of needle fear or needle phobia.

Scott Benner 13:02
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Erika Forsyth, MFT, LMFT 17:33
It's makes so much sense, right? It's so connected to all the different systems

Scott Benner 17:37
go through the symptoms of what happens when it when it strikes you, okay,

Erika Forsyth, MFT, LMFT 17:41
and so these and these symptoms can be, as you said, you know, for days in advance, she's thinking about that injection. So this could be occurring for you or your child, seconds, minutes. You know, we site change every three days, 10 days, right? That you anticipate the physical symptoms could be increased, heart rate, sweating, nausea, dizziness or fainting. Someone in the Facebook group said it feels like a low, like you're having a low blood sugar episode. The emotional symptoms could be intense, fear, panic, feeling of dread at the site, or even the thought of the needles, and then behavioral, you know, avoid avoidance of the medical procedures, maybe skipping vaccinations, refusing blood tests, despite knowing that perhaps it's going to help you in the long run, or for your health. And it's important, you will avoid being, you know, interaction with the needle. And then what happens as a result? Right? If you do have needle phobia, you might delay the treatment or the or the blood test, or even, you know, a surgery, possibly some people shared very vulnerably about that experience of wanting to avoid the needles that were so it was so scary that you you risked other components of your of your health?

Scott Benner 19:02
Yeah, they're gonna let other aspects of their health fall apart to avoid this needle thing, yes, yeah, it's very real. Yeah. I didn't realize how big of a deal it was people when Dexcom, I don't know what people are gonna remember, they used to have that inserter that was kind of like the clear tube, almost, it sat on an angle, and you had to plunge it yourself, and you could kind of see it all happening. And when, when they went to a self inserter, like, is on this the g7 a lot of people like, well, that's way better, because you can't see the needle. It's such a big deal for me, they would say not to be able to see the needle first. Yes, I guess it's just another one of those things. If you don't go through it. It's not going to make a ton of sense to you know what I mean, like, just, unless it's the way it hits you, you just pick out just it hurts for a second, or it pinches. Or sometimes you hear people say, sometimes doesn't hurt at all, depends on where it goes in. Or sometimes it's things. I take an injection once a week, and I mean, I'm like, like, I the other day I realized I didn't do it. I. I was sitting on my desk, I was getting ready to go out, and I went, Oh, I should have done that. And I just yanked my shirt up and went, click, boom. And I and I just left. I didn't think twice about it. And then later I looked back on it, I thought, Oh, gosh. Like, you know, Arden's like, oh, let's do it. And then the needle comes out, and then it's like, this, slowly I turn thing, and then she's just going in a different direction. Anyway, I just, I want to say, like, if people are having these kinds of reactions, I know, like some of you are like, you know, some some people are using needles to dose insulin, like a lot of them are. But if you're having this reaction, it's, it's tough call, because you got to do it. You can't not do it right and but at the same time, I don't think, I don't think that ignoring it or just acting like, Oh, come on, it's not that big of a deal. I don't know it's tough because I also, I also take your point about like, not making a big deal out of it. Like, like, you know what I mean? Like, you don't want to start like, because somebody's like, I don't want to do that. Of course, they don't want to be like, no one wants to do that. But if you just go, Okay, well, you don't have to, like, are you setting a precedence where it's not that, you know, oh, we'll skip this correction. Your blood sugar is only 180 we'll just let it sit like this for a few more hours because you don't want to do this. I'm sorry. It's just, it's just another thing. We talk you and I talk about that. I'm just like, seeing both sides of it, and neither side feels exciting. But I'm sorry. Go ahead. Go Yes,

Erika Forsyth, MFT, LMFT 21:17
No, you're good. I think just the validation of like this is really complicated, and definitely in seasons of your life, living with with diabetes or with your child, it might feel like it's never going to get better. You're never going to get over it, right? And if you have a needle phobia, it's not necessarily. We're not saying hey, we're going to give you the steps to get over it. We are here hoping to to validate your experience, but then also to provide some tools to help you manage your emotions, your physical pain, through it. Shall we move into some some tools and coping? Yeah, yeah, please. That'd be awesome. Okay, okay, I know I've heard and seen a lot of people use the buzzy bee product, and on their website, they actually had a really great thing that I loved, of making kind of addressing pain and the needle moment in a three prong way. One is to make a plan to address the anticipation or fear, and we're going to talk about that. And then two, manage, have a plan to manage the actual pain during the injection. And then three, have something to focus on during the injection. So I'm saying injection for all the all needle examples that we've mentioned. Yeah, one of the things, the reason why we want to focus on that it's a psychological experience, because what we are telling ourselves beforehand is so important, and obviously one of one of the treatments that if you are in a really needle phobia would be cognitive behavioral therapy, in addition to all the things we're also going to mention, but that would be really important to address. Do you have post traumatic experiences from needles. And then how can we work through that trauma, by also understanding how your thoughts and feelings are affecting your behaviors? That would be kind of on the more, perhaps not necessarily extreme, but more intense or severe, needle phobia, as well as exposure therapy. I was just thinking about, you know, the picture that you posted with when you asked for,

Scott Benner 23:21
oh yeah, that's threw people off, even then someone

Erika Forsyth, MFT, LMFT 23:25
said, Oh my gosh. That makes me scared. And, I mean, it was an intense picture, but it did grab people's attention. And, you know, exposure therapy would be beneficial, like, if you had a visceral response experience or response to seeing that picture, that could be a cue to say, you know, maybe, maybe exposure therapy could be helpful for you to, not to. Basically, you learn the coping skills as you are exposed to that trigger. Yeah, so perhaps you're talking about needles, and then you're working through the coping skills, and then you're envisioning it, and then you see a picture of the needle. Then maybe you're holding the needle and then you're giving yourself the shot. Those are kind of the therapeutic approaches. So the rest of the things we're going to talk through are things that a lot of you already probably do, but we wanted to kind of leave them all here in one, one space, a lot of these things you guys referenced in the Facebook group, and things that I do myself, and then Scott does so just not looking when it's happening. I know that seems really simple, but what you want to do is give your child or yourself that option, all of these things. We want to give yourself and your child the control, and one of the things from the MEG foundation for pain.org, website, they have great you can have an app, have kind of a whole little plan, a printout. So as we go through all these things, you get to engage with your child or yourself. What is helpful for me? What? So we're making a plan. Mm, hmm. To reduce the fear. So do you want to look or not look when it's happening? And you have this discussion, but way before, and a lot of you probably already do this, right? Do you want to hold this stuffy or that stuffy? Do you want to do it in 10 minutes or 20 minutes? Do you the shop. These are more kind of the actual tangible things, the shot blockers, which I've seen some pictures of. I've never used them myself, but apparently they are really effective. And they have, like, the little raised, yeah,

Scott Benner 25:33
they kind of seen them. They kind of conf you. It's like a plastic thing you pinch with a little bit, I guess it's got little, like, pokey plastic things that kind of confuse your your nerve endings, right?

Erika Forsyth, MFT, LMFT 25:42
Yes, yeah, yeah, blunt skin contact points is what they call them, okay? And so you push it down. I don't know, I so I apparently though they're really effective. The buzzy bee is the vibration. It has vibration with a cold pack. I know a lot of people use that the numbing cream, specifically Alma cream is been referenced a lot. I port from Medtronic, yes, as helpful for people for injections. Dia Spider was a new product that I discovered upon researching for this chat. Apparently, I think it's for insulin pens, and it kind of looks like it combines elements of the shot blocker, yeah, basically I'm like, the shot blocker, and just a total distraction, have you? Are you looking at?

Scott Benner 26:33
Looking at a picture of it now, yeah, oh, I see. So it goes around an insulin pen to kind of like, give you the the shot blocker, feeling like something touching and giving you that that confusion, plus it makes it look a little more, little less like an insulin pen might be good for kids like visually as well, yes,

Erika Forsyth, MFT, LMFT 26:51
and also has you know, you choose your color again, this is really To instill control and coping and choice reduces that anticipation and fear, and then hopefully also simultaneously reduces that pain in the moment. Well, apparently, being hydrated or not is really important for pain of the actual injection. Plus, if

Scott Benner 27:17
you're doing a blood draw, so that your yes, the blood volumes up and your veins are easier to get to. That that can also be really helpful. Yes, I read about that too. Even just the having someone drink 16 ounces of water before the injection, it almost like takes their mind off of it, because you're, like, trying to get down 16 ounces of water. Like, yeah, right, it just sort of, it takes your attention away a little bit. That's what I never thought of. What else you got on this list? That's so

Erika Forsyth, MFT, LMFT 27:42
that's so good, because what you have, you have a goal, and you're focused on that drinking, and it has a kind of a two prong positive outcome, play, have a calm music playlist. These are a lot of things that people mentioned in the Facebook group, laying down, or laying down with your knees up, having peppermints in your mouth ice pack on the back of your neck. You know, we talked, we already talked about, you know, inhaling or exhaling, breathing is really important. Oftentimes, we hold our breath when we're scared. One story that the founder of Meg foundation, I wrote her name down here. I'm just looking

Scott Benner 28:18
here. By the way, cool flavor a room of peppermint can redirect attention from the needle to the sensation in the mouth. Gives the brain something else to focus on, helping reduce the intensity of anxious thoughts. No kidding, I love Yes. Could also be grounding. Sucking on the mint can be grounding. Peppermint has calming effects to some people. Anxiety causes dry mouth. The peppermint can stimulate saliva production, making the person feel more physically comfortable. How about that? And because when you said that, when I was like, what peppermint? I'm sorry, I got you off.

Erika Forsyth, MFT, LMFT 28:52
No, that's good. No, peppermint is well, also peppermint is good with, like, nausea too. You might have already just said that.

Scott Benner 28:58
Oh, listen, I went to school in the 80s. If you went to the nurse and you didn't feel well, they gave you a peppermint water to drink and then sent your ass right back to class you don't feel good, drink this now. Get out of here. That was childcare in the 80s. Yes,

Erika Forsyth, MFT, LMFT 29:13
peppermint cure it all. So, so Dr Jody Thomas is the one who created the make Foundation, and she shared this story as she was in training about breathing. And I just thought it was so great. I wanted to share it here, also with and some of these coping skills will work for you or your child for a couple months, and then, just like anything else, you might need to switch, but the breathing, she asked the child, and you can do this for yourself as you're about to get the blood draw, envisioning a color that feels calming or comforting, and then think of a color that is like painful and uncomfortable. And so the child said green, so they and black, green for comfort and black for pain. And then so she, you know, had her close her eyes and invited her to think about inhaling the green and images of green and then exhaling black, the color and feelings around it. And so I just thought that I liked that we've talked about different breathing techniques, but I liked that one to share here. It is

Scott Benner 30:17
important too, because I think when people tense up, they do stop breathing right away, which, you know, a bunch of physiological reasons not to do that. But this is, it's a nice idea. Like, take the good stuff in, let the bad stuff out. Be visual about that. Like, in the end, I'm going to tell you something. I've tried a lot of this stuff with Arden, and usually what she says is, and we'll probably have to bleep this out, Q, that's not going to help, right? But in fairness, I didn't have a lot of luck getting her to do the things. And so I did say, I'm like, I do think we should do some breathing stuff. I do think you should look away for she's like, I have to see it. I'm like, Why are you torturing yourself like she stares at it while it's happening. One time she said, I just want you to just do it, but I'm gonna defend it if it happens. So somebody's gonna have to hold my hands. My son came into the room and literally, like, held her wrists out in front of her while I did the injection. It was horrible, honestly, for all three off, all of us, all three of us, had a different, horrible experience. But as I and it's a self injector, Erica, it's like, click and over. Like, it's that fast, right? And while it's happening, I hear, like, in kind of an amused tone for my son, She's biting me. Then it ended, she cracks up laughing, and she's like, I'm so sorry. I didn't mean I thought I was biting my own hand. I couldn't even tell it wasn't me. Like, she was just looking for some like, I don't know, release, release, yeah, yeah, something. And I'm telling you that all of this took, I mean, it took like, 10 seconds, and it felt like, it felt like we were fighting a war. When it was over, everybody was just like, we did it. But five minutes later it was, it was just like it had never happened, like she and I went out to do the next thing we were going to do, and was just over. It was I looked at her for an hour after that, being fascinated at where we were an hour previously, you know, just really something anxiety and and that adrenaline and the fear mixed together. It's just, it's bad stuff, you know,

Erika Forsyth, MFT, LMFT 32:18
yes, well, but I love that she like part of, you know, if you wanted to use the plan maker resource, it's beforehand going through like because, you know, she likes to look at it. And now you know, like physical touch. You know your body, your brain, can only focus on so many points of physical touch. And so you know, as little as often times with parents, you might hold your child on their lap as they get their, you know, immunizations or their injections, holding asking like, do you want? Do you want me to hold your wrist? Do you want me to give you a tight hug? You know, research shows that, you know, laying your child down on their back and holding their arms down is actually pretty negative, yeah, in terms of their medical trauma? Yeah, they will probably have some medical trauma around that, because it's you're so vulnerable and pinned down. But I also know we have sometimes you have to hold your child to make it happen. So just if you can holding them on your lap, Wrapping Arms Around like you're giving them a big hug, but they're sitting up. I wish

Scott Benner 33:17
that this would have been talked about when Arden was younger, because she was like a chaser around the house kid, you know. And I do wonder how much of what's happening to her now is from back then, because all I knew to do was, like, grab her and do it. You know what I mean? Like, it's, I mean, Erica, it's, you know, you were injecting insulin. It was happening a number of times a day. And yes, you know, sometimes she was cool with it, sometimes she wasn't. But I do wonder how much of the process that we went through led to where we are now, and I'll never know. I I'll tell you that before she went off to college, Arden hasn't had a correction with a pen ever. Arden's never used an insulin pen once. So she went right from syringes to pump to Omnipod. Yeah, me too, yeah. And you've never used the endocrine and so she stopped injecting when she was four. That's when she got an insulin pump. And I've told this story before, but that a couple of years later, I wasn't sure if she had a bad site or something, but I wanted to inject insulin to check. And we got the syringe out, and she didn't remember it, which, at the time, I took really well. Like it was a couple of years she was maybe six, seven years old. At this point, she hadn't had a syringe in a few years. She's like, what is that? And I was like, Oh, we're gonna have to inject the insulin. And I just acted like, you know, this, I've done this to you 10,000 times, you know? And she had no memory of it, which I thought was great. And it was for a long while, but then all of a sudden, I don't remember exactly how old, but maybe a couple of years later, we were just at a blood draw one time, and she, like, climbed the wall, almost in the room, to get away from it. And then suddenly she had her it felt like she overcame it, but she tells me, in retrospect, she didn't overcome it. She was just like willing herself through it. She was having the same feeling every time it. Wasn't until we got to this send her off to college, situation where I said, Look, I can't send you off to college, not knowing if you can give yourself an injection. If something goes wrong, I'm like so your next bowl is today. Let's just draw it up in a syringe, and you do it. She took that syringe and stared at it for 20 minutes, and then eventually left the room. She locked herself in the bathroom with it, and she came out 45 minutes or an hour later, and she's like, I did it. But she looked like she just ran a marathon coming out of that room, like, I don't know what she went through. She wouldn't let us in, she wouldn't let us help. She's like, I'm gonna do it. I'm gonna do it. It was an hour and I swear to God, she came out. She looked like she just been through three rounds with a heavy weight. She was sweaty and disheveled and like she looked half crazy. She's like, alright, I did it, and that was the end of it. And I don't think she's done another one since then. It's been, like, three years. But anyway, and then people say, but there's a needle in the Omnipod, the one great, one of the great things about that Omnipod is, you put it on, you pinch, you push the button and it's, it's between you and Jesus at that point, like, it's just gonna happen. You know what I mean? So you like, you click, and you just kind of wait. And she doesn't have any problem with the with the Dexcom inserter for the g7 either she doesn't like it and she flinches every time, as if it's never happened to her before, which I've always found interesting. Like, like, it never stops being what it is. If that makes sense, yes, we're not through all your tools, though. I apologize, yeah, but you

Erika Forsyth, MFT, LMFT 36:26
know, but she does so well. That's, I think that's really common, though, for those of us who are on devices, CGM pumps, but to also, as you said in the beginning, to have an aversion to needles or blood draws or IVs insertions, because it's out of our control. Yeah. And so there's something, you know, and I think however you can set up, like, for example, going into a blood draw when she, you know, said she's just crawling up the walls. I think the more you are able to understand what you need, even if you feel like it might not even help, but to then advocate for yourself in that way. Some of these, I thought these were really great examples of if you're able to get an appointment, a lot of people are not able to get appointments for blood draws, but to prevent the time in the waiting room while you're watching everyone else feel nervous, maybe you're hearing kids scream like so if you can get get a blood appointment or ask to be outside and get a text when you're there, your numbers up, yeah, for some people, some people, you can schedule it with the same, you know, Nurse phlebotomist, and develop that relationship. I actually just learned recently I've I my veins are hard to to access for whatever reason. They just, they like to hide. And so I know on my left arm, I know the vein that works. So for years, I go in, I don't look, I point to the vein that works. And they say, Are you sure? I'm like, yep, just this vein. Just do that one, yeah. And I look away, and I do my inhale, I exhale when I breathe, but just this last blood draw, the nurse said, you know, I I'm noticing some scar tissue here. And I said, Oh, why? No one's ever told me that. I just know that's the vein that's easy to find. So anyway, something I said, is that problematic? She said, No, we just might need to use a smaller needle, whatever.

Scott Benner 38:16
I guess, like, I need the spot to last at least, like, 4050, more years.

Erika Forsyth, MFT, LMFT 38:21
So, you know. And also to say, when you get walk in to sit down, if you know your plan, you can tell the person, hey, I'm not going to talk to you. I'm going to look away. This is the arm that I like. I need to lay down. So you're not in your head worrying, yeah, you're not worrying about, oh, do they think I'm rude? Or do they? You know, it doesn't matter,

Scott Benner 38:42
right? Just give yourself less to worry about, yeah, by being prepared ahead of time.

Erika Forsyth, MFT, LMFT 38:46
Yes, yeah, um, one, 1% person said this in the Facebook group, which I think is great if you're an adult and you have children, but you're the one who's having to get the needle blood draw, have your child come with you, because oftentimes that their presence might either calm you, or you might have to stay more calm because you don't want them to see your fear. That I know that can be helpful. Sometimes this

Scott Benner 39:11
person in the group said that I used to pass out when I was going to get a flu shot, and I'd feel kind of woozy. My dad would pass out as a kid from getting it, and and so prior to having to get my first COVID shot, my mom took me to a therapist to do EMDR therapy, and I think that helped that interesting, like, that's the pre planning we're talking about. Also, the lady that did my COVID Shot said to me, this is my first one. I'm a volunteer, and then stabbed me like we were in the middle of World War Two, and she's trying to kill me on the battlefield. And I was like, Oh, wow. It's supposed to go on your arm, but down a little bit, I think she stuck it into my shoulder, my shoulder. I was like, what is happening? She got done. I went over to my wife, and I was like, oh, oh god. What happened? She goes, what happened? I said she hit me in my shoulder. Should have known, because five minutes before, she shouldn't figure out how to use the iPad. And I'm like, You're right. And she goes, this is my first one. We're all volunteers. And I was like, oh, okay, I thought that meant she'd be more careful, not that she'd just swing like Jason in the Friday the 13th movies at me. It was not pleasant, but again, I lived through it, yes, yeah. And I also don't have a needle phobia. So in the end, I just had an unpleasant experience. I was like, yeah, that hurt. Like, what'd you do that for? And then, like, I was done with it. But if, but if I was predisposed to this, that one experience could have put me down a bad path, for sure, because it was a, it was a really crappy experience, to be perfectly honest with you,

Erika Forsyth, MFT, LMFT 40:37
absolutely may perhaps had you been in a real, you know, anxious space or fearful space, you maybe have the plan to say, I'm going to ask for what I need, and I need someone who's with experience. Yeah, I think we get, we get nervous when we when we are nervous, we often feel fearful to say, You know what I'm going to pass I'm going to wait for this person over here who says they have five years experience, whatever. I wouldn't wait

Scott Benner 41:02
for the lady who knows, though, how to open the iPad that might have been like, like, at least she's been here a day. I would think, usually what I tell people in these situations, they're like, Oh, this is gonna hurt, or I'm sorry. I go, I'm married. It's okay. I'm trying to make light. But you know, humor, I've been through a few things. This isn't gonna be the worst thing that's happened to me today. You should be around with my wife yelling at me about something, this is nothing, or else, something like that, which not even true, but fun to say. I don't but I do wonder, in a real, in a real way, like, it's just like the other stuff that we talk about, where you have something, you don't have something. It's like, when you're talking about somebody with anxiety, I'm like, It's so strange for me to listen to somebody speak with anxiety, because I'm like, I just don't feel that way, and I feel lucky not to feel that way. But this is the same idea. Like, I know the needle is gonna suck, but like, I just don't care. Like, it's gonna hurt, and then it's over. I don't even have trouble the dentist. And I hear some people talk about going to the dentist, like, like, it's the worst thing that's ever happened to them, you know, anyway, I'm sorry. What? Keep going. No,

Erika Forsyth, MFT, LMFT 41:57
well, and speaking of the dentist, I think the I was going to share an example recently with my my daughter, who had two she had two cavities, and the first time we went, we didn't give the we didn't give her the laughing gas. And it was, she was highly anxious. She said it was really painful. So we didn't do the second one. We went back a couple weeks later, did the laughing gas. It still was, it still was painful for her, but her anxiety and her pain scale was a lot lower. Same procedure, same steps, except she had the laughing gas. And I think just our emotional state is so important to acknowledge in conjunction with the actual perceived level of pain. Yeah, right. And I joked with our pain, yeah. I

Scott Benner 42:43
was like, You want us to try to find you some weed or something before we have to do this again? It's like, well, I'm starting to think, like, what's going to help her relax before she has to do this? And I don't know if that would help or hurt her, not, but my brain went there. I thought, Is there something we should do to, like, get her a little loopy first? You know what I mean, like, so I don't know, we didn't end up trying that. But anyway,

Erika Forsyth, MFT, LMFT 43:06
medication, yeah, you know pain medication, or anti anxiety, you know Xanax in the moment. Some people need that, and that's totally okay. I mean, that's your situation. Get something done, right? Like you need to do the thing to keep yourself healthy and to help find a way that works best for you. Is, is great, whatever that, whatever that may be, I'm imagining

Scott Benner 43:29
people showing up the dentist a little, a little half in the bag, going like I was listening to a podcast. They said, sorry if I chilled out a little before this. But I do wonder, how many people do that, self medicate stuff like that. I bet you more than you think,

Erika Forsyth, MFT, LMFT 43:43
yes, and it's okay to ask, right? Like, ask your doctor. Hey, I have, I have needle anxiety, and I have this blood draw. Can you prescribe me one Xanax? I think that's totally probably more common. It's something that people don't talk about. Yeah, this at last one is the the kind of correct term is applied Tension Technique. But basically, if you are if you feel like you're going to faint, just squeeze your muscles, your leg muscles, your butt muscles, your abdominal muscles, repeatedly while the needle is going in, it's keeping your blood circulating through your body okay, and will prevent you from, hopefully from from fainting. So knowing like and you can pre you practice that with yourself or your child. Okay, I'm going to squeeze my butt or my legs or my stomach, and we're okay. We're doing 123, we're going to press the button, any tool or tip to do beforehand, to talk through, to practice, gives both yourself or your child that confidence, that you know what to do when the fear starts and when the pain starts, the physical pain.

Scott Benner 44:51
What is this here? If you're for adults, if you have kids, have them present to watch, and that may be Oh, because parents feel like they got to hold it together. In front of their children? Yes,

Erika Forsyth, MFT, LMFT 45:01
yeah. So I was, I think someone wrote that in the Facebook group and, yeah. So like, if you're this is for someone as the adult, if to try, if that helps, right? Because you want to be calm for your child. You're trying to model for your child, and having your child present as you're having the needle inserted, you're thinking about them. You're not thinking about what's happening. You're staying calm. That could be another tool. I mean, I don't know if you want to intentionally do that, but if it happens, that has worked for some people.

Scott Benner 45:31
I mean, that makes sense to me. I mean, all these things you got to pick and figure out what's going to help you, for sure, yes, but that makes sense to me,

Erika Forsyth, MFT, LMFT 45:38
you know, and having the actual distraction when it's happening. We've talked about the medication, the mindfulness breathing, I think we've covered most of the tools. And just honestly, if you if you're hearing this in your experience needle phobia, your child is I really encourage you to to not shame yourself or your child, particularly as maybe your child's getting older, you know, you don't want to say, Oh, you used to do this when you were a baby. You know, it's time to grow up. Or, yeah, get over this. Get over it. Telling this to yourself like that is that is not helpful for yourself or for your for your child. And so to validate the fear that you're experiencing or your child's experiencing, and then to make a plan, I think is really, really helpful to help you get through this, the experience. Yeah,

Scott Benner 46:32
I'm just going through everybody's feedback on the Facebook group, which I can't say enough thank yous for, because these are really, these people really being honest here, you know, I mean, I've locked myself in rooms. I've have I've had irrational fears about needles my whole life. A lot of people do say like they passed eventually for them, which is, as they got older, I've had minor panic attacks. One person says their kid passes out when they do it. That just happens every time the kid, boom, just goes under. That's crazy. I've had needle phobias as a child. Back in the 1960s like this, this brought in people of all ages, you know, shapes and sizes, to make the to say that this has happened to them. I just think it's very important what you said before, just to not act like, oh, this doesn't really exist. You know, just because you don't feel that way doesn't mean somebody else doesn't.

Erika Forsyth, MFT, LMFT 47:22
Yes, and to this is emphasized from the MEG foundation for pain website that medical providers, they may only get seven to 10 hours of pain management training in their schooling. And so while they want to help you, and, you know, treat you the best you can, for you to feel comfortable, knowledgeable and empowered to ask for what you need. Now again, that says we're talking about, you know, when you're going into into the hospital or labs and then at home, for you or your child to feel the same way, to be educated, to know what's actually going through, to make sure they know what's helpful for them, I think is just is so important and was helpful for me to kind of refresh, to go through my memory, yeah, go through this like, okay, yeah, what is helpful for me and what is helpful for my children? You know, as we, as we face these different experiences with needles, the

Scott Benner 48:20
one thing that even I found like staggering, is the person in the group that said, like, I have tattoos all over me, but I can't give myself an injection. It's fascinating, really. You know, just the way some people react to things and others don't. I'm super happy we did this because you found Meg foundation for pain.org, which is a great resource people should go check out if they're struggling with this. I think whether you're an adult or a person trying to help a child, this would be a good website for you to look at,

Erika Forsyth, MFT, LMFT 48:45
yes, and you're so you're just, you're not alone. It is. It is so common. And I hope that, yeah, that you find some help in this or the other resources. Listen,

Scott Benner 48:57
I can just tell you from personal experience, it ain't no joke, some of Arden's reactions, I can't believe they're happening while they're happening. Like, like, really I I'm standing there, like, what is and it's so you brought it up earlier, like, I don't want to make this about me, but it's hard to be in the room trying to facilitate this thing. Like, you know what I mean? Like, when somebody says to you, no, I guess it's why I can't understand hurting another person, like, because when she's begging, like, begging for this not to happen, and I'm like, Oh no, I'm gonna do it not harshly, like that. Like, in your mind, you're like, No, we are going to get to the end where you are going to get this, and when it ends, you're not even going to care, which is, like, it's even hard to wrap your head around, because, like I said, five seconds after it's over, it's just over, but you're standing there, I feel like I'm gonna hurt somebody. I'm causing somebody distress. I mean, you're not, but it feels like you are. You know, you're having to do it for another health reason, but I don't know, but it's just of all the you know, diabetes sucks. I guess that's really what we should just say. Anything that makes you do this sucks because, but I hope you find a way through it. Like, I don't know how. Valuable we were we weren't the last hour, but I wanted to do this because I just don't hear anybody else talking about it, and I knew a lot of people had to be struggling with it. So here it is. I hope it's helpful. You can go find some resources to to get through it, or use Erica's idea, where you just take a Zanny and then everything's okay. People are gonna be like, hey, this lady, Erica, told me, and I just I took some wine. Now I don't have any trouble with anything anymore, being serious, like, if this was happening to you, like, this badly. What do you think the steps are like after you've heard all this and been through all this stuff? Like, what do you think the steps are that you would take for yourself if this happened

Erika Forsyth, MFT, LMFT 50:39
to you? So if I knew that I had trauma like, you know, severe medical trauma, I would definitely be really intentional in therapy, whether it was EMDR or CPT, to work through and reduce my association with that trauma, and then I would be really clear with what I needed to get through each site change or IV insertion. So if it was that level, right, I was just thinking about, you know, like claustrophobia, for people who are claustrophobic, I am for one, and I know if I were in a small if I had to take an MRI or something like that, or you're in, I can do elevators, but their treatment whether it's medication or coping skills. So I think to think about needle phobia like another really, we probably hear claustrophobia more often than needle phobia, but it's okay. It's okay to take medication, it's okay to go to therapy for this. It's okay to know what you need, and it's okay to advocate, so I would probably start with therapy. Know what my coping like tools are, and feel confident that I could use those. And if that didn't work, then you know, maybe it is taking a Xanax for a blood draw, but maybe you're okay with your site changes, but I think it's really practicing and trying out different tools and knowing what works, going

Scott Benner 52:04
back in my experiences, and looking back over the last however, many years, I do wish that we would have taken Arden to somebody to talk about I didn't realize that it was going to stick to her like this or that, and I think it maybe would have helped her to have, like, talk therapy around it when she was younger, even if it was just specifically for the needle thing, I think it would have been time, well, spent, you know, looking in the rear view mirror. It seems that way to me, at least. Well,

Erika Forsyth, MFT, LMFT 52:29
no, no shame or blame on you as the parent. You know, this is part of, part of the journey as a lot of parents have to go through. And it's never too late, right? Like, it's not too late, if she were open to that, yeah,

Scott Benner 52:41
sure. You go tell her. I mean, that's always the problem with getting people help on something like this is that you have to explain. They have to agree to do it, and it's not always that easy. Like I tried to I'm like, Hey, let's try grounding stuff. She's like, that's not gonna work. I'm like, Let's do breathing. That's not gonna work. I'm like, Arden, the stuff. People say this works for them all the time. She's like, Ah, just do it. But then at one point she's just like, she was almost begging. She's like, I we need to find a different way. And I'm like, Well, I don't want you to feel then there's the other side of it, like you're having a ton of medical, like, benefit coming from this thing too. So like you're trying to find the balance. So anyway, we called it, basically called it off for a couple of weeks. Now we're trying the pills that actually starts today, and then we'll see how that goes. And if that goes well, then great. And if it doesn't, then hopefully, maybe, just like I said, Maybe her situation overall in her life, feeling better might lead her to go, oh, okay, I could try this again. So but one way or the other, we got to figure it out, because she's not going to stop having diabetes anytime soon. So to me, this is just, it's the thing we have to figure out. So hopefully we can get her into a more accepting place. And then I'll bring up again, maybe going and talking to somebody about this, see if I can get her to the joke. I'm not going to give up, but it's a long process, is all I'm going to say, a journey. Yeah, they're sorry, yes, okay, well, thank you again for doing this with me. I appreciate it. You're welcome.

I'd like to thank cozy Earth for sponsoring this episode of The Juicebox Podcast and remind you that using my offer code Juicebox at checkout will save you 40% off of your entire order at cozy earth.com. That's the sheets, the towels, the clothing, anything available on the website, the conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box, or call 888-721-1514, get started today and get your supplies from us. Med, I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe, whichever your app allows for and set up those downloads so you. Never miss an episode, especially an apple podcast. Go into your settings and choose, download all new episodes. Are you starting to see patterns, but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 so.

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Scott Benner 1/13/25 Scott Benner 1/13/25

#1404 Kevin Costner

Melissa initially planned to share a glucagon story, but she recently learned she may have cancer, so the conversation shifted to that.

Melissa is generally healthy but currently facing a cancer scare.
Her mother, a nurse, quickly recognized her diabetes symptoms and got her tested.
In high school, Melissa experienced seizures, treated with glucagon.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Melissa was set to share a wild glucagon story, but life had other plans. Diagnosed with type one diabetes in 1984 she survived three seizures that all happened on Friday the 13th, and now she's facing something even bigger.

Here we are back together again, friends for another episode of The Juicebox Podcast. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin when you place your first order for AG, one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. If you're newly diagnosed, check out the bold beginnings series. Find it at Juicebox podcast.com, up in the menu in the feature tab of the private Facebook group, or go into the audio app you're listening in right now and search for Juicebox Podcast. Bold beginnings. Juicebox is one word. Juicebox Podcast bold beginnings. This series is perfect for newly diagnosed people.

This episode of The Juicebox Podcast is sponsored by the Dexcom g7 the same CGM that my daughter wears. Check it out now at dexcom.com/juice, box. Today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old, Omnipod. Omnipod.com/juice, box. You too can have the same insulin pump that my daughter has been wearing every day for 16 years.

Melissa 2:05
Hi. My name is Melissa. I was diagnosed in 1984 with type one diabetes, and excited to speak with you all on my experiences so far.

Scott Benner 2:16
Wow. 1984 Yes. Now when people here in 1984 they immediately think the book, right? Yeah, right. It's the it's the only thing that jumps into people's heads. But the book was written much earlier. Isn't that fascinating? Oh, much earlier. Yeah, yes. Now, how old were you in 1984 I was nine when you were diagnosed. Was it a shock to your family? Do you remember anything? Did they ever share any stories with you?

Melissa 2:42
It was a fairly big shock. Luckily, Mom was a nurse, so she recognized some of the signs and

Scott Benner 2:51
got me into be tested pretty quickly. Did you never go to a hospital? I did.

Melissa 2:57
I was tested through the primary care physician just with a quick urine test where mom worked, and then he immediately sent me to the pediatrician, who sent me to the hospital pretty

Scott Benner 3:09
quick, especially for the 80s. Now, here you are, 1984 type one diabetes. The people who are helping right? Doctors are like, Oh, things are so modern now. Oh, yeah, right. But you look back on that time and you think, oh my gosh, like, I don't usually ask this so soon, but how is your health now? Today,

Melissa 3:29
it's fairly good, no major complications, just like some proliferative retinopathy, non prolif, sorry, non proliferative. So it's been staying pretty stable. Other than that, going through a cancer scare right now, had a biopsy done yesterday. Oh,

Scott Benner 3:50
that's what you meant. So when we okay? So when we were, I don't know that, Melissa, we have to let people know that I didn't know that, because it sounds like I'm like, Oh, how about a book and everything? And they're like, oh, ladies, got cancer, and you're over here dicking around about a book. So you signed up for one completely different idea. But then, as we got on, you said, Look, I signed up to tell a glucagon story. But you know, I think you said the fan since then, and I'm willing to talk about anything, I didn't know what that meant. Usually. I figured that means you kicked a bum out of your house who was pretending to be your kid's father or something like that, but, but, oh my gosh, so Well, let me ask my questions, then I'll get back to this. Okay, okay, through your I mean, God, 94 2004 14 to 40 years diabetes, yep, in October, Wow, congratulations. Through those 40 years. Do you know what your a one Cs were like, is that how you track your health?

Melissa 4:42
Not really. I did track a one CS from the beginning, I don't know, probably eights or nines the first couple of years, then I got into that teenage rebellion stage and got up to thirteens at some point. But by the time I graduated high school. I was back down to high sevens. Okay, had my first seven zero as a freshman in college. Were

Scott Benner 5:08
you trying harder? Did care change? I didn't like the food. Was the food terrible? Food Not terrible? What was your first insulin? You weren't were you regular? NPH, I

Melissa 5:21
was regular. NPH, okay, and I was regular. NPH, up until I was on a

Scott Benner 5:25
pump, which was how much after your diagnosis I was put on a pump in 93 you were regular mph for nine years, yes. So even when faster acting insulins were available, you didn't change to them. Do you know why?

Melissa 5:42
I do not know. It was just never suggested

Scott Benner 5:45
that simple, Yep, yeah, and an eight or nine, A, 1c, for you, then wasn't terrible, right, correct, right? You're doing great. That kind of you got that stuff? Yeah, exactly. Here's Melissa. She's She's one of our star one of our star patients. She's so consistent in the eights and Bo and what was their goal back then? I wonder if I can find that out. ADA goal for a 1c in, let's say, 1987 see if our chat GPT knows that was still it was less than seven back then for most adults with diabetes, right? Okay, I

Melissa 6:28
think my doctors were just don't die.

Scott Benner 6:32
Well, lovely. Do you ever remember getting any actionable advice from them?

Melissa 6:38
No, I don't honestly think that my PD, I my pediatric indo, reminded me of a mad scientist when I went in to see him. So,

Scott Benner 6:46
oh, I had a English teacher like that. Tell me how

Melissa 6:50
he just had the hair that was white, hair that was all over the place, standing straight up, and I just never really connected with him. Interesting.

Scott Benner 7:00
Do you remember him trying? I remember

Melissa 7:03
as a 1011, year old, getting questions of, do you drink? Do you smoke? Are you sexually active?

Scott Benner 7:09
Oh, a playbook. Gotcha. Yeah. How about your parents? Were they involved?

Melissa 7:15
They were involved in that. They gave me the support I need it, but I was always the kid who I got it. Don't worry about it. So when it came to I want, I want to try something like, as far as ice cream sundae or something it was, you can try it, see how it goes. If you don't like your reply checkers, we'll know, do something different next time,

Scott Benner 7:39
what would you have really changed different, like, what did adjustments? What did adjustments? Oh, it wasn't like we would try insulin differently. It was we would try a different ice cream, or a different amount of ice cream, or something like that, right? Exactly I see. But they weren't like any they weren't mad scientists. They weren't like, trying to figure things out. No,

Melissa 7:59
Mom was a general nurse. I mean, she she did med surge for years, and then went into an Office, Office nursing. So she really just dealt with type twos at work. The type one kid was a little out of her wheelhouse.

Scott Benner 8:16
Interesting. Okay, so you keep these, you know, your a one. CS, the way you said you get to college, you don't like the food. It's great. Like, I don't like the food, by the way, where did where along this line? Did you need glucagon in high school? Okay, I think I can blend these two stories together. When I ask you about this, you had to use it a number of times. Is that correct?

Melissa 8:37
Yes, in high school, I used there were like between sophomore and senior year. There were four or five Friday the 13th, and of those, I went to school, one of them, that was the last one, and one of them was due I was out due to a car accident. Everything else was glucagon related.

Scott Benner 8:59
Are you trying to tell me, Melissa, that you had seizures only on Friday the 13th in high school. Yes. How is that possible? I have no idea. That's insane. All right. Now, look, you're an adult. Now I'm going to ask you to look back, right? You weren't like leaning into the Friday the 13th

Melissa 9:17
thing? No, it never occurred to me beforehand. It was after high school all finished, and actually the neighbor sent over a stuffed animal that Friday, like the day after the Friday the 13th that the ambulance didn't come to the

Scott Benner 9:32
house. Wait, wait, wait, wait, oh, oh, because they were like, congratulations on not calling an ambulance on Friday the 13th, exactly. Oh, my God.

Melissa 9:43
We lived in a small town in the middle of nowhere, so the neighbors were very observant.

Scott Benner 9:49
That's hilarious. I feel like they had to go to the store to buy the doll, like there was a whole thing that happened. They were like, oh, so for years in a row, you'd have an like, a god that's on a seizure. Or what would happen? I. My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you, omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once. Omnipod.com/juice box. Get a pump that you'll be happy with forever. You can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juice box. The Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes. The Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox, when you use my link, you're supporting the podcast, dexcom.com/juice, box. Head over there. Now,

Melissa 12:09
a seizure. The first one was, I was what 15 so sophomore year, and apparently I got up from bed, sat at the kitchen table for breakfast and went into a seizure,

Scott Benner 12:21
no different than any other day, as far as you know, as far as I know, no. All right, well, hold on a second. In the Christian tradition, both Friday and the number 13 have separate negative connotations. Friday is considered unlucky because it's believed that Jesus Christ was crucified on a Friday. That's pretty hard on Fridays, but okay, a day no now known as Good Friday. Additionally, the number 13 is Hold on a second senior Inquisition. Wait, what else do you know? Hold on, number 13 is seen as unlucky because there were 13 people present at the Last Supper.

Melissa 12:56
Oh, okay. Well, there's also like the Spanish Inquisition all the

Scott Benner 13:01
like beheadings and stuff from so you've looked into this too. I'm guessing, well, my husband is

Melissa 13:09
a fanatic around crazy stuff that

Scott Benner 13:13
you're gonna say flake when you started, when you were like, I'm like,

Melissa 13:16
give me a hard time about being Christian. That's

Scott Benner 13:20
fun. So the last supper with Judas, of course, the betrayer of Jesus, being the 13th member to sit at the table. Now, another historical event often associated with superstition is the arrest of the Knights temple on Friday, October 13, 13 107 that's what you were talking

Melissa 13:37
about. That's what I was talking about. Sorry, wrong, thing. King Philip

Scott Benner 13:41
the you know, I'm not very good with Roman numerals, but it's an I and a V, which either means four or six. I don't know of France ordered the arrest of the Knights Templar, leading to their torture and execution. This event further cemented the day's association with misfortune. I mean, it associates with me, people's desire to do something unfortunate on a day that people already think about like that, but you can't make yourself have a seizure walk into breakfast. No, there, yeah, okay, all right. Did you think about it like it was a superstitious kind of, like vibe thing after the second time or the third time? No, not

Melissa 14:18
really. Because, like I said, there was the Friday the 13th in there that I missed that was due to a car accident. It was like two days before. So it wasn't actually on Friday the 13th. It was December 11 or something. So so that that

Scott Benner 14:33
one broke you free. You're like, Huh? If there was something to this Friday the 13th thing, I would have had my accident on Friday. That's all I like the way you think seizure happens. Somebody pulls out. I mean, what are we talking about? Like that? Is it even mom

Melissa 14:48
ran to the fridge. Actually, she tilted the head, made sure I didn't hit my head too hard, make sure I didn't choke on the tongue, and had dad get the glucagon out of the fridge. And. And went through the craziness of those old glucagon kits to inject

Scott Benner 15:04
me. Yeah, they bring you out of it. No,

Melissa 15:06
I don't remember anything until I woke up at the hospital, okay,

Scott Benner 15:10
while you were alive. So, yeah, good enough. Then, do you stay in the hospital long? Do you recall I was out by that night. Like, how did they talk about it back then? Because, like, if that happened now, you'd be like, Oh, okay, I see what happened here. I Bolus here for this, and that happened, and then maybe I had some extra but did they talk to you about it like that? Oh,

Melissa 15:31
I guess you're along at your NPH is, is acting too, too much. So we they, I think they backed off my nighttime NPH, after that a little

Scott Benner 15:40
bit. Do you recall if that was unsettling to you not to have an answer

Melissa 15:44
at the time? Now, I was just like, make it stop. How old are you at that point? The first one was in 15

Scott Benner 15:53
and then you had one the next year. I probably had

Melissa 15:56
two that year, and then one the following year, and won my senior year,

Scott Benner 16:01
and they used glucagon for you every time. Yes, did you have a different outcome from the glucagon? Did you ever not have to go to the hospital? For example?

Melissa 16:10
No, I always ended up in the emergency room. I just

Scott Benner 16:14
did an interview with somebody who used G, VO, hypo, pen at work for a seizure, and I said my follow up question was about, like, you know, going for medical care. And she was, now, I went back to work. She's like, she just went back to her desk and kept working. I was like, wow. Well,

Melissa 16:29
you know, when you're in your teens, I guess your parents are a little more cautious.

Scott Benner 16:34
Yeah, the first time it happened to Arden, she's a baby. She was like, two, and we obviously went to the hospital afterwards, but even while we were sitting in the emergency room, I remember my wife and I talking and saying, I don't feel like we need to be here well, but you didn't know any better. You know, I

Melissa 16:49
didn't know any better. But the time post college that I had a seizure, my parents did call the used glucagon, called the 911, and I refused the hospital because I didn't like the outcome. So okay, I didn't like the way I felt after I was talking to my mom about it last night, and she said, yeah, you just refused because you knew what happened, and you told them you knew what happened, and you just didn't want

Scott Benner 17:16
to go. When you say you knew what happened, what do you mean by that?

Melissa 17:18
That last one, it was after college graduation I was I worked a second, third shift, double with the job I was at, and I obviously didn't have the insulin down correctly before I went to bed. Okay?

Scott Benner 17:34
And then what happened when you got to the hospital that you didn't enjoy?

Melissa 17:38
I don't know for sure, because I don't remember testing for ketones. But I'm thinking I because I didn't have they weren't giving me any insulin because my blood sugar was so low. Oh, they I think I may have tipped over to DKA at some point because they had the nausea, the vomiting, the super bad headache.

Scott Benner 17:57
So you think that the the hospital gave you eka by restricting your insulin, correct, and that's why you don't want to go back. I got you Okay? Gosh, I don't want to, like, tease this out at all, like, what is your current health situation?

Melissa 18:13
I felt some lumps in my neck a few months ago, so they've actually been looking at my thyroid over the last few years because I have a couple of nodules, and my dad actually passed away from medullary thyroid cancer.

Scott Benner 18:32
So how long ago? 1617,

Melissa 18:35
years ago.

Scott Benner 18:35
Okay. How old was he? He was 64 and you are how old I'll be 49 okay, and you have Hashimotos. Like, diagnosed?

Melissa 18:44
No, no. They just, they felt something in my thyroid. So they did a ultrasound, they found some the nodules. Yeah, they found nodules, but they were too small to to

Scott Benner 18:55
biopsy. But then, so

Melissa 18:59
I've been going, like every one to two years for follow ups on that, and about a month before my primary care annual exam, I felt some lumps on the right side of my neck, up over around the jaw line. So I brought that up to her, just because those that's actually where they found how they diagnosed dad's thyroid cancer was the lymph nodes,

Scott Benner 19:28
so she did a basic

Melissa 19:31
ultrasound of the of the lumps in the neck, and that those came back un confirmed as to what They were. So they recommended the CT scan. So I don't recommend going for a CT scan on the day, after a holiday and before, before a weekend, because when the results come back odd, you start getting crazy messages and you can't do anything on them. Last Monday, we. Got the referral to go to the ENT, got the went to the ENT yesterday, had my neck biopsied for

Scott Benner 20:06
three lymph nodes. Okay,

Melissa 20:09
so no idea what they are. It may be cancer. It may not. It's still in the craziness, but obviously it's playing some havoc with the stress and blood

Scott Benner 20:18
sugar. Oh, holy hell, Melissa, this is last week. Yeah,

Melissa 20:23
oh, this has all been in the last couple weeks, and the biopsy was yesterday. Oh,

Scott Benner 20:28
my God. So right now you are waiting for the results of a biopsy. Yes, oh, I'm sorry. Oh, well, I didn't know

Melissa 20:37
there's nothing you can do. It's just a waiting game.

Scott Benner 20:39
And oh, Melissa, listen, I'm sorry. Like, you know, in the in the human way, like I didn't actually do anything wrong. Are you freaking out?

Melissa 20:47
I'm freaking out, and I'm seeing it in my blood sugars. Obviously, how much the day after the the CT scan was probably the worst, because my endo actually got results before I got them in my chart. And she's not even in the system where the the where the CT scan was done, and she called me that Friday saying, Oh yeah, you're going to have to go for a fine needle aspiration on the lymph node, and she's not in the system. So how did she get the results? She wasn't the doctor who ordered it. So then I had to wait until Saturday before I got something in my chart saying what the results were, and the first thing they sent was a note saying, contact your PCP as soon as possible, because we found abnormalities, and our radiologists are trained to look for things that aren't necessarily what you were expecting to for them to look for. And then about an hour and a half later, the CT results came into my chart, so I got to read all the craziness of what they were thinking.

Scott Benner 21:53
Oh my gosh. And what did they make? Any pronouncements they said

Melissa 21:58
that the lymph nodes were not a focal point. So if it is cancer, probably metastatic from something either skin or head and neck.

Scott Benner 22:09
Okay, my God, how much other if any cancer is in your family line.

Melissa 22:14
My maternal grandfather had lung cancer, but he smoked

Scott Benner 22:20
up until he was probably 60 years old. Did he smoke through the cancer? No, he was, he was 85 when he passed away. Oh, I see. Okay. Well, he's not a bad run for having lung cancer, that's right. So, oh, my God. So wait, do you have kids? I do not you have you got that? The boy that likes to make fun of you, right? Yes, okay, no kids on purpose. No kids on purpose. Okay, because you hate children. Tell people,

Melissa 22:49
I do not hate children. My husband hates children. Okay,

Scott Benner 22:53
I was expecting you to say no, to go to that completely upsetting for you. The no kids, yeah, that he hates Yeah.

Melissa 23:00
We I went into I went we came into the marriage knowing that there were no expectations for children.

Scott Benner 23:05
Okay, all right, fair enough. I also

Melissa 23:09
had the history of seizures, so I was kind of scared for the diabetes. I wasn't sure what was in the future.

Scott Benner 23:16
When's the last time you had a seizure from your blood sugar? Though, probably when I was working second and third shifts, but years ago, how many years? 20? Oh, okay, you have a more modern glucagon now I imagine I do have G, VO, thank you.

Melissa 23:32
And I am now on a pump. I've been on a pump since, oh, my top story, that pump story, I got Wait, hold

Scott Benner 23:39
on a second, Melissa, you just distracted yourself. That was fascinating. Just let's get to this part first. If there's any truth to this next statement, please just agree with a lot of jubilation. I'm the reason you have jivo. Kaipo pen, absolutely. Okay. Good. Thank you. I just want them

Melissa 24:01
to hear that now. Um, Dexcom, oh,

Scott Benner 24:03
really, please list all the other sponsors who should stay with me.

Melissa 24:09
Sorry, I'm not on Omnipod. I'm on tandem. That's

Scott Benner 24:13
all right. Well, maybe we could get tandem. Do I have anything to do with that? My Facebook,

Melissa 24:18
Medtronic, Medtronic forced my hand into tandem.

Scott Benner 24:22
Oh, Medtronic guys. Okay, well, Medtronic the sponsor, so I know, yeah,

Melissa 24:27
I did stay with Medtronic for 25

Scott Benner 24:31
plus years. That's a long time. Were you happy with it through that time? Yeah, I

Melissa 24:36
think the biggest reason I switched from Medtronic was my reaction to their sensor.

Scott Benner 24:42
What was the reaction? Oh, my God, don't stab me with that.

Melissa 24:46
No, it was. It was only a seven day sensor, and I was lucky to get five days out of it and and massive skin irritation pulling off of skin when you removed the sensor. Holy,

Scott Benner 24:57
hell, like in a horror movie. Yeah. Yeah. Yeah, they're about to release their new sensor, which I

Melissa 25:03
know I my doctor wants me to switch over from tandem to Medtronic when, but I'm re I'm holding off until that newest sensor comes out.

Scott Benner 25:14
So that's super interesting. I know people are like, Scott, you're in the middle of asking her about cancer, but you know, usually I get away from the diabetes stuff to talk about other stuff. And this time you're like, let me talk about my possibilities for cancer. And I'm like, wait a minute. What about this pump

Melissa 25:29
situation? I started it because I said I have a pump story. Oh,

Scott Benner 25:32
yo. You distracted me and yourself. Why does your doctor want you just I mean, are you not having success with tandem? And what is that? G7 or g6 actually,

Melissa 25:41
I'm on my first g7 right now. Okay, I am having success my last a 1c, was a

Scott Benner 25:49
six, two. What the hell are we switching for?

Melissa 25:51
She thinks that I put too much energy into some corrections. So she likes the idea of the lower target rate on the Medtronic at 100 for me, so that I have less mental

Scott Benner 26:04
distraction. Do you feel distracted at times? You do. I mean, did you bring this up to her, or did she tell you this is how you felt?

Melissa 26:13
I had gone to a JDRF thing.

Scott Benner 26:18
I think it's called Breakthrough. Wait, what do they call it now? Break

Melissa 26:21
break through. T, 1d Yeah, or T, 1d break through. They might

Scott Benner 26:24
have wanted to workshop that another five minutes, but okay, yeah, I can't remember it. I said JDRF to somebody in a recording yesterday, and they were like, break through. T, 1d, and I was like, Don't look for me to understand that anytime soon. Okay, so you went to an event. I'm sorry.

Melissa 26:37
And I, I was just kind of going through the vendors, and talked to somebody from from Medtronic, and we were talking about the new sensor and how it was going to look a little similar to the g7 and what the results were in Europe, and also with the Medtronic, with the lower target target, she went and gave me the information, and then I was going to, like, a week later, I had an endo appointment, and she's like, What do you think? I'm like, actually, I was just going to talk to you about that. I have another couple six to nine months on tandem before my warranty is up, but I'm thinking about it. She's like, okay, like, I'd like to try the sensor when it comes out and gets FDA approval before I commit. And that, I think that's going to be the biggest sticking point is, how is, how I react to the sensor?

Scott Benner 27:35
Yeah, well, yeah, but you're gonna give it a try. Yeah. You have any idea? I'm trying to find out if they have approval yet for their new

Melissa 27:45
I think they're forecasting like November, December.

Scott Benner 27:50
Medtronic has received FDA approval for their latest continuous glucose monitor system, the mini med seven, ADG. We know that that was 2023, this is not what I wanted to know. I've been let down by our by our overlords. Should I say, No, Overlord, that's not what I'm asking you. Do you think it would I don't know. Let's try that real quick. No, Overlord, I want to know about the newest CGM.

Melissa 28:18
I know it has European approval, but hasn't been approved in the US yet. Oh,

Scott Benner 28:23
it found it. It doesn't mention that. I called it an overlord though. Metronics latest CGM system is the sim player sync trademark, which is designed to work with the MiniMed 780 G, which I do hear good things about from people. The simplara Sync trademark is a disposable all in one CGM that eliminates the need for finger sticks and over tapes, really offering a simpler and faster, two step insertion process that takes less than 10 seconds. Okay, it's received its CE mark approval in Europe and expected to be available in Europe, blah, blah, which it is, we know in the summer of 2024 however, it has not yet received FDA approval for the use, and I guess it's in the in the works right now. As far as, yes, yeah, this is concerned, okay, also, what you told me, so didn't really need that at all. But you like the Medtronic, you'd like to go back to it. I

Melissa 29:16
wouldn't have an especially if it targets 100 I would be ecstatic to go back.

Scott Benner 29:21
Is it that simple? I don't mean to cut you off, but like, Jenny, always when I asked Jenny, like, if you could change the world, Jenny, what would you change? She was always like, I never understand why someone doesn't make an insulin pump that has the best features from all of the insulin pumps. I

Melissa 29:35
don't like the touch screen on the tandem. I my fingers get clumsy. I'm getting older, I find it somewhat cumbersome, actually, sometimes, because you get out of the shower, and I don't mean to, I take it off pause after I get out of the shower, but I don't mean to initiate a Bolus, and next thing I know, I'm getting a Bolus incomplete. Alert. That's annoying. So Okay. And I also missed the old just fill up the syringe and throw it in the pump, as opposed to fill out the syringe, insert it into the cartridge, and then it's less cumbersome than me.

Scott Benner 30:11
Hey, listen, what's good for you is what's best, obviously, but I love that you're like, it's my big, dumb old fingers. And so I have to tell you I was running behind for this today with you, and I wanted to send you a text to let you know I was running behind. I hope you got that.

Melissa 30:29
I did about 30 seconds before you hopped on. I sent you a thumbs up. Okay,

Scott Benner 30:35
cool. Just for everyone to know, if you've ever received a text from me, it's from a Benner phone, and please, I don't ever look at it. I had to unlock the phone and and I only have like, a four number, like code on it, but I was, I didn't my glasses on because I'm old, and I'm like, I don't know if you've ever had this before, like, you type too many numbers, but you got a wrong one in there. So it's like, not only did you get the code wrong, but now there's an inserted number already, uh huh, and then I go back to the beginning and start over, and so, um, I get it wrong three times in a row or whatever, and the phone's like, I'm sorry. Like, you know, try again in one minute. I was like, what the and I felt, I felt exactly the way you described. Like, Oh my god, I'm so dumb and big and lumpy and old. I couldn't put numbers into the front of a phone. It's exactly how I felt. I just put it down. I styled my hair and said while I waited for the minute, I could feel myself getting irritated. But you know, if I'm messing with a pump every day and I'm having that experience, I'd switch to listen Medtronic again. I think, you know this stuff is all. It runs in a big cycle, right? So Medtronic, Medtronic comes out first with their algorithm. And fair enough, it was on that old CGM people don't seem to enjoy and the algorithm itself was like a first shot. And people are like, Ah, it's not great. And then, you know what happens next? Is it like, is it basal IQ? Maybe comes next. And then, you know, like, people are like, Oh, okay, it shuts off your basal. If you're gonna get low, that's nice. And, you know, then all of a sudden they have control IQ. And now there's Omnipod five, and then there's islet and, like, all this stuff starts piling up. Meanwhile, Medtronic has been working on a new CGM, and they obviously heard people say things like, Don't stab me with that, please. And like, you know, like, try to get that worked out. But I don't know that we ever take the time to and I break Medtronic balls all the time here. Like, even though they're a sponsor, I still will talk about this stuff. They know that it's, you know, I don't think it's a big secret to them, and it's not a big secret to anybody's used it. But they went back and said, Hey, let's fix this. Yeah, now they're going to be a little ahead again, because they're listening to what people don't like about other systems. And they probably said, it seems important to have a lower target. We should probably work on that.

Melissa 32:53
Well, you know, I can't, I can't bad math too much, because they did send me to California for a couple days. Well, that

Scott Benner 32:59
is not, that's not okay. That's that shouldn't be like that. Why didn't you say you don't speak well about people because they're paying you.

Melissa 33:09
But I got to, I got the toy there facility. They actually interviewed me, and I showed them what, what their sensor did to me.

Scott Benner 33:14
Oh, oh. They brought you out to be of like, to show you something that you didn't What did it do to you? They're like, right now, the people who pay me are like, don't ask her what it did. But I'm asking, what did it do?

Melissa 33:27
Just, just the the pulling off of the skin and the actually, like, quarter size bumps under the CGM site.

Scott Benner 33:33
They actually wanted to see it in person. No, it wasn't

Melissa 33:37
so much that they wanted to see that in person. They had some contest going with their first with their first algorithm pump, which I was on, I just kept entering all my blood sugars and putting in the information, and I'm thinking, I'll never win a win a prize. And I got the grand prize for for us, it was a all expenses trip to California for a few days and a fishing trip. And

Scott Benner 34:05
finally, this diabetes thing is paying off. I hear you Exactly, exactly. Well, okay, well, lovely, very nice Medtronic. I know no one's ever taken me fishing, but that's neither here nor there, by the way, if someone offers to take me fishing, like if they heard that just now, like we could take, please, don't I don't want to go. Leave me alone. They

Melissa 34:23
had a couple of different excursions. We picked the one that would fit my husband best, so he would go happily. This

Scott Benner 34:29
guy, he gets to pick the kids. And the excursion he does puts up with my butt. Wait, what's wrong with your butt? Nothing. He just puts up with me. Oh, you. I thought you. I thought you were gonna tell me, look, I have a very strange but, and he puts up with it. But that was not what you were saying. Gotcha.

Melissa 34:47
He just puts up with me. Oh, my God,

Scott Benner 34:49
well please, by the way, I don't want you thinking about yourself that way. What are you doing that needs to be put up with

Melissa 34:56
like I said, I we, we've been married for a while, and. He was around when I did have some of my seizures on second and third shift. So he saved my my life a couple times. And, well, it's lovely, yeah, but

Scott Benner 35:09
you feel like you owe him. He stopped me alive. Hey, listen, if my wife's listening, it'd be nice if you acted like you owed me once in a while. You know what I mean? Just like, I'm not saying every day or anything like that, but maybe, like, once a year, my birthday or something to be, you know, take Melissa's attitude.

Melissa 35:24
We don't do birthdays. We don't do Christmas. We just, we give each other a hand up when we can. Oh, very

Scott Benner 35:29
nice. Okay, well, and I don't need it on a certain day. Kelly, if you're listening, just, you know, hear what Melissa's saying. See how nice it sounds. I'm just, I'm, well, I'm not teasing I probably would like that. I don't expect it is what I'm getting at. Oh, my God. All right, so wait a minute, so you might change back to I confused myself too. You might change back to Medtronic, but what's your insulin pump story? Okay, so

Melissa 35:54
way back in 93 when I was put on an insulin pump, it was like three days in the hospital to get me regulated.

Scott Benner 36:00
That's how they used to do it, right? They'd put you in the hospital to get your pump set up. No kidding, okay,

Melissa 36:05
and my roommate was also being put on an insulin pump,

Scott Benner 36:08
and you're still best friends. I, actually,

Melissa 36:11
I, I have no idea who she is.

Speaker 1 36:15
That was the pump story. Sorry, 17 year old.

Scott Benner 36:21
All right, I thought that was the pop story. Okay, go ahead. So

Melissa 36:24
yeah, you know, just the craziness of how things have changed, where now you maybe have, okay, you get a two hour training with a trainer, and that's it. This was three days off and on with a trainer in a hospital where you don't have your normal activity, so they have no idea what's going on. Which is better? I like the more current.

Scott Benner 36:45
Yeah, makes sense to me. First, the thing they do is they make you sedentary. Yeah, exactly, yeah. What if you're an active person, and now they're setting up your insulin for you sitting around, then you go back to being active again, and boom, drop through the floor low. Yeah.

Melissa 36:59
What do you expect for a 17 year old to be sitting around in bed?

Scott Benner 37:04
Is that not so obvious when they said to themselves, when the first person was like, You know what? There's a lot to train here. Well, bring him into the hospital for a couple days, because this is where the staff is. Because I'm assuming that's what happened. How come the next thought wasn't, uh, what if they're track stars and we're bringing them in and stopping them from running for three days. Do they not know how insulin works?

Melissa 37:24
I don't know if the stuff, if knowledge has changed so much in the past 25 years or what, but

Scott Benner 37:30
I don't know interesting. I mean, it's very interesting. If that your whole story, that they put you in the hospital,

Melissa 37:36
yeah, they, I've never heard anybody else say that they've been in the hospital for being put on a pump.

Scott Benner 37:41
All right, Melissa, listen, I don't love that story. I mean, I felt like something exciting was gonna happen, kind of boring, but nothing happened. Oh, geez, you didn't like you were 17. You didn't break out and steal drugs or anything in the hospital or find a boy your age, and nothing like this at all.

Melissa 37:57
Nah, I got to watch my first pay per view while I was in there.

Scott Benner 38:00
Damn year old. God, damn year old. I know

Melissa 38:05
there wasn't much going on on New Year's Eve.

Scott Benner 38:08
Jesus Christ, wait, they put you in there on New Year's Eve.

Melissa 38:11
A couple I got out on New Year's Day. What a

Scott Benner 38:15
bummer. No, yeah, jeez, that's that. That's the worst part of the story to me. Hey, what was the pay per view? What did you watch JFK with Kevin Costner, yep. Hmm. Why you were 17? Why did you pick that one?

Melissa 38:35
There was nothing else that looked like it was good and it was something my parents would approve of. Were

Scott Benner 38:40
they there for it? Oh, you had to, like, you had to call your parents at home and say, I'd like to pay for a movie on the television. Is it okay if I watch JFK? Yeah, no kidding,

Melissa 38:54
to visit, and I asked them, but yeah,

Scott Benner 38:57
my kid called me an asshole the other day. That's incredible. It was playful and loving and all. And I believe my other kids said to me the other day, well, that's when I'm talking to you idiots. You're like dialing the phone the ring and like the mother, Mama, hello. I was wondering, can I spend some of the family's gold coins on. JFK, do you want to watch? JFK, no, I just thought it would be something you would agree to about that. Well,

Melissa 39:29
nothing else really appealed to me. I don't even remember what else was on, but all right,

Scott Benner 39:34
are you a big Kevin Costner fan to this day? Depends

Melissa 39:37
on what it is, Skippy Field of Dreams, and I'll sit down and watch it. JFK, I'll sit down and watch it. But some of the other stuff, not necessarily. You didn't like Yellowstone. I've never watched yellow stone.

Scott Benner 39:47
What in the hell, Melissa? What have you been doing? It's too late now. He's off the show. I don't know how they're gonna get rid of him, but he's not

Melissa 39:54
there anymore. I can always stream from the beginning. Wait a minute,

Scott Benner 39:57
very quickly, and I'm sorry to do this to other people. What Kevin Costner, movies are no go. I mean, water world. I Yeah, that that was a man, the postman. No, right? Yeah, garbage. Let's say it's just, let's say garbage. What else like do you have, like, a did you go see her? I

Melissa 40:15
don't have a list. You name them. I can tell you Yay or Nay, but really, definitely, I will watch Field of Dreams, hands down and and JFK,

Scott Benner 40:24
are these movies that you've all you've seen, and now you know what you think of or you've you've dismissed some of them because you're like, No, no,

Melissa 40:33
dismiss some of them just based on on description. Okay,

Scott Benner 40:37
really. I like, yeah, okay, all right. I want to remind people that when I was a child, the cable company gave us a box that went on top of our television that we would change channels with. It was revolutionary at the time. It just had a dial on the front and you just clicked it, and it had these, like, never ending numbers, and you could click around. Now, my father paid the cable guy to go climb up the pole and take out the blocker that blocked all the pay channels. So he literally found a guy to climb a pole. And back then, there was, like, a physical thing in the line that stopped you from getting certain signals. So he paid a guy to climb the pole, take the block route. So we got, like, HBO and like all this stuff, we were very poor, so this was pretty fantastic for us. But if you took a credit card size thing, I'm not lying to you, and slid it through the top, between the face of the box and the top of the box, there was a gap, and you slid that credit card thing in there, you could get soft core porn. Remember, I was a child, you had to go to a certain number and then go halfway between that number and the other one and pause it there, and then slide the thing in, and then you would see blurry boobs moving around. They weren't clear pictures. I want you to be 100% clear. And we thought that was like the greatest thing that ever

Melissa 41:58
happened. Well, at least you had cable.

Scott Benner 42:01
That's your response. I love that. All right, ready? We're gonna go rapid fire. Kevin Costner, movies, you just go yes or no, I'm going all the way back to the beginning. Sizzle Beach, USA. Never heard of it. Chasing dreams, never heard he was a night shift. Never heard of it. Francis, never heard of it. Stacy's nights. Never heard of it. All right, let's do three in a row, table for five testament. Shadows run black, nah. Never heard of them. Fandango, American Flyer, Fandango is okay, okay. Silverado, okay. Untouchables, that one was pretty good. No way out, no bull dorm, that was good. Field of Dreams. Absolutely revenge. Never heard of it. Dances with Wolves. I like that one. Robin Hood, Prince of Thieves. Like that one. JFK, absolutely the bodyguard. And everyone's iffy. A perfect world to what was the bodyguard to what? Too mushy. Okay, a perfect world. Never heard of it. Wyatt, Earp, that was good. The war. Never heard of it. Water World, no tin cup. The postman message in a bottle. Say no to all three, right now, go ahead.

Melissa 43:18
No, no, no, no, for

Scott Benner 43:20
love of the game. Haven't seen it? 13 days. No 3000 miles to Graceland or dragonfly. 3000 miles to Graceland. You liked open range? Never heard of it. I am a big fan of open range. The Upside of Anger. Rumor has it, The Guardian, Mr. Brooks, swing votes, no to all of them. I agree. All right, now we're getting to the end. Now, the company Man, Man of Steel. Oh, the company man. I haven't heard of that one, me either. Man of Steel. He was Superman's dad, right? I do like Superman. I didn't like that one. Okay, all right. Jack Ryan shadow recruit. He's pretty good in Jack Ryan movies, three days to kill, Draft Day, black or white. Never heard of him? McFarland, USA criminal, no. All right, here's a movie I really enjoyed, Hidden Figures. That was good. Molly's game. They haven't heard of it. It's a good movie. All right, let's say, let him go. We don't know. All right, okay, I stopped there, and then horizon just came out. But apparently, from what I read, he and his wife and three other people went and saw it. But I wanted to see it, but I don't know what to tell you. All right. So, so, Kevin Costner, you're saying, yeah, so it didn't turn you into a Kevin Costner fan. No, but it didn't turn you off of Kevin Costner Exactly. The reason I went all through this is because when Arden was diagnosed, we had this portable DVD player, and she watched the same movie over and over again on the portable DVD player. Or in the hospital sky high. Do you know the film? I do not. It's a, like a Disney kind of superhero thing. Okay, I don't think it was a Disney movie, though, but it had that vibe. Kurt Russell, oh. Kelly Preston, the departed Kelly Preston was in it anyway. She watched it over and over and over again. She loves the movie. My wife hates it. My wife has this like visceral reaction to the movie, like it takes her back to the hospital, and she really doesn't like it.

Melissa 45:31
Well, you know, it wasn't a diagnosis thing. It was just something to kill time for something that I wanted anyway. So I guess there's no bad memories with it. I didn't watch it over and over and over again. It was a one time three hours. Well, yeah,

Scott Benner 45:45
you had to pay for it. If you wanted to start it over, you had to pay again. All right, just to fill out this part, what is your favorite movie? Oh, gosh, what's a great watch? Many movies really, do you watch television? I watch television, but it's if you and what I watch, what do you do with your free time? I'll read, reading. Oh, books. Yes, so much reading. I don't enjoy it. I'll tell you that I don't like the sitting around part. I don't know why I don't like reading. I'm just I'm such a bad reader. When I was doing when I was doing press for my book that I wrote, The PR guy pulled me aside, and he goes, Stop mentioning that you don't read. And I was like, okay, like, but I don't I'm like, isn't it more impressive that I don't read and I wrote a book. And he's like, I see how you're thinking, but that is not what people are going to hear. And I was like, Okay, fine. Nevertheless,

Speaker 2 46:39
I did audio books, right? Yeah, that makes

Scott Benner 46:43
more sense. Let somebody talk it to me into my ears. So tell me right now, like I feel like I'm almost distracting you today, like I feel like I'm part of like the good work that is you not having to pay attention to the fact that you're waiting for results on something. How long is it going to take to get the results? Like, when do you get everything they

Melissa 47:01
said, up

Scott Benner 47:02
to a week a week. Yeah, holy, you and your husband have spoken about this. Yeah. What's our level of concern? Is he like, doing crunches trying to get back into dating weight? Or like, is like, are you guys, like, it'll be okay? Or like, dating, wait, wait, what'd you say

Melissa 47:20
he's too lazy to try doing crunches to get back into late dating week? I got, I got some insurance premiums yesterday, and I looked at him and said, Oh, I guess I should definitely play pay these today, huh? Or before they're due. But is that working? I don't let it lapse, yeah.

Scott Benner 47:35
Is that where you're I mean, I guess I'm being serious. And I want to ask you, like, what's this, like, this spot right here. What does it feel like?

Melissa 47:43
I think the fact that they were jumping so much this week or last week, when the results came in, like I had, I saw I got the results from my chart. So Monday afternoon, I called an ENT to get a biopsy, and it was originally scheduled for August, so that was really because they pushed crazy. Yeah, so my doctor actually called the next on Tuesday. She called me on Tuesday and was trying to go over everything, and she's like, I'm gonna send an urgent referral for ENT and oncology. And if you don't need oncology, we can cancel, but I you definitely need the ENT. So I told her I had it in August, and she's like, I'm glad you got it within a month, but let's see if we can get something sooner. And yeah, it was a month sooner. Or so, so

Scott Benner 48:41
that that startles you a little bit, because whatever they saw, they were like, yeah, we can. We'll squeeze her in. Yeah, no, that makes sense. But

Melissa 48:48
the EMT yesterday said, Well, it's only three nodules, so it's not terrible. So I don't know. I guess I'm just kind of, did

Scott Benner 48:57
they give you any idea about what steps are like if it's not cancer, what is it? If it is cancer, what do you do? No, no, just hey, go home and

Melissa 49:06
they can't. They said, Yeah, they can't tell me prognosis or what treatment will be until they type it. The ENT yesterday mentioned lymphoma, which kind of scared me a little more than some of the skin cancer type stuff, yeah, but

Scott Benner 49:22
I don't know, we'll see, wow, this such just a, it's like an, what is the word I'm looking for? Like, it's, there's nothing to do, yeah? And so what are you doing? Are you keeping yourself busy, or are you actually, like thinking about it and making yourself upset?

Melissa 49:39
Fourth of July weekend, I was really getting myself upset, but since I you know, today is the first work day that I've had off since everything started, so I'm probably going to be a little more uptight, but I do have a meeting this afternoon, so that'll take my mind off. It a little bit. Yeah, so we'll see you've

Scott Benner 50:01
been talking to family. I heard you say you were speaking to your mom. Do you usually speak to your mom? Oh,

Melissa 50:05
yeah, I my mom knows everything that's going on. I let one of my brothers know because I kind of nervous around my nieces. I don't I've got a trip coming up to see them next month, and I don't want to say something wrong in front of them, so kind of

Scott Benner 50:22
talk it through with your brother first. Yeah, what was his reaction? He's

Melissa 50:27
concerned. He's like, let me know what I can do. We may be making it. We may be making the trip instead of you, but he's like, we'll we'll deal with the kids and what happens? Happens?

Scott Benner 50:39
What about your mother? How old is she now? She let's see. Sorry, you have to do the mental math. You're fine. 77 and she lost her husband like 15 years ago to something that's scarily sounding like what's happening to you. So how did she respond?

Melissa 50:58
She's nervous. She's let me know if I need to make a fight up. That's her response to everything. Let me know if you need me to fly up.

Scott Benner 51:06
Can she fly 77

Melissa 51:09
she can is she? She chooses to fly as since dad passed, she's been a world traveler. She's been to on an African safari to Greece,

Scott Benner 51:19
all over. Oh, my. She's like, Oh, this guy's finally gone. I can go do some stuff.

Melissa 51:25
They did some trips together.

Scott Benner 51:27
Okay, good, yeah. So right now, it's a lot about, like, what can I do for you? Tell me what to do, yeah? I mean, it's a feeling of of helplessness for everybody, right? Yeah, you're the only one who has to lay on the other layer of like, you know the rest of it, although it's not true, I guess people who love you start to imagine the world you know, with and without you, and that's terrible, because you're thinking about the same thing. Great. How about your husband? Is he like being goofy? Is he doing like, Boy stuff and like, acting silly, like it's a big or is he very serious about it?

Melissa 52:05
He's kind of take it as it comes. Type guy. Since we've been married, both of our fathers have passed away. His mom's passed away, his sisters passed away, his brothers passed away, so we've dealt with loss. So he's just kind of, we'll see. We'll take it as it comes. I'm so sorry.

Scott Benner 52:22
First of all, I don't know if I've said this yet, but I'm sorry you're going through this. It's, you know, obviously horrible. And I hope you get a fantastic outcome. I hope they're like, Oh my God, you have bumps. Those are just bumps. Yeah, well, just, well, just, do you like them? Or you can keep them if you want them. But my real question about this is because you've a couple of times talked about living in a smaller place, right? Like, I don't know where you are geographically. I'm not really asking you to tell me, but are you in the best place to have cancer dealt with?

Melissa 52:52
I am near a very good hospital system, excellent. I'm

Scott Benner 52:57
glad. Like, I'm a bit of a snob. I live on the east coast, like, so I live around some of the, like, best cancer centers and, like, you know, like that exist. Like, so is it good for your area, or is it good it's nationally ranked? That's what I want to hear. Okay, great. And then we're gonna go in there and get a plan together and enact the plan and go correct so your life could, like be a whirlwind in a week. Yeah. What happens if treatment impacts your employment? Are you looking at how to take medical leave and stuff like that?

Melissa 53:35
I have spoken with our company nurse. Our company is amazing because, well, our site of the company is amazing because we have like, four or five type ones on site, and the company nurse is aware of everything that's going on, as far as that goes. And I spoke with her, and here's what we offer. We offer FMLA concurrent with a short term disability, and the short term disability goes up to six months, and then after that, you long term disability kicks in for another six months. So

Scott Benner 54:10
you could possibly have a year covered where you can get some side of an income. That's that's good to know. I mean, as soon you know the company nurse because of type one, you've probably had interactions with her. You literally have to walk into an office and say, Hey, Becky. I'm finding out right now, but it's possible I might have cancer.

Melissa 54:31
Yeah, yeah, just because I know personally, they've gone she's gone through

Scott Benner 54:36
it with other people, some other people, right? But I mean, for you, you're having to tell your brother and your mother and your husband and the nurse and like, I'm trying to figure out what it's like to walk into a room and have to say something kind of so, you know, heavy to

Melissa 54:55
somebody I started it with. Can I make an appointment to talk to you about. FMLA, it was an email. FMLA, they're looking at a possible cancer diagnosis. Everything's still in in testing stages. They know it's all in testing. They they know nothing. So she came in, she I walked into the appointment, and she was just there as a ear to listen.

More than anything. How about for you, though it was

nice just to get it off my chest, because there's some things you don't want to say to people. So I was a little less guarded, I

Scott Benner 55:31
guess, okay, that was kind of the thing I was wondering, like, is it cathartic just to say it out loud? It is it is okay, because it feels less insane every time you say it, yeah, okay to Don't bottle it up. Exactly, okay. That's what I was wondering. Because almost like, you know, do you remember being like, I don't know, like you're young, and something happens to you and you just, you feel weird, but you like, you ever have a friend who, like, breaks up and they're like, with somebody, and then they run around telling everybody their sad breakup story? I thought, story 1000 times, and then you realize they're just trying to, like, work through it, yeah, yeah. It almost felt like, and I feel like I'm doing that honestly. That's kind of what it felt like to me, and that's what I was wondering about. Like, are you basically, like, on a like, hey, Melissa, may or may not have Tor, but so that you can make yourself not right with it, but maybe you know, right. Wow, yep. Did you ever have anything as this series happened to you? Personally? To me? Personally? No, no, this is your first time. Well, oh,

Melissa 56:37
I guess there was the crazy head scare when I was having the migraines a year after my dad passed away, and they came back with an MRI. And while I was in the MRI, saw the technicians jump up and sent me to the neurosurgeon

Scott Benner 56:51
from that and what was that? It was just

Melissa 56:55
ended up being that my genes mutated so that the bone doesn't reform correctly in the base of my skull.

Scott Benner 57:04
Oh, okay, but it looked odd on the MRI. Yeah, I gotcha. Well, that was good news. You're like, oh, is it just, is it just my mutation? That's fantastic. Thank you. Yeah. Are you growing something like a, like a reverse horn, or anything like that. Or did they not say actually,

Melissa 57:24
it was a lack of growing bone.

Scott Benner 57:26
Oh, oh, like a gap. No kidding,

Melissa 57:29
yeah, it looks like my skull has osteoporosis. Basically, I have a lump

Scott Benner 57:33
on the back of my head, like on my skull that I've had my entire life. And now this is crazy, but now that I've lost weight, my head has gotten smaller, and it's now obvious where it wasn't before. And I was sitting with Arden the other day, and she just kind of like, she was like, scratching the back of my head, and she goes, what is on your head? And I was like, I was like, Oh, that's my skull. It's always been there. I said. I told her. I said, my brain got bigger and it needed to go somewhere. So it had to make, like, a little bubble for it to go for it to go into. But it's so crazy that, like, of all the weird things, like, I wonder how many people's skulls have weird little malformations, I guess is what I was wondering. But all right, okay, so what do I do for you? I mean, we're like, at the end of our thing, like, I'll ask you, like, did we talk about everything you want to talk about? I want to make sure I didn't skip anything for you. But like, is there something like, I know there's something great content. Scott, that's it. I just have to make a podcast. Oh, okay, I can do this.

Melissa 58:33
There are so many days I end up really and I'll be at work listening on my earbuds, and just enjoy the stories, or I'll be running a test, and I have tears forming in my eyes and I can't look at anybody based on the story, but the content is great. You you always have the great personality. Go with it. And I love the community. I'm glad

Scott Benner 58:57
you're in the private Facebook group. I am good. Good. Well, if you need any support, that might be a place to go. Yeah, I know it'd be a weird thing, though, to tell would it be a weird thing to tell a bunch of strangers I don't know like part of me thinks Yes, and part of me thinks no, but I guess that's a very personal decision. My

Melissa 59:17
Facebook postings on it have been very minimal. I told my workout group on Facebook, we're all type ones, and we work out together. But other than that, nobody else on Facebook knows you

Scott Benner 59:30
have a digital workout group. Yeah,

Melissa 59:33
that's cool. We do our own thing, but we kind of throw Hey, hints, tips, how to control the blood sugars with the

Scott Benner 59:41
workout. You know, one of the most rewarding things that happens to me that I never expected was, like, people will send me pictures of they're like, Hey, this is my friend. You know, we both have type one. We met because we listened to the podcast. It's so nice, like when people meet each other like that in real life, or even. You know, can form a group online, and, yeah, it's really wonderful. Yeah,

Melissa 1:00:04
no kidding. Well, I told him that we have like, four or five type ones on site at work, and I work in a lab, that there are currently two people on at one point, there was three, and the third person had type one, and we were both on the same pump. And

Scott Benner 1:00:19
that feels good, right to meet somebody in that situation. Yeah, you can bounce things off of if it ends up that you have cancer, do you think you'll look for community around that as well? I don't know, because

Melissa 1:00:33
to me, cancer, diabetes is something that I have control over. I can control how much insulin I give. I can control how I work out. I can control what I eat. I don't know if I have the control over the cancer. Yeah,

Scott Benner 1:00:46
no, I understand. I'm gonna ask one last question. Is that okay? Do you ever have any feelings of like, Why me like diabetes now this other stuff, like, do you ever think

Melissa 1:00:58
I was young, but and I did when my dad was passing away, but as of right now, no, okay,

Scott Benner 1:01:05
would you, oh, that was too morbid. I actually thought of a question I'm not asking you. Never mind. Okay, well, that's even weirder not to say it. Yeah, okay, sorry, sorry, all right, I'm sorry. Then I'm sorry to say I should just ask it. Is that? Is he there? No, he's not. Oh, okay. If you were to pass away at any point, do you look back and say, life well lived. Feel good about it. Do you have things you think, oh, I should have done that? Are those things popping into your head right now? There

Melissa 1:01:38
are things that I wonder if I would have been better suited at like as far as career wise goes, because college was pre med but I chose not to go to med school. I decided to do lab work instead of dealing with people, because

Scott Benner 1:01:55
when you say dealing with people, it makes it sound like you've made the right choice.

Melissa 1:02:01
Well, not in a bad sense. I enjoy people. I enjoy making, giving them a little bit of a ray. But I still, you know, I, I guess, in order to do that, to do stuff like that, I'll just, like when I go to the gas station and I'll hold the door for somebody. Doesn't matter who they are. They may be younger or older, I don't care. I'll just hold the door. Maybe it'll give them a smile.

Scott Benner 1:02:26
When you think about that question, you went right to like, who I am in my working life,

Melissa 1:02:32
that's all I really have. I mean, I've got my nieces, and unfortunately, I don't get to see them as much as I'd like.

Scott Benner 1:02:38
And like I said,

Melissa 1:02:41
I still wonder if I would have been better being a doctor, being a doctor, going into nursing, something like that. You think you could have accomplished it? Definitely nursing. I'm not sure about med school, right? Well, that was still I was in all in the ups and downs of learning the pump. And

Scott Benner 1:02:59
do you think that this is a thing where you'll, like, a month from now be like, Wow, I can't believe I had a cancer scare and I don't have cancer. I'm gonna go to nursing school or a year from now, like, I can't believe I had cancer and I I beat cancer. Like, I'm going to nursing Do you think you'll make a big change?

Melissa 1:03:15
Probably not, just because there's always the cost of nursing school,

Scott Benner 1:03:20
the financial aspects of it, yeah, I understand. Okay, well, I mean, it's fair to say, I hope you send me an email and tell me how you're doing and anything you want me to add into this recording. You have months and months to send me an email first. So if you have something that you want to add at least six, at least, what? At least six months? Oh, for me, I see what you're saying. Yeah, yeah. No, no, you have at least six months until, like, your thing will come out. So if the if you have any new information you want to send, send it to me. And literally, this will stop. People will hear ads, and then I'll, I'll read your information at the end of this. Okay, thank you. Can you hold for me for a second? Stay on the line, sure. Thank you.

The conversation you just heard was sponsored by Dexcom and the Dexcom g7 learn more and get started today at dexcom.com/juicebox, a huge thanks to Omnipod, not just my longest sponsor, but my first one, omnipod.com/juice box. If you love the podcast and you love two plus insulin pumps, this link is for you. Omnipod.com/juice box. Are you starting to see patterns but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more if you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode One. 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 so I've received two follow up emails since I've recorded with Melissa, the first one says, Scott, thank you for letting me share my C word scare story as I'm going through it. I realized after we ended the recording that when you asked about my current health, I immediately jumped into my current drama. Here are the answers to some of your normal autoimmune questions. As far as I know, there were no other autoimmune issues in my family. However, as I hear more and more about Lada, I wonder if my grandmother on dad's side had Lada instead of type two. She was diagnosed type two around the same time I was type one, and I remember her taking insulin soon after, and excuse me, soon after, I started on insulin. However, I hit the jackpot with the auto immune issues among along with type one diabetes, I have Raynauds, PCOS, unconfirmed celiac. I have the genetic markers, but I refuse to the gluten challenge endoscopy, because of how ill I will get if I eat gluten. The update on my biopsy says no cancer cells detected. She's very excited. Thank you again for a great podcast. Let me share my drama with you and the listeners. She then follows up again. I wanted to give you another update to this. Besides no cancer cells were detected, what I didn't comprehend at first was that there weren't any cancer cells detected because only about 500 cells were gathered, and a definitive result requires approximately 100,000 to one to 1 million cells. So I opted for a full lymph node removal of the affected lymph nodes, and in office procedure using lidocaine that came back without lymphoma detected, but it was noted that lymph nodes showed extensive necrotizing gram, oh, gosh, granuloma, itis a lotus granuloma. Bo, okay, inflammation with no detected microorganisms, without the microorganisms detected. The thought was to send me to a rheumatologist to test for additional autoimmune conditions. Testing for these came back inconclusive. So the next step is infectious disease specialist in January of 2025 which is when this is coming out. And so the craziness continues. Melissa says, but I am not as high strung as the day we spoke in July. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, you.

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Scott Benner 1/9/25 Scott Benner 1/9/25

#1402 Caregiver Burnout Series: Part 6

Isolation and stigma: Discovering new forms of support through online platforms

Raising a type 1 child while questioning her husband's diagnosis.
How quick action saved her son from severe diabetic complications.
The fight for clear answers when doctors won’t listen.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.

Erica forsle is back with me again today for the sixth part of her caregiver burnout series. This is the last part for now, but we're gonna probably be adding to it again in the future. If you'd like to hire Erica, she's available at Erica. Forsyth.com, please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. If you're looking for community around type one diabetes, check out the Juicebox Podcast, private, Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast. Type one diabetes on Facebook. This episode of The Juicebox Podcast is sponsored by Omnipod five, and you can learn more right now at my special link, omnipod.com/juicebox dot com, slash, Juicebox, Erica, we are going to finish up the caregiver burnout series today. I appreciate you doing this with me. That's right. Thank you. Of course, Episode Six, look at us making time we're doing well.

Erika Forsyth, MFT, LMFT 1:56
What's this one about? So this six burden focuses on the isolation and stigma that caregivers or even people with diabetes might experience. Navigating this might feel similar to how we discussed the previous episode as you navigate social experiences post diagnosis, but this one really the lens through which we're talking about this isolation and stigma can occur even in, you know, a phone call with the family member and very small, nuanced interactions with other people. Through the research that we've we've also seen in our own lives that because of the intensity of the stigma and the isolation that people experience, one of the benefits has been the online, the social, you know, online platforms that have certainly been growing in the last 510, years, significantly. So do you want to lead? We get, do you want to lead with the quote, the parent quote,

Scott Benner 2:54
I get to read the parent quote. This one's very talky, meaning, this is a direct quote, but it's obviously like conversational. So stick with me. I'm gonna do my best to put my to put their emotion into it a little bit. I don't think people truly understand how hard it is on us, on a physical, daily, everyday thing, people don't get it. And I think because we are coping and we're fine, people just think, Oh, it must be fine, but it's really hard, and they don't get that, whereas, if your child had cancer, people, they drop off meals, and people would be running around after you, thinking, Oh you poor thing. It's terrible. But they're like, Oh no, it's fine. I hear that from a lot of yes, you hear that, yeah, from a lot of it's the comparison that gets made a lot, which is, I think what they're really saying is people know cancer is bad, right? So they have that overly empathetic What can I do a response? But when people hear diabetes, they think, like, oh, you take a pill, or you just don't eat a cookie or something, and then it just, you know, like, Oh, it doesn't sound so bad. And then you don't get the same response, and then you get that's, that's isolation, right? Yes, yeah, okay,

Erika Forsyth, MFT, LMFT 4:07
isolation and not being understood, right? They say, you know, they don't understand that the physical, daily, everyday thing of managing your child's diabetes. Oftentimes, I even saw this, you know, a lot of comments yesterday online during our, you know, World Diabetes Day of, oh, at least you know you have a diagnosis like, now you know what's going on, which, yes, there is that kind of relief. Okay, my child's been sick for so long. Now we know there is that kind of immediate relief, but then, as we know, also immediately comes the shock of what it actually means. And that's where people who don't know diabetes misunderstand what it is that you are doing for your child on a moment to moment basis. Yeah, like,

Scott Benner 4:58
it's not like, great. You're right, at least. I know now, because you hear people come on the show all the time and talk about that, like, oh, it was horrible not knowing. And you're like, well, at least now I know, yeah, that gets rid of the part where it's horrible not knowing. It doesn't fix anything else. It just, you know, that part's over. You know,

Erika Forsyth, MFT, LMFT 5:14
yes. So this kind of, this constant, either the stigma around what the other person perceives diabetes to be. You might experience that right, like, you know, all the myths that you and Jenny have talked about, you know, the myths of diabetes. Did you give your kid too much sugar, etc, etc, you can feel stigmatized based on the other person's perception of what diabetes is and why your child has it, and then consequently misunderstood around what it means to keep your child alive or keep yourself alive. And I also hear, not only from, you know, family members who are maybe trying to do their best to support but don't quite understand it, are also, you know, when you're at pickup and you're trying to connect with another parent. They I know

Scott Benner 6:04
what you're gonna say is making me laugh. Okay, go Google. Say it. Say like, when they it's like when they complain about some banal thing in their life, like, it's the worst thing that ever happened. And you're like, I haven't slept in six months. Like, yes, I look at my kid and I constantly think, is it about the die? Is that the same as having to rush to soccer practice and make dinner doesn't feel like it, because we also play soccer and eat dinner like, Yeah, I know, trust me, I know, yeah, yes.

Erika Forsyth, MFT, LMFT 6:31
And so again, those you know, those other parents are maybe they're trying to relate, you know, and trying to empathize and try to share, like, you know, we've got hard things going on? Maybe they're just having a conversation, but obviously where you are in your journey and how you're hearing other people's issues, it's okay if it's hard, right, that if you're if you're running that line in your mind, like, I'm just trying to keep my kid alive here, so that's okay. But that also can contribute to that feeling of like, oh my gosh, no one really gets how hard this is, and that sense of isolation.

Scott Benner 7:05
It's the medical thing to the seriousness of it that stops you from being able to step back and go, Oh, they are trying to connect with me. They're just, they don't have all the details. Like in any other walk of your life, you'd be like, Oh, thank you. Like, you know, you'd feel it, and you'd be like, Oh, they're they're trying to empathize with me. But instead, it just feels like, What are you talking about? I think that when you have diabetes or your child, does your perspective on the world levels up, like whatever, that low level stuff that people worry about, you don't have time for that anymore. Like that just it's gone. Now I'm worrying about bigger, more immediate problems. I can't sit around and pontificate about whether or not, you know, Scary Spice is really in love with whatever. Like, you know what I mean, like, whatever, right? What is that? What is the modern version of that? I don't care if Kim and is arguing with her sisters, yes, yeah, my kid cries when I put a pump on them. So I I'm done with that part now your perspective, you just level up your perspective and that person, and I say too, thankfully that person doesn't have that. I'm glad that they don't feel the weight of what I feel. But it is hard not to be jealous about it. Sometimes I think that's probably the wrong Yes, today's episode of The Juicebox Podcast is sponsored by Omnipod, and before I tell you about Omnipod, the device. I'd like to tell you about Omnipod, the company. I approached Omnipod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet because the podcast didn't have any listeners. All I could promise them was that I was going to try to help people living with type one diabetes, and that was enough for Omnipod. They bought their first ad, and I used that money to support myself while I was growing the Juicebox Podcast. You might even say that Omnipod is the firm foundation of the Juicebox Podcast, and it's actually the firm foundation of how my daughter manages her type one diabetes every day, omnipod.com/juicebox whether you want the Omnipod five or the Omnipod dash, using my link, let's Omnipod know what a good decision they made in 2015 and continue to make to this day. Omnipod is easy to use, easy to fill, easy to wear, and I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year, there is not enough time in an ad for me to tell you everything that I know about Omnipod. But please take a look omnipod.com/juicebox I think Omnipod could be a good friend to you, just like it has been to my daughter and my family

Erika Forsyth, MFT, LMFT 9:46
to not be jealous, and then to as we talked about last episode, do you then make that decision to try and communicate how hard it is right to say, hey, it actually is really, really challenging. To do what I'm doing to keep my child alive, or keep their their sugars in range, and let them do all the things I want them to do, because then, if you don't, you feel like you're not recognized for the amount of work that you're doing. You're not doing it for like, oh, pat on the back you're doing you you want that. You just want people to know how hard it is, because it's really hard. And that's, as we've kind of talked about this issue many times before, that's kind of human nature you want to be seen and validated for the struggle, the pain that you're carrying, so that you feel supported and you don't feel as lonely in what you're carrying. Yeah. I

Scott Benner 10:34
mean, we're obviously social creatures, right? And when you don't have that feeling, you feel alienated, then, you know right away, like you're on the outside of the of the pack. I guess is the way to think about it. I need you to understand why I look tired. It's not because I'm weak. It's not because I can't do this the way you do it, like I'm a good parent too, you know, I've got more of a burden than you might also. The other thing is, you don't know what the other person's burden is either right, like, you know, they've got stuff going on as well. I don't know, the belonging, connecting, empathy, mirroring back and forth, it's all really important. But a lot of times you just lose your fuse for that conversation. And I think the explaining, some people could feel like, if I start explaining this, I'm just going to sound like I'm complaining. I also don't want to seem weak or like I'm complaining, either you think,

Erika Forsyth, MFT, LMFT 11:27
right, or a burden to other people, right? Like to and are they really going to get it? And why do I need to tell them this? You know, all those things can be running through your mind, and are they really going to get it anyway? So I might as well just not share it, right? And then you still land in a place of isolation. It

Scott Benner 11:45
kind of boils down to when someone says, How's your day, they probably don't care. So, you know, like somebody says to you, how's your day, and you start telling them they're going to be like, oh geez. Like, that's enough. I was being polite, you know. And and they really aren't wait. Diabetes is that thing you do need to live with it to understand it. I mean, in the same house, like, I think if you drug anybody into your house for a week and then let them back out, they'd go out and start complaining for you. They'd tell everybody you're not giving Erica hardly enough credit. Like she's married, she's got two kids, she's got a job, she does all this stuff. She still has diabetes. I saw her. I was in her house for a week. I saw her change her pump twice. I saw her change her CGM. I saw her get low. I saw her get dizzy. I saw her feel foggy, like she started yelling about nothing, like, you know, that's none of that was even her fault. It's crazy. I don't know how to count carbs. I couldn't figure it out I was there for a week. If you had an advocate on your side, like that, I

Erika Forsyth, MFT, LMFT 12:37
was just wow. I feel really validated. Thank you with that. Were you there last week? Eric

Scott Benner 12:41
and I have only ever been together, like, steadily, for like, an hour and a half, but I still, I know your pain well.

Erika Forsyth, MFT, LMFT 12:46
Actually, I Well, I'm debating whether I was going to share this story, but I feel like I'm just going to because, okay, when I had my high episode recently, for the first time in my I think that I can even remember, after 34 years, started vomiting due to a high due to kind of random, out of the blue, high blood sugars, everything was fine until I wasn't and I felt ill for many hours, baited. Do I go to the ER? Do I not? I ended up being able to ride it out at home. But it was probably, you know, five, six hours of really not feeling well the next day, the three people I reach out to are I email my doctor, I call Scott. Thank you very much for being there, of course, and my brother, who also has type one. And obviously my husband was there to support me. He doesn't have type one, but he watched it. I didn't need to tell him about it, and I didn't tell anybody else. I didn't tell any good friends, until days later, I told one good friend, and I went through this process of, do I need to tell people I was really ill, even not feeling well? The next day, I had to cancel some things. But it's that process if you want to reach out and feel connected with someone who understands. And I am grateful to you, Scott, for being there and helping me, you know, walk through possibly what happened. And then my brother, who understood and shared, and then he shared a story recently of having a random low that was pretty scary for him, and that was it. And then later I told a good friend of mine we were going to walk. And I found myself in this space of like, do I want to keep going and telling her why and how and how bad it was to kind of fully help her understand and for this close person, it was worth it to me to to go into depth. But I think, as we've talked about before, too, finding kind of those, those circles of people, when is it worthwhile to share the depth of how hard it is to care, give or live with it? I think

Scott Benner 14:38
I've seen in the past too, where people make that decision, like, here's a person I'm going to share this with, and then when that person's not understanding or receptive, it's heartbreaking. I've seen that happen to people a lot like, I am going to share this with a very good friend who ends up just treating it flippantly or it makes them uncomfortable to hear about your struggle, which is. Probably more we all can't go to therapy. Trust me, everyone would have to be a therapist for us all to be okay. We'd all need one. But if you open up to a close friend who you think is gonna have your back and understand this, and they, for some reason, don't, it's tough. I've seen friendships end over stuff like that, you know,

Erika Forsyth, MFT, LMFT 15:18
absolutely or even family members, right kind of pulling back and withdrawing as a result of your attempt to try and under explain what's what it's like, yeah, so we're kind of already transitioning into, you know, what can you do with this feeling of isolation, of stigma, of kind of not being totally you know, your your work is unrecognized and underestimated, and it can be it can be challenging, right? Like, based on what we've already talked about, you you don't want to be a burden to other people. Can you trust the other person? Are you naturally an extrovert? And you can confidently, and that's just kind of how you are. You're able to talk and process, and you can understand where your needs end and the other person needs begin and end. Are you introverted and feeling like, if you are sharing with other people? Does that take a lot of extra effort, energy, risk? Does it feel scary? So just wanting to to note that like, based on your past experience with being vulnerable and also your personality can contribute and exacerbate or help those feelings of isolation.

Scott Benner 16:25
What do you do if you have a personality that's not going to let you make that connection, but you still need that, right? You still need to do that for yourself. How do you find a person to do that with?

Erika Forsyth, MFT, LMFT 16:35
If going publicly or in person feels too scary, you know, I see more and more people posting anonymously right in the in the face, in the Juicebox Facebook group, which I think is fine if you feel, if it feels like, Oh, this feels too scary to share who I am or my identity, seek help. Keep it anonymous. Seek help in you know, whether, if you can't, go to therapy and other support groups, keep your screen off, right? Those are kind of more the virtual tools that I'm thinking about. If you lean more introverted, hopefully you have found, over time, those one or two safe people that you can trust when

Scott Benner 17:14
Facebook offered the anonymous posting in the private group, at first, you know, we were like, we can't let this happen, because it's going to open people up to getting scammed, right? Like, you know, if you can be anonymous, yeah, and scam somebody. And I was like, thought about it for a while, and then I came to the conclusion you did, which is, it's going to be extra work, and it's, it's, it's going to suck, like, it's, it's extra moderating work, but I think it's really important, because I kept imagining like there are some things I read and I think, why does this need to be anonymous? I can't, from my perspective, understand why this needs to be anonymous, but from their perspective, it does. So who cares that now this allows them to say it out loud. I think it's a great tool, because of that. Yes, it really if you can't walk into an in person meeting, or you can't or won't go to therapy, and you still need to say it. And the posts are, I mean, you see them too, right? Like, I just want to share this success that I had with somebody. Like, you're the only people who are going to appreciate how hard it was for us to get the standard deviation from 160 to 120 Yes, excuse me, I from, I don't know why I use that number. The the average blood sugar from 160 to 120 not standard deviation. And you can see, like they're just thrilled to tell somebody. I don't even think they care if anybody replies. They just want to be like, hey, world, look, figure this thing out, you know, or I'm struggling with this thing. Yeah, right. Just saying it helps,

Erika Forsyth, MFT, LMFT 18:37
saying it out loud, and not necessarily needing the response. And that takes courage, right to be vulnerable and knowing in the Facebook group it's already it's a safe place, because, you know, you can go do that, and that's what to be expected. It can feel really scary doing that, you know, quote, in real life. And so I wanted, I think it can feel just going back to like, you know, I feel like it's, it's a privilege, a that I could reach out to you when I was going through this DKA like experience. And my brother, who has type one, I have that, like, that's my little, you know, community. And not everybody has that.

Scott Benner 19:15
How was it helpful to you when we spoke? Because I felt like I was just listening and mirroring and, like, I brought up a couple of things, maybe. But like, it's not like you were like, Oh dear, oh my, I don't know what happened you had diabetes for like, what do you get diabetes? Like, 35 years

Erika Forsyth, MFT, LMFT 19:30
or 34 years? Yes, yeah. But this was a first time experience.

Scott Benner 19:35
You were I was listening to you process what had happened to you, and then what were you doing? You were looking for a sounding board that you could trust to see if you were thinking about things correctly. It was that what it needed to

Erika Forsyth, MFT, LMFT 19:47
be. Yes, I wanted to be, not only validated, validating that it was, it was a scary experience because I hadn't gone through it before, and I thankfully got that from you and my doctor and my brother. And then also wanted. To learn, how could I have done things differently, like have ketone strips on hand?

Scott Benner 20:06
Yeah? Erica owns a ketone meter now. Yeah,

Erika Forsyth, MFT, LMFT 20:10
yeah, to kind of learn and say, when this happened, maybe should I have gone this way or that way? So to be without having to explain to you or to my brother or my doctor what DK is like, or what you're experiencing, right? There's already that known entity. So to have that conversation with you, you have a lot of experience hearing people's stories and obviously, Arden's life journey. So to have that from an experienced there's no shame from any of the people that I connected with, also, like you should have done this. Why didn't you do this? Right? Yeah. And I think sometimes when you're scared, not really knowing what to do, and this happens a lot at the beginning of your journey with diabetes, but also 34 years in, something totally random happens, and it can feel scary,

Scott Benner 20:56
sure. And talking to me is nice, because I'm like a therapist that curses, yes, all the listening, none of the nice stuff that sometimes makes people uncomfortable.

Erika Forsyth, MFT, LMFT 21:08
Oh well, I think I mean just the validation and the support and the education. And I was really grateful for Scott for your time in that. And I think if you're listening to this and thinking, Well, I don't have a brother or a family member with type one, or I don't have Scott's direct number, or my endo isn't that supportive. I just want to validate that if you're here thinking or feeling that, and there might be somebody else out there, whether it's in the Facebook group or somebody a smaller group, but we're going to get to some of these different entities where you can maybe connect and find those two or three people to be in a text group with. Yeah,

Scott Benner 21:44
no, you just need somebody honestly there. I've seen people do it all different kinds of ways. Go over some of the things that you think are great, and I'll fill in things I've seen that maybe aren't on this list. Okay,

Erika Forsyth, MFT, LMFT 21:53
so, you know, as as we were saying, you know, to take that courageous step, to be vulnerable, like I didn't know, just go sorry. To go back to my brother. Example, I shared this moment with him, and then he was able to say, oh my gosh, me too. I just had this scary thing happen with the low and my wife, you know, when he shared his story and we talk diabetes, sometimes, not all the time. And so then I was able to listen to Him and hear him. And so there's just this beautiful moment when you are taking that courage and to be vulnerable in a space that feels safe, that often gives the other person the opportunity to be vulnerable as

Scott Benner 22:29
well, so be ready to offer what you're asking for in return. Possibly, yes, it's

Erika Forsyth, MFT, LMFT 22:35
beautiful. It's a beautiful exchange. Obviously, we know the Juicebox Facebook group. You guys know that it isn't a great resource and safe space, and as we talked about before, I think in the previous episode, I've seen people say, Hey, I live in such and such ZIP Code who wants to get together this Sunday at the park. So to kind of bring that larger group into a smaller personal perspective or group environment is really helpful, touched by type. One has monthly events. And they actually have, I don't know this is probably going to air after, but they have their dancing for diabetes show that, which is an amazing connection. And they also have monthly local events. You're just my type. They are mostly la based, but their whole mission, and I'm going to read this from her website, is to create a world where all individuals with type one diabetes feel empowered, supported and connected. She Laura is the director, creator of this group, and they have a lot of La meetups, but people from different caregivers and children and adults, most of their in person meetups are in the west coast. In LA, I think she had Seattle, she had New York, and then there's one coming up in London. I believe in January.

Scott Benner 23:56
Yep, I see it January 11. This should be out before then. Okay, yeah, I don't know the organization, but just, you're just my type.com,

Erika Forsyth, MFT, LMFT 24:06
yes, yes. Also on Instagram and probably Facebook, you're just my type, yeah.com, the next one is, let's see type one together. They have a diet buddy list, kind of similarly to what I see doing happening on the Facebook group. They're like a, they're trying to create, like a national registry list, I guess, if you will. And so you can go on, I think it's free, add your address and also learn to see who people you know, which families are near you. Those are some of the main ones that I know of. Before we go into this next point about the positive messaging. Were there other groups or things that you thought would be helpful

Scott Benner 24:49
if you or a loved one was just diagnosed with type one diabetes? And you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place. Art that series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl. Beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. Well, I know people listening who have extensive WhatsApp texts set up with people with diabetes, which is awesome, right? Like hundreds and hundreds of people in a whatsapp chain, and they just talk about diabetes stuff. I think if that's the thing, you could get started with a handful of people, I think that would be a big idea. Big thing to do, too. I mean, you could do it with text messaging, obviously, if you wanted to, but just a place where you can drop in and say something that somebody might quickly get back to you about it. My private Facebook group is, it's so big as far as membership and posts go that you would think like, Oh, my post is gonna get lost. But it just usually doesn't happen. There's always somebody online, always somebody looking. And I think a text chain, if you can find the people, is another way to accomplish that. So WhatsApp text chains, beyond that, I have to tell you, I'm just so head down, doing the thing I'm doing. I don't know as much about other things that are going on as I probably should. I would

Erika Forsyth, MFT, LMFT 26:27
say, you know, even attending the local, you know, breakthrough, T, 1d summits, if you can connect with people there, or any of the conferences that you attend, finding and connecting with like a small group, right? So, and I know caregivers who have you know their diabetes caregiver text chain, just like your child might have their diabetes text chain, to have kind of that maybe more immediate result that you're you might be looking for a response, yeah? Also camps. Well,

Scott Benner 26:57
camps a great idea, if you can find a great diabetes camp that's a the people who have a good experience at diabetes camp have an awesome experience at diabetes camp. And I think there are some people who just aren't camp people. Or sometimes find a camp that's, you know, doesn't end up being great. But overwhelmingly, from what I hear from people, they they love their camp experience. I was going to say, though, if you go to a local event. Breakthrough two on the event, I would just not caution you, but remind you that you're probably going to meet a lot of newer diagnosed people. So, yeah, you're looking for a sage advice. Kind of person you're gonna you might be a lot of people standing around, going, I need help. You know, me too. What a nice way to meet people who are newly on the path you're on, because at least you're all kind of step by step, you know in sync with what's happening right now, and then you guys could grow and learn together too, which would be awesome, yes,

Erika Forsyth, MFT, LMFT 27:47
and that can often be part of your own healing journey, as you support maybe a more you know, newly diagnosed family, even if you're six months a year ahead of them. I often hear of parents saying, Wow, I didn't realize how much I already learned and knew, and we were just there. It feels like yesterday, but it was a year ago. And then you kind of have that ability to gain that perspective also, yeah.

Scott Benner 28:10
Now I say all the time, when I meet people who are really struggling in the beginning, I say, look, here's some fundamental tools that will help you. Here's some places to learn about more. And a year from now, you're going to look back and not recognize yourself from today probably sounds like bullshit when I'm saying it to them, but a year from now, you look back and you go, wow, I have learned so much. I didn't realize you don't even know what there is to learn. So you can't even imagine making such a leap, you know? But then when you do, if you are, yeah, it's funny. You put it the way you did, because I used to describe what I do. I'd say to people like, look you're looking for someone ahead of you who's already been down this dark path. Knows where all the holes are, all the sticks to trip over and can, like, just look back at you, shine a light and go, Oh, look out. Look out for that. Like, step over that. Go around this. You might want to do it this way, and you know, you'll get you get to that point two, so you could be that person, or somebody in a Facebook group, in an in person group, you could show up at an event and stand up and share your experience. I think there's an unending number of ways, once you're in the ecosystem with other people, everyone's story is really valuable at that point.

Erika Forsyth, MFT, LMFT 29:19
You know, yes, absolutely. And if you are able again, it might take some courage, some effort, some time. And I know when you're exhausted and feeling like, how could you do one more thing to then find and reach out to other people and create this group? There's so many benefits. And I just thought it would be interesting to share this recent study. They took groups of parents, and they were going to give one group of parents just positive messaging about parenting in general, and then the other group was going to get specific diabetes messaging about management. And encouragement. And so they looked at the and then when they got messages via text and Facebook Messenger, yeah, basically the parenting group that received the diabetes specific positive messaging reported higher levels of disease management, more satisfaction, and their perception of burden was also decreased that they reported. And so I just thought this was such, you know, I think it's so great to have all these the Facebook group, your Whatsapp group, your text group, your in person support group, to validate how hard it is, because that helps us decrease that isolation and stigma, right? Like, that's really important, but also to have these positive messages to send to one another randomly. Like, for example, one of them was, you know, being a parent of a child with type one diabetes. This is 24/7 365, job. Be kind to yourself. You're doing great, just randomly. You know, sharing that with your with your group, with your family, whatever is your support group, can be really effective. And you can also do this for your child. I

Scott Benner 31:10
have an example this from today, so I'm in an unfair advantage. A lot of people send me notes, so I usually have, no matter what we're talking about. I normally have an example from the last couple of days. So I will leave this person's name out of it, but let me read this and says, I've been a member of this group, and they're referring to the private Facebook group for the podcast for a little while, but I have never listened to the Juicebox Podcast. I've never been a podcast person, and usually my ADHD doesn't let me sit and listen to something for a long enough time, but I've seen so many people share about how the podcasts help them to take control of their diabetes, so I decided this week to give it a chance. This week, okay, my daughter is five, was diagnosed recently. Since then, it's been a constant roller coaster of highs and lows, and I felt like we couldn't get a grip on her blood sugar at all. And then this person includes two photos their Dexcom clarity reports. It says this first picture is an average data from the past two weeks time and range, 59% average glucose, 170, the second one is just over the last two days since I've been listening to the podcast and making changes that are suggested in the show. Time and range is now 93% and the average glucose is 116 so this person says, I don't want to do this. It's not for me. I have ADHD. I'm not good at podcasts. I don't list the pie as all the reasons in the world not to listen, right? But being in the group, and then this is my point, watching other people share what's been working for them. They finally go, all right, you know what? Let me try to overcome myself here and try this anyway, and look what happened for them. And that's why I'm always a proponent of people sharing what they're doing that's working. Because there are so many people who can't, for any number of reasons jump in. And I've heard the argument, you make people feel bad when you share how well you're doing. I make the argument you are a hope for that person when you're sharing. I think eventually somebody says, My God, they're doing that. I could do that too. I watch it pay off all the time. You don't want somebody to feel bad like you don't want somebody to look at a 116 average glucose and think, Oh, I can't get this accomplished, but at some point you got to do something. And so I say, go out there and share. Be kind about it. Be understanding about it. Don't be very Don't be like, Oh, look what I did. Like, it's not boasting. It's like, there's a way to do this. Like I did it. Like you could do it too. Anyway, I'm a big fan of that idea, and

Erika Forsyth, MFT, LMFT 33:41
she was sending, you know, a positive message to you, but also just and she chose to, I don't know if it was of those public or private, but like, what a great moment. It was private. No,

Scott Benner 33:54
no, no, this was a public post. Oh, okay, okay. I mean, in the private group of public posts, but I'm not giving anybody's details, right? But that person, like, I didn't read the end of it. The end of it is, if you have doubts about the podcast, erase them. It really does help. Like, so now this person realizes, Oh, I've been helped. I'm gonna go help somebody else. And, like, it's nice to tag me and say, Thank you, but that's not that post is, if you're like me and you think this is impossible. It's not. I just did it and I didn't know what I was doing two weeks ago. That's pretty awesome. You know what I mean? Like? So you can be that person listening right now. You can be that person for somebody else. And, you know, yes, that's all I that's how I think of it, instilling

Erika Forsyth, MFT, LMFT 34:36
hope, very important. And she, and she was being vulnerable, right? So she led with vulnerability, and that took courage, and she did something new, and then is instilling hope. And I think that the positive messaging, whether it's you know, publicly in that, in the Facebook group, or privately to your you know, your small debt. Diabetes text chain or to your child is so powerful. And again, I It's okay to validate how hard it is, that's half the work, right? But then to also acknowledge, wow, this is you guys. You're doing a great job, and we need that, you know? We need that encouragement and hope.

Scott Benner 35:17
I also think we do a very good job in the group of exactly know how to do it, because it's not like we're enforcing rules. It's just, I think I have set the tone for what the group is. And so when it was smaller, it took on that vibe of, you know how I am, which is to say, like, I want to be supportive. We're not here to like on people or tell them to do anything wrong. We're not going to tell them how to eat. We're not going to tell them how to manage their diabetes. We're just it's the supportive atmosphere the group built up around the idea of being a supportive atmosphere, and then as it got bigger, somehow it held on to that. I still don't know exactly how, but that doesn't mean that sometimes people don't come in in a bad mood, they don't come in at drunk o'clock, they don't come in when their blood sugar is real high or real low, or they don't see something that tears at their belief system so heartily that they have to they fire back a little bit, right? And people's communication skills can, you know, can vary, and so sometimes somebody's not trying to be harsh, but it feels harsh. Or someone, you know, there's a lot of different things that happen, but we try very hard to deal with those things in the light of day. We don't just, like, remove your like, it's not like, Oh, that was shitty, and just remove, like, you jump in and say, Hey, were you trying to say this? Because it feels like you're doing that. You know what I mean, like, and if you did, I think if you just take out the WoW at the beginning, like, you know, maybe you know, don't let people feel like you're judging them. This would be really valuable. And I'm going to tell you why this is important, and I say it out loud all the time, because there are more people here lurking around than are typing in this group. And those people are waiting for their moment to be that person from that note. They are waiting to jump and go like, I can do this. I'm going to do it. I'm going to do it. And I don't want them to spend six months getting to that point where they're like, Yes, I'm going to do it. And then on that day, they get on Facebook and see you waving your shit stick all over the place and decide to go back in their hidey hole for another six months because the world's a scary place, and I don't want to get involved today. That group is about helping people. That's the only goal it has. It's the only goal I have for it. It's the only goal I have. And if you're going to do something that's going to stop people from being helped, then you don't get to stay right, like so it, but you got to just be nice. I'm so scared they'll leave, and then they don't get to have the the, you know, the experience that this person just shared with you from a one? I mean, imagine a five year old kid. Can I be honest with you? This person posts this thing about that kid, and I read it and I go, Oh, that's cool. Podcast doing what I expected to do. Facebook group worked the right way. They were here long enough they saw it, they jumped in. They learned they're doing better. This is awesome. I'm not cold to it, I just see it a lot. So I was like, All right, great. It worked for them. And then I don't know what happened, I think it was sitting here editing, and it was still up in front of me, and I clicked on the person's picture, and it was a husband and a wife with like, two or three young kids, and I got so filled up, I thought, oh, that kid's gonna have a better life, you know, and they're going to have a better life, and they're going to sleep better, and they're going to be happier, and, you know? And then I just got, like my I got very So Erica. The reason I say this is my eyes filled up, and I want to ask you a question, because you're a professional. Are we at the end? Because I can ask

Erika Forsyth, MFT, LMFT 38:36
my question at the end, you have more. I always had one last point resource. Then I'm going to ask my question. Go ahead, I but we're interrupting your your beautiful, heartfelt story. I just wanted to point to which I think we've done before. Also, if it's feeling impossible to find your group or your people, you're reaching out. Obviously, therapy is a great way to do that, and the ADA mental health directory has a list of people who either have diabetes themselves, they have experience working with people with diabetes, and they also have had to take a behavioral, behavioral diabetes health class or a course to be approved to be in this directory. In the past, it has been you could only search by zip code, which has prevented you from finding people increasing the search?

Scott Benner 39:22
Yeah, close to you, but not in your zip code. Yeah, yes. Hopefully by

Erika Forsyth, MFT, LMFT 39:26
January, they will have a renewed filter just to search by state, so you hopefully will have more people to access to go through that list. Just wanted to share that my.diabetes.org/health-directory

Scott Benner 39:39
Yes, but ADA mental health directory if you're Googling Yes. Okay, so here's my question. My girls took me to that movie with the boy that used to be Spider Man and the girl from Black Widow. Again,

Erika Forsyth, MFT, LMFT 39:53
I will not be able to

Scott Benner 39:54
hold on a second. I'll figure it out for you. Hold on a second. Do you think if I typed in boy? I. Who used to be Spider Man and the Black Widow girl. Let's see if I come up with it. No, but in 2023 an eight year old boy in Bolivia was bitten by a black widow spider because he wanted to become spider man. Get out of here. Is that real? Oh, my God, Dear God, that's not okay. Look at this kid. Oh, that's so, yeah, yeah, little neck. That wasn't gonna work. Okay, hold on a second. Instead, I'm just gonna, I'm just gonna go to Rotten Tomatoes. Where is this move? I mean, they took me to this movie. It was just recently, yeah, yeah. It was like, Jesus. I don't know I I'm embarrassed. I saw this movie, like, a week and a half ago, and I don't remember the title of it, but I did. Why can't I remember the title of it? This is terrible. Also, why is it not where I want it to be? How come nothing works when I need it to work? Damn it.

Erika Forsyth, MFT, LMFT 40:49
It wasn't mo I can start listing Moana too.

Scott Benner 40:55
These are epic. This is a cancer movie, honey. You're gonna get to it just like that. Everybody had can't, like the people like cancer in the movie. What is this? What is it? What was it called? It had the word time in it. All right, I'm getting closer. My brain is coming back. I sound like I'm 1000 years old. Hold on a second. And it was Andrew Garfield.

Erika Forsyth, MFT, LMFT 41:13
I'm getting to it. Oh, we live in time. Is that what it's called? Well, I don't know. That's just a movie that has time in it.

Scott Benner 41:22
We live in time. Yes. Andrew Garfield and Florence Pugh, okay, I'm not gonna ruin the movie for you. Florence got cancer. Okay, you know you're like halfway through the movie, and it turns out Florence has the same kind of cancer that killed my mom. So it hit me pretty hard, right? But I bucked up. I held myself together. And I just want to say that I was in a theater. It was me and 350 ladies and like, five guys who were just too good of guys not to come. You know what I mean? Like so. But I just want I just

Erika Forsyth, MFT, LMFT 41:52
would have been okay. Had you cried, you would have been okay. No, no,

Scott Benner 41:55
wait. So a couple of times to the movie I get, like, filled up, where I will describe to you that my eyes were glassy, but water did not go down my face. So when the movie ended, by the way, this is what happened when I saw the person's picture their family. This is why this came up. So when the movie ended, my lovely daughter, my wife, who just are dying to make fun of me for crying, because they know I cry in movies, they turn to Me. Movie ends. You would think people would say, Hey, are you hungry? Do you want to get this to say, we have to go to the bathroom? No, right on me. Did you cry? Right like that? Okay, so I say, No, I didn't, but I got filled up a number of times, and my wife goes, Yeah, that's called crying. And I said, No, I don't think so. I think crying is when water drips down your face and you go like that a little bit. I didn't make that I didn't make that noise, and no water went down my face. So you're a professional. Was I crying? Yes, I was

Erika Forsyth, MFT, LMFT 42:49
right. Your tear ducts, your tear ducts, were releasing tears into your eyes. You just worked hard on not blinking.

Scott Benner 42:56
Erica, it's okay. Let's say it wasn't natural and normal. They said the same, oh, good, good. But I don't think I attribute crying to the noise you make when you can't breathe because you're crying. Does not everyone cry like that, like when they're real? I don't cry like that. Often. I

Erika Forsyth, MFT, LMFT 43:14
see a lot of people who silently cry, really, just, yeah, just your tear, your eyes get watery, and then they just, they slowly

Scott Benner 43:22
pour out. Okay, well, I'll apologize to them, because then I was crying. I mean, if you say and you are professional, you went to college and everything, also, we never talk about it, but you went to a really good college, so I believe in you. Oh, thanks. So anyway, when I clicked on this person's picture after they sent me this note, I got real. I got filled up. I was like, and not for the reasons why cynical people would think it's not because, like, oh, I helped them. I didn't have any of that thought. I just felt really happy for them. Because I know where this can go, and I know how much easier it is if you find other people to share the burden with, and you ask for help from people who are ahead of you on the path. And so I just was like, Oh God, good. It worked for them, because I see too many people who resist that, right? They resist this thing we've been talking about for the last 45 minutes, and then they either never find their way to it, or eventually, begrudgingly get drug to it and end up saying to themselves, I wish I would have done this sooner, you know. So I wish you would all just go out there and any of the things that Erica brought up that might help you find connection or ideas it is really, really worth your time, and I think would alleviate the burden that you feel as a caregiver. Yes, yeah, okay, well, go do nobody listens to me. So, I mean, you know, just go help yourself, damn it well.

Erika Forsyth, MFT, LMFT 44:45
And I think what that what you were just reflecting upon the story as you're seeing the picture of the of the family, the little girl you were, you felt filled up because you also had the joy of giving like you through your work. Through your podcast. I know you're not saying this to get these pads on the backs, but like that's the gift of giving that feels so joyful. And I think even in this space of when you're struggling and feeling so unrecognized, you're so exhausted, the stigma you're experiencing is so hard. It feels Hey, it's physically and emotionally difficult to reach out and say, I need help. Can you please help me? I want to, I need to be vulnerable, but that feels scary. But then, in return, you might also be able to reciprocate and give that to somebody else. And that is so powerful. So it's if that helps you move through that space of like, I don't want to, I don't want to be a burden to somebody I don't want to, you know, share all the stuff that feels so hard they're never going to get it and they might not, but also, you're giving them that gift of your vulnerability so that they might be able to respond to,

Scott Benner 45:51
yeah, you don't realize I'm in a unique position to share with you that that recharges me, right? So then when I get back up next week to do this again, like, this podcast been gone for 10 years, like, at some point you think I might just get up and go, Hey, you know what? I'm gonna go get a different job. I don't feel that way. I know this works. I have it set up in a way that it works. And there are going to be new people tomorrow who need it again. And there are going to be people who found it two years ago, who I hear from that they they lose their way again in the future, and then they find their way back through this. This place is a, you know, it's a it's a touch point. For some people, after they've been here, they can come back to it. And so you guys give me the energy and sometimes excitement that I need to make the podcast, and not that I don't like talking to people like that. The truth of it is, if you told me I had to have a conversation with a stranger every day for the rest of my life, I would just easily do that. I would love that, even if they didn't record it. Actually, if they didn't record it, be much better, because I could, you know, enough to be as appropriate and so, um, you wouldn't have to filter. I would. I could just curse way more is what I'm saying. So like, because the cursing is, then the guy's gonna edit it out, it takes time, you know, like, I pay by that minute, like, you know, I don't want to make it sound like I don't want to do it. I absolutely want to do it, but I'm still a person, and I still don't feel well some days and some days I have other stuff going on. And, by the way, I have a kid with diabetes too, and, you know, like, that doesn't become, you know, that doesn't just go away. So I get this feedback from people, and I'm like, Yeah, this is valuable and worthwhile, and it makes me feel better as a human being, like, I don't know another way to say I used to tell people that I was not a Chicken Soup for the Soul person when I was growing up. And as a matter of fact, if you've listened to this podcast and thought this is a good guy, if you would have met me when you were like, I was like, 23 you would have been like, this asshole is not going to grow up to help people with like, diabetes. Like, that's not going to happen. He seems like a prick. I did not have my head in the space at all. And yes, I got into it to help Arden, but I stayed into it because of everybody else, right? Like, she's been helped. Arden is good, and I still learn about diabetes through other people. And even that's not the whole thing, like, the whole thing is just, I somehow, I don't know how created. I don't know, like, a like, a planet of like, where the gravity pulls people in, and people who need it find it, and then they're allowed to fly away when they don't need it anymore, and that's hard to do, so even though you brought up other places that are great, that help people, but those places could work for a decade and never achieve the mass appeal that the podcast has made. So while I have this year, I want to do as much good with it as I can. But the reason I said that is because all of you can go do that thing, you know? I mean, if this podcast is the sun, then you guys could the earth. I don't know a lot about astrology, not astrology. What is it? When we talk about planets, obvious. I don't know a lot about it. But if this, oh my gosh, if this podcast is, is Earth, you guys could be moons all around it, like doing, that thing on a smaller scale for five people, 10 people, 20 people at a time, and that would be, trust me, you would feel the exact same way I feel when someone came back to you and said, This thing you shared with me really helped me. So go, go out in the world and do nice things, please. And it'll get rid of your burden too, which is what we're talking about today.

Erika Forsyth, MFT, LMFT 49:19
We're talking about planetary science. That's Is that what it is the study of planets, planetary science. Scottie

Scott Benner 49:26
slept through that one too. I just want to let you all know that you've been listening to a podcast for 10 years from a guy who barely made it through high school, I mean, and it was because I was asleep, like on my desk, face down, in case you're wondering, just slobbering on on one of those blue notebooks. They don't make any more that, like jeans, you know, what a year old? You know, yes, yes. Not as old as of course. But anyway, nearly are we going to keep doing this? Do you think there? Do you think there's more content for burnout? Or do you think this is going to be a nice, little, contained series?

Erika Forsyth, MFT, LMFT 49:57
I think this could wrap up. You know, this, the. Like the caregiver, the burden, the burnout. I'm sure there are more hot topics that we did not address, but my hope is that these themes kind of encapsulate all of what you do experience on a minute to minute basis. But certainly you can let us know, well, I'm

Scott Benner 50:17
sending you back into the world Erica then to have another great idea for the podcast. Thanks so much for doing this. I appreciate it.

Erika Forsyth, MFT, LMFT 50:23
You're welcome.

Scott Benner 50:33
Omnipod five sponsored this episode of The Juicebox Podcast. Learn more and get started today at omnipod.com/juice box. Links in the show notes, links at Juicebox podcast.com, are you starting to see patterns? But you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure, once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you. Wrong way recording.com. You got a podcast. You want somebody to edit it. You want Rob. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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