The author of Six Until Me, Kerri Sparling, isn’t blogging any more, but she’s still looking for stories of connection and community built around conversation
For 14 years Kerri wrote a daily blog about her experience with type 1. She put aside SixUntilMe in 2019. We’re going to talk about her new book, what she thinks about the online community these days and what’s next.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
Who would volunteer to spend a weekend with a bunch of teens with type 1? A bunch of people who’ve been there! We’re talking about teen retreats – and what even adults can learn – about the power of connection.
Patrick Mertes has lived with type 1 since he was a child. If that name sounds remember, he’s one of the climbers from the 50-in-50 project where he and a friend climbed the highest peak in all 50 states in 50 days a couple of years back. He also runs a fantastic family and teen retreat in North Carolina.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
Stacey's son spent the summer away at regular, non-diabetes sleepaway camp. 8 weeks managing all of his own care, with no remote monitoring. You had a lot of questions, including how he manages overnight lows:
Benny is 17, he was diagnosed just before he turned two and, as usual, he has a lot to say. He had quite a few adventures at camp, but everything turned out okay. We get his take on independence, responsibility and a glimpse into how a teen with type 1 thinks.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
Jeff Ryan has lived with type 1 for more than 50 years. But he also has what’s called an essential tremor. Part of the treatment for that included using powerful magnets, which made thinking about diabetes tech.. a little different for Jeff. He talks about being diagnosed as a toddler in 1971, and how treatment for both his tremor and his type 1 have changed.. as well as the power of community for both conditions.
He recently got his 50 year Joslin Medal and shares how a photo of him in front of a Christmas tree in 1971 played a role. That photo was a bit of a mystery to Jeff for a long time, since he was diagnosed in October.
2001 story about Jeff's brain surgery: https://www.webmd.com/brain/news/20010822/pacemaker-for-brain-effectively-stops-tremors
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
Wearing an insulin pump can be a huge help when it comes to managing diabetes, but finding a place to put it can be difficult. Women’s clothing in particular, isn’t great for storing stuff. Erin Calhoun-Dulaney has lived with type 1 for 40 years and she finally got fed up enough to create her own product. We’ll talk about Skirt my Pump, her experience with T1D and her career as a Hollywood publicist.
Stacey also has information about Tandem's Mobile Bolus limited roll out. Click here to find out more and sign up.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
It’s always a privilege to talk to one of the Joslin Medalists. This week you’ll hear from Laurie Harper. She was diagnosed as a toddler in 1955 and will mark 67 years with type 1 later this year. She shares what she remembers about her early years with diabetes, how her family adjusted, the technology she started with and what she uses now.
The Joslin Medalist program recognizes and studies people who’ve lived with type 1 for at least 50 years. Laurie tells us more about the medalist program, about aging with diabetes and she takes a look back at how different the management was almost 70 years ago.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Learn more about the Joslin Medalist Program
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
Lauren Bongiorno was diagnosed with type 1 as a child and growing up, she showed every sign of success. She was a division one athlete, playing soccer in college and achieved the lowest A1C her endo had seen in a college student.. but while her care team celebrated that 5.7, she was miserable.
Lauren shares how she took control and got that happiness back. She’s now a Diabetes Coach at her company, Risely. We talk about some common pitfalls, the pressure to be perfect and what coaching really means.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
-----
Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921 Where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, Lauren Bongiorno was diagnosed with type one as a child and growing up she showed every sign of success. She was a division one athlete playing soccer in college and achieved the lowest A1C her endo had ever seen in a college kid. But while her care team celebrated, she was miserable.
Lauren Bongiorno 0:41
And I was sitting there and it was like literally an out of body experience because I'm watching like the doctor, high five, my mom and my five each other and I was like, I'm not happy, I'm not happy.
Stacey Simms 0:52
Lauren shares how she took control and got that happiness back. She's now a diabetes coach. We talk about some common pitfalls, the pressure to be perfect and what coaching really means. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. As I'm taping the intro to this episode. I am like you sifting through some FDA approvals these seem to be coming in fast and furious now or at least as fast and furious as the FDA does anything. But after a very long logjam, you know, this is all stopped up by COVID. It really seems like things are moving along. So to that end, this episode will not focus on tandems mobile bolus, which was just approved, you know, bolus by phone or the ever since CGM 180 day where approval. Those were the two biggies over the last week. And I am going to focus on them in upcoming episodes ever since should actually be next week. And Tandem a couple of weeks after that. As always, if you'd like to get your questions asked please join us in the Facebook group Diabetes Connections, the group if you're not on Facebook, no problem. Shoot me an email Stacey at diabetes connections.com. I have my own set of questions. But I always want to hear from you. And your questions are always fantastic. So please send them in.
But there is a lot more to diabetes than technology. You all know that. And I wanted to share Lauren Bongiorno’s story, because I think this really resonates for parents of kids with type one. And for adults with diabetes, nobody's harder on us than we are on ourselves, right and the pursuit of perfection. It's just gonna mess you up. I'll let Lauren share her story. But just for background, She is the CEO and head coach at a company she founded called Risely that's a bit of a play on how in diabetes arise isn't a good thing. You know, an arrow up on your CGM, a higher A1C , their website says type 1 diabetes has given rise a bad reputation. But we think it's time we reclaim it. I think that's really clever. And I think this is the first time I've spoken with a health coach on the show. So we talk about what exactly that is, and why somebody would choose to work with a coach along with a medical provider. Here's my talk with Lauren Bongiorno.
Lauren, thanks for spending some time with me and my listeners. I'm so excited to talk to you.
Lauren Bongiorno 3:33
Oh, thank you so much for having me on. Stacey. I'm so looking forward to this conversation. Yeah, I
Stacey Simms 3:38
feel like I've we've connected and I've seen you, you know, all over social media. So I'm, I'm really excited to kind of hear more of your story and share your experiences. Because just the little bit that I know, I feel like you're kind of the embodiment of why perfect doesn't always work out with diabetes, if I could say that.
Lauren Bongiorno 3:56
Yeah, I think you can say that. And it's so interesting, because I think that if there's one thread of my entire life that I can really look at, it's this striving for perfection, and then getting too close to perfect and realizing, Oh, wait, this is not what I wanted. So definitely applies to diabetes, for sure.
Stacey Simms 4:17
Well, let's back up and explain what we're talking about here. Let's start closer to the beginning. You were diagnosed at age seven. Do you remember any of that?
Lauren Bongiorno 4:24
Yeah, I definitely remember it. I remember it was the day after Halloween. I remember my mom being on the phone with my dad in the kitchen and I had just had a tantrum and I think she was trying to figure out if it was a seven year old tantrum or if it was a something's wrong tantrum. And I had been losing a lot of weight and when you're seven years old, and I was really like skinny as a child and you lose, you know, 20 pounds, there's definitely some signs that something else may be going on and I was drinking so much water and I remember hearing my mom, you know, talk to my dad and have them deciding To take you to the doctor, so I went to my regular pediatricians office, and I was sitting there. And the distinct memory I have is of my mom and the doctor on the other side of the door and my mom hysterical crying. And if you know, my mom, she's like the strongest woman, she is a like, so independent, so strong. And I don't think that was the first time I ever heard her cry, or at least I remember her ever crying. So I was like, Oh, something is wrong. And then I ended up in the hospital, stay there for a few days. And when you're a kid, and you have everybody around you crying and saying, it's going to be okay, and you're so strong. And you also at the same time, don't really understand what that means. It sets you up for an interesting and interesting path and an interesting life. And definitely now looking back a lot of things that I think I didn't realize was going on in my mindset, and in my own personal development and relationship with diabetes.
Stacey Simms 5:53
And so fast forward to a story that you tell on your website, which is when you were in college, and kind of realized that this was not sustainable. But I'm curious between seven and 19. Were you that model diabetes kid?
Lauren Bongiorno 6:05
Yeah, that's actually the phase I don't talk about as much. And it's interesting, because I think it's the phase that most people and most of our clients that rise they relate to. And so that stage from seven to 18 really was, it was me just being in a very reactionary mode with my diabetes. So it was like, Oh, your blood sugar is high. Shoot, let's correct it and get it down. Oh, shoot, it's low. Alright, let's drink some juice really fast. So you can get back on the soccer field. And it was very kind of ping pong lead. And I never fully felt like I had the energy or the mood that I think that I could have in hindsight now, because I didn't realize like how much that Ping Pong was impacting me. And I also really didn't care. Like for me what was most important and for my parents, and what they instilled in me was a, you're gonna do anything you want in life, diabetes isn't going to stop you. And B, as long as when you go to the doctor, your a one C is in a good place, then you're good and you're in you're healthy. And my a one C was never crazy. It was always in the high sixes, low sevens. And that was before CGM. Right? I was diagnosed 21 years ago. And so there was no really concept of time and range being more important than a one C and and things like that. I think that during that time, it was a lot of because I didn't want diabetes to stop me. I took that as don't slow down to pay attention to your diabetes, it was very much do the bare minimal to keep your numbers not from being crazy, but just in a healthy range or healthy to your doctor standards or to your parents standards. And that time of ping pong up and down. When I eventually got to college, I realized that wait a second, I'm playing I was recruited to play division one soccer in college, it was the first time that I really started to connect my mind and my body and my numbers. And really realizing that I was not taught a lot about my whole body like this whole body approach of food and nutrition and glycemic index and eating for energy and eating for better blood sugars and exercise for specifically insulin sensitivity and what happens with weight training. And we're working out you know, two times a day when you're playing soccer in college. And those exercises are impacting my blood sugars in different ways than I had seen in the past. And I was trying to compete with a lot of other players for spots. And now my blood sugar's 300. And now I have a disadvantage. And I didn't like that because I was a very competitive person. And I took this as an opportunity to become more independent and tuned in to my diabetes and crafted in a way that would make me feel successful and would make me feel in control. And as an effect of that, what I did was I became obsessed, I became obsessed with my numbers obsessed with the food that I was putting in my body, obsessed with exercising, like over exercising all of this to the point where I actually lost my menstrual cycle for four years because my body fat percentage was so low, and it wasn't like I wasn't eating it wasn't like I was suffering from an eating disorder. In that sense. It was literally just a disorder of almost like perfection, in the name of wanting to control my diabetes in my numbers so badly. And when you start to see the results of that you're like, Okay, I'm doing this right. And that is a story I tell a lot and a lot of people know is I came home from college I think I was a sophomore junior in college. I had my endocrinologist checkup and you know, when you're a teenager your parents still come to the endocrinologist with you sometimes the doctor and so I remember sitting on the chair and my mom next to me and the doctor coming in who is my pediatrician kind of doctor from my dad. The doctor from a from childhood. And she was like her hands were in the air. And she was like Lauren, I have never seen a college student with a 5.7 a one. See, this is A1C you've ever had this is incredible. How did you do it? She like calls the nurse and the nurse comes in. She's like, can you talk to my other patient like in the UK, this other girl in the other room who's in who's in college and her agency is in great. And I was sitting there and it was like, literally an out of body experience. Because I'm watching like the doctor, high five, my mom and my five each other. And I was like, I'm not happy. I'm not happy. And you often think that your blood sugar's being perfect, or your agency being perfect. That is the sign of happiness, it's a sign of hell, that's a sign of perfection. I know you've made it. And I would never ever want to put my body through what it went through and go back to that place. And it was really because of my mindset. It was my mindset, it had nothing to do with a 5.7 a one C because my last day one C most recently was a 5.6.
Totally different plays, I eat pizza, I have doughnuts, I have, you know, I want to have a fabulous relationship with exercise and with food. So it's all about the intention behind what you're doing. And that's what I realize most in that moment.
Stacey Simms 11:21
I have so many questions, Lauren. How did you get them from I mean, you're still very young at 19. I'm thinking my daughter is 20. My son is almost 17 at 19. How did you get from I have this great agency. And I'm not happy to now. And I'm sure it was a journey I'm sure didn't happen overnight to I have a great agency. And I'm happy with I mean even pizza and I'm exercising the way I want to.
Right back to Lauren, but first Diabetes Connections is brought to you by Dexcom. It's really hard to remember what things were like for us before we started using the Dexcom. I mean, I haven't forgotten at what I mean is it is so different. Now, when it was a toddler, we were doing something like 10 finger sticks a day. Even when he got older, we still did at least six to eight every day and you know more when he wasn't feeling well or when something was off. But with each iteration of Dexcom, we've done fewer and fewer sticks. The Dexcom G six eliminates finger sticks for calibration and diabetes treatment decisions. I think all the time about Betty's little worn out fingertips. And it makes me so glad that Dexcom has helped us come so far, his fingertips are now healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to diabetes connections.com and click on the Dexcom logo. Now back to Lauren. She's talking about how she found her way to being more kind to her body and to herself.
Lauren Bongiorno 12:58
I would say that it was definitely a culmination of a few different things. The first thing was the real that moment really was a defining moment for me. But it also just opened up more ways of thinking about my life. And my just understanding of myself. I had started doing yoga around that time in college and Yoga does this incredible thing of giving you space to really watch your body and watch your patterns and watch your thoughts without judgment that's like at the root of the philosophy of yoga, or at least one of them. And what I realized was I wasn't happy with myself and with my identity, that diabetes was something that my whole life I kind of pushed away and it was always in the background, but I never fully accepted it. And if you don't accept the body that you're in, in my experience, you try to overcompensate in other areas. So you try to overcompensate in being perfect with food being perfect with exercise being perfect with your blood sugars. And ultimately, I had this like moment at the doctor's office where I just looked it's almost like a flashback in a movie where I looked back in my time so far in college and I'm like everybody is going out and having fun and I'm like saying no to going out to dinner with friends so I can make my organic broccoli and fish or whatever it was because I was didn't want to be tempted by having bread or pasta at this like restaurant they were going to or I would you know not want to stay out late or even like drinking college I didn't drink a lot like barely drank in college because I wanted to go to a 6am yoga class next day because I know that that really benefited my mind and my body in the way that I thought it needed to. And I just realized that I didn't want to live a life that a wasn't sustainable and be I wasn't happy. Like I think that it's important to understand your core values and I think my values were shifting away from perfection and approval of others or approval. Have my doctor my family and like more of being a little bit of a renegade and being like, well what do I want my life to look like? What do I want my relationship to food look like what I want my relationship to just everything that I do look like and what came out of that was this realization that what I was doing didn't match up and so what I was doing it wasn't sustainable if I wanted to lead a healthy and happy life and so I wanted to find a way of how could I have a healthy diabetes you know journey with my blood sugar's and not have complications later on in life and not have be in that phase in my life where I was from seven to 18, where I was just paying palming all over the place and not being aware of my blood sugar's not having predictability and those types of things. And how could I also not be on the other end of the spectrum where I was super restrictive, obsessive over health, there had to be a happy medium, there had to be a better way. And I had tried so many different diets at that point, high carb, low fat keto, high fat, low carb, like don't eat bread, don't eat process, this so many packaged food, but I realized that it was just exhausting. It was exhausting to try to apply it an outer rulebook to my life, and I wanted to start looking at my inner knowledge and creating that rulebook for myself.
Stacey Simms 16:17
Let's talk a little bit about coaching. Can you explain a little bit about what coaching is because I'm, as a parent of a kid with type one we have only ever, like, seen the endocrinologist. And then I've relied on our educator, and, frankly, the diabetes online community. What's a coach,
Lauren Bongiorno 16:34
of course, so a coach really is somebody who is helping you with accountability is helping support you in getting to the vision that you have for yourself, and is there to reflect back patterns and observations and help you with behavior change. So for example, a lot of parents of kids that we work with in our programs, they're coming because they realize, okay, we see our endocrinologist or a doctor a few times a year, and there's so much time in between that we want to be able to understand how to get our child's numbers better overnight, or in the morning time or when they're going to play sports. And we know that it's really about like the day to day things and not so much the let's go to the doctor and just depend on on them to tell us everything, we want to essentially take ownership over this and understand what's happening with their hormones with their insulin sensitivity with their, you know, time of the month, if they're females who are going through that phase that can be really challenging or just growth spurts in general, with nutrition and all this knowledge. So I really Riselywe focus on a behavior change, be published research, and then see our client data that we've had since 2015. And it's a lot of of work of a combination of mindset, and the blood sugars and the emotional impact that diabetes has on you. So you can think of it as a supplement to your endocrinologist, your CDE. And you're an a therapist or a mental health provider. If you have that.
Stacey Simms 18:05
I get a little nervous when people who don't have a medical degree are helping but at the same time, I understand that. Like I said, I got most of our information from the community right when I started a Dexcom on my son at age nine. I didn't call the Endo. I mean, I literally put it on Twitter, and was like, I don't understand this. Can you help me? What am I looking for? So I'm kind of speaking out of both sides of my mouth, Lauren. But I guess the Frank question is, talk to me about helping people with type one as a coach, when you are not a diabetes educator when you know you do not have a medical degree?
Lauren Bongiorno 18:39
Hmm, I absolutely love this question. All the coaches on our team are nationally board certified health coaches with that at the root health coaching is about helping you get unstuck by helping you develop the tools and the strategies to become aware of your blocks and your patterns so that you can move toward that vision that you have for yourself or for your child. A lot of times people know what they should be doing. Right? They know, when you slow down you take time what's happening with your blood sugar's what we're doing is we provide a space for you that is a dedicated space and dedicated time to slow down and hold you accountable for looking at your Dexcom clarity and looking through the patterns of your blood sugar. Your child's blood sugar's for the past two weeks and saying, Oh, wow, we didn't even realize that at 8am Every morning or 7am when they get on the school bus that their blood sugar is is really spiking and we're rushing, right, we're rushing to get out at the door. So we're not giving them a pre bolus. We're not doing drinking water in the morning or we're having, you know, just a waffle instead of maybe adding a little bit of protein in that and let's get curious what would happen if you did X, Y and Z Right? Or putting them in the driver's seat most of the time and saying what do you think would change the outcomes for these numbers? Like what are the things things that you've noticed have worked for you that you want to be doing more. It's identifying the gaps in your knowledge, giving them the accountability and the relatability, to somebody living with diabetes, as all our coaches do that they need, and helping them with the implementation and creating sustainable change. We've coached over 350 clients over the past six years now. And if you look at all that client data, it speaks, and it says something. And what it says is that there is a need for coaching, because diabetes is a condition where it is impacting you 24/7. And depending on seeing your doctor, which the health care system in America specifically is very much a top down model approach, where you're sitting there and you're waiting to receive, receive your next move, receive what your basal changes receive what you should do next, it doesn't set you up for success, the education that diagnosis doesn't set you up for success, the touch base with your doctor doesn't set you up for independence. And we have a choice to either follow that or to create a new system and create a new way. And that's essentially what we're doing.
Stacey Simms 21:09
So let me ask you some specific questions. If I could like kind of pick your coaching brain here. This time of year, without diabetes, many of us are thinking about changing what we eat. I'm going to diet this year, I'm going to lose that weight I gained I'm going to and it never works. Because I think we all know that that kind of FAD dieting or that short term stuff doesn't work, but we do it anyway. Can you speak a little bit? Because you've been successful with this, you know, you mentioned you wouldn't go out to eat with your friends, because you had to eat a certain way at home? How do you get there? How do you create those changes that really do make a long term difference,
Lauren Bongiorno 21:45
I think that we have to stop thinking that there's this next one thing, this next diet, this next outer rule book or whatnot, that is going to be the solution to all of our problems with our methodology and coaching specifically, and in my own personal life, what has made the biggest difference is really holistically looking at the areas of your life that impact your health, from your relationships to your self worth and your self love to your with diabetes, it's nutrition and relationship with food. It's stress management, it's your sleep, it's your hormones and your understanding of all of that it's a holistic approach, and a holistic approach. It can't happen overnight. And so diets and things like that with food, if you've tried to do it in the past, and you've gotten through, like, you know, up to Wednesday, and then you're like, shoot falling down. More is like, Alright, we're gonna go over like on Monday, which like we've all been there, it's so fascinating that we keep going back to doing that same thing instead of realizing, wow, that doesn't work, right. And so what I like to say is, don't set a goal that has anything to do with a metric, whether it's weight, or even with a one C and like, specifically, set the vision that you have for yourself. And if you set the vision that you have for yourself, like how do they feel? How do they what do they look like? What how are they operating from day to day? What are they thinking like, who are they at their core, then you start making decisions on a day to day basis that support that vision and there's less pressure and when there's less pressure of like, oh, shoot my a one C or my you know, blood sugar isn't better than it was yesterday, when I woke up or the weight, the scale is a second today than it was yesterday, there's more chance of actually lasting longer, because you're not going to feel as defeated. So if you want to feel somebody who is energized, and who is, you know, really fitting good in their clothes, or just confident set that as your vision of yourself, and then on a day to day basis focus on doing things that support that vision.
Stacey Simms 23:54
Let me ask you if I could, and this will be for people who live with type one, you know, adults, young adults, older adults, but not parents yet, like we'll get to them later. Can you give us some advice, perhaps or a couple of tips to have, you know, like more confidence with type one. And as you said, like not necessarily how to get your agency down or more time in range, but just like some good stuff for this year.
Lauren Bongiorno 24:14
Yeah, I love that. So I would say the first thing is to lean into your diabetes. So many of us often think that the diabetes part is the shadow part of us and it's the part that we have to hide and we have to push away and if that is your underlying belief that I can't be loved if people know that I have diabetes, or if I'm showing my insulin pump or I won't be accepted onto the soccer team or football team or whatever it is. If that is your like subconscious root belief, then you're going to operate from that place and you're not going to want to be checking your blood sugar in public you're going to wait until after you're done eating with your friends or drinking to the bathroom and give yourself you know a shot or give yourself your insulin and setting yourself up for you know higher blood triggers all night long. So there are so many benefits of just leaning in. And coming from a place of me for years hiding my pump, not letting people know that I had diabetes and not telling my now fiance until three months in that I had diabetes, it is so freeing, and such a relief when you can just show up as your full self. And it has benefits of obviously your mindset, and how confident you are and of your numbers as well. So I say I would think that that's the first tip I would have because it's a more of a mindset, emotional tip that will take you so far. And then on a number standpoint, I would say to focus on 1/4 of the day. Diabetes is like a Rubik's cube where there's 1000 different is that there's at any one given time, I described it recently as being interviewed for an article and they were asking me to describe but a day in the life of diabetes. And I essentially said it's like a seesaw with 50 Different factors piling up on either side at any given time, and you trying to find the centerpiece, right. So there are so many different factors. And the idea is is to not get overwhelmed by all those factors. Because if you're overwhelmed, you're going to be paralyzed, and you're not going to do anything, and you're not going to want to move forward and you're going to feel defeated. So try to look at 1/4, the day that maybe it's your most out of range section, whether it's overnight, morning, afternoon or evening, and just commit to working on that. Just commit to maybe pre bolusing at dinner time or commit to actually putting your CGM alarm on or on a different ringtone. So you wake up in the middle of the night, if it's high, since that's like the longest amount of time you want, you want to be arranged essentially, for your overall health, choose that 1/4 of the day, and then once you nail that, then move on to the next piece. But diabetes is always this thing that it's continuous learning, and you want to be able to have the energy to sustain until there is a cure. And we don't have to lower your agency five points, or three points, or even two points in the next 30 days or 90 days we can work rather on building the habits that support that a one C.
Stacey Simms 27:13
What is your advice to parents of kids with type one in the new year? Like what should we be thinking? How can we help our kids like grow up? This is a big challenge. Happy, Healthy, independent, not too worried about diabetes, but worried about
Lauren Bongiorno 27:26
oh my gosh, yes. And we were talking about this off air. See where it's interesting, because we've coached so many people who are in their 20s 30s 40s 50s and beyond who have had diabetes since they were kids. And we've seen a lot of their challenges that they're coming to us with today that a lot of it is rooted in their childhood and how their maybe parents kind of or their their caregivers or their doctors spoke about diabetes to them or how they were trained to relate to their diabetes. And so when we see the parents of T Wendy kids in our group coaching program, or in our one on one programs, we're watching and we're we're seeing how they're relating to their child's diabetes and what their child is how they're related to their diabetes, and we're able to help shape them in a better direction, so that they're not ending up where the kid is, you know, 30 years old coming back to us being like my, you know, my mom, did you when I was coaching with you guys when I was younger, and I've been and I feel like I need to come back. Right? Like it's, it's helping them now. And still, those things that we wish as coaches and the older people in our programs wish that they had when they were children. So I think there's a few different messages that I would share. One is your goal as a parent is not to help your child avoid suffering, and avoid all the highs and all the lows and all those things all the time, your goal and your job is to be there for them in a way where they feel like they can talk to you, they can come to you. And you could observe maybe what you're seeing in their blood sugars or in their behavior in a teammate kind of way. So kids are going through so much with their hormones and with development, and especially in their preteen and teenage years just fitting in, in general. And then when you add diabetes on top of it, it's there's this extra layer that just comes with it. And so one of my least favorite things is when you hear a parent or a doctor say off that child, they're just being so non compliant, right? They're just they're not testing their sugar, they're not doing this, they're they're just not being responsible. We have to put stricter rules on them or we can't let them go out or we can't do that. That isn't going to help. Right what they you really need to do is to help them get to the root of why they're feeling that way and why they're behaving that way. So one thing that I we work a lot with on with parents is on helping them understand what their child's goals are, which for a lot of them it's to have the cupcake at school with their friends or to be able to go out and have a sleepover with their friends and not have their mom call them 26 times, right? Which I always joke about, because I'm like, now there's Dexcom share, when I was a child trying to have a sleepover, my mom didn't even have Dexcom to like, look at, I'm pretty sure she sat in the car outside the person's house for like, the whole entire night. It's valid, right and those in the kids and what they want, it's this balance between wanting to keep your kids safe, and also wanting them to just be a kid. So I think that a lot of the time, it's about you as a parent wanting to protect them by not burdening them. And just by taking away you know, all of the jobs that they're doing with their diabetes or their task or making it simple with like carb counting for them, we're only putting quote unquote, healthy food or low glycemic foods on their plate. But that might not actually be what's going to help them for the long run. So really, I think for any parent listening, this, to me is one of the hardest jobs, you guys are all heroes, I can't imagine I look at my mom now and my dad, and I'm like, Thank you, like, I had no idea what you were really going through. And that that job that you that extra job you had when I was diagnosed, and you're doing great. And I think that you can do quote unquote, all the perfect parenting in the world and your child, there's going to still have, they're still going to have challenges later on. So the goal is really to set them up with to be independent, to care about how they feel, to care about their numbers, but also to not be limited by their diabetes and and to find that balance.
Stacey Simms 31:32
I'm just curious. Did you ever go back to your endocrinologist who was like, Yes, this is amazing, like the high fiving. Doctor like does that doctor know about it this way?
Lauren Bongiorno 31:43
So the funniest thing about it is I adored that doctor, I love her. She we follow each other on Facebook. Sometimes when I do local, I speak at local JDRF event. She's there love her. And I think that she's probably seen me talk about it a little bit on social media for sure. We've never like address it specifically. But I don't it's not about her. That wasn't her fault. She was celebrating me like I think a parent would celebrate a child to achieve who had an agency like that. And I think the bigger issue is really the lack of emphasis on mindset. And on mental the mental and emotional impact diabetes has on children and teenagers and adults for that matter with diabetes.
Stacey Simms 32:27
Hey, I'm just curious. And I always ask guests this, you don't have to answer. What kind of tech do you wear? What are your diabetes devices if you don't mind sharing?
Lauren Bongiorno 32:34
Yeah, so I wear an omni pod and the Dexcom G six, I was on charts for my first two years living with diabetes. And then I went to a Medtronic wired pump for about, I would say, 14 years. And then the last six years, I'm not sure if this math, somebody can add this math, drag, but it should all equals 21, less five or six years I've been on an omni pod. And I just love, love love that it doesn't have a wire. And that's that works for me personally,
Stacey Simms 33:02
before I let you go. It talked to me a little bit about your partnership with a couple of nonprofits. You know, I know that you would rightly want to make more of a difference than just with coaching. So who are you working with? What are these about?
Lauren Bongiorno 33:16
Yes, so we are here to help create the short term change for individuals impacted by type 1 diabetes and families and the long term change with diabetes care. So our approach is community based it's collaboration, it's how can we all take our the best of our missions and lift each other up. And so ways in which we collaborate with the community. Number one, we have Kyler Keres, which is a nonprofit organization that provides grants for continuous glucose monitors and insulin pumps for children and young adults living with type one diabetes. And Kyle banks is the founder, he actually played Mufasa on Broadway in The Lion King. And he is an incredible human being we actually found out recently when we were together that we have the same diabetes anniversary November 1, so that was fireworks were going off. Because we already love each other so much, but we're thrilled to partner with them. Because we just have, I think, because I was diagnosed as a kid and so many people on our team are also diagnosis kids, we have a special space place in our heart for young adults and children who don't have access to those things. And there's a direct correlation between your household income and your agency and your diabetes control. And so we really want to be able to give back in that way and to help support those people. And then secondary to that we have our together to one D Impact Fund which partnerships that we you know, work with in the community. They're able to donate to that fun to help give coaching scholarships to people who face significant barriers to health care to our coaching programs. And all the people who come through our programs through the scholarship They're carefully selected and you know, have an in depth review process, but it really allows us to be able to impact the community on that intimate level.
Stacey Simms 35:05
It's so interesting to hear, like how much I noticed didn't happen overnight, but like how much you are doing, when you look back at that 19 year old with that amazing a one C, but that not so amazing life? What do you think you've come so far?
Lauren Bongiorno 35:21
You know, in a way, I feel like I had so many years of struggling with my diabetes, that it was a blessing in a way it was such a blessing because it brought me here and we've impacted so many people's lives with diabetes. And you know, women who weren't able to have babies, they've had miscarriages after miscarriage because you know, maybe it's related to diabetes. And then finally bring a healthy baby baby into this role because their agency is down or to the parent who their child is diagnosed. And they feel like there is no possible way and they don't understand how they can, you know, go to a soccer game and not completely tanked their blood sugar's and then they're able to and they feel that their child has that sense of freedom back and confidence that all these little things, it's really, it's why we do what we do. We are there's so much passion behind what we do so much intention, so much integrity, and so much, so much hope that what we're doing can continue to be a ripple effect and impact people on an even larger level than we're doing now. And that's what keeps us going every single day. So I think 19 year old me or even seven year old niece who is standing in front of my gym class, my mom recently found a video I was sending for my gym class after getting diagnosed, doing a fundraiser at my school with my little pigtails and limited t shirt on it was so cute. And that girl was I feel like meant to do this all along. And it doesn't mean that there's not challenges, it doesn't mean that there's not Robox but it means that that those things are just there to push me to keep going and push me to realize how worth it this is.
Stacey Simms 37:00
That's great. Oh my gosh. I love that. Lauren, thank you so much for joining me.
Lauren Bongiorno 37:04
Thank you so much for having me, Stacy.
Stacey Simms 37:11
You're listening to Diabetes Connections with Stacey Simms.
More information about Lauren and coaching and Risely and you can read her story. And she's been on some national media, she's got great videos, all of that is linked up at diabetes connections.com. As we do every week, every episode has its own page.
If you head on over there and click on episodes, you will find them all. There's also a very robust search. And I say that because we are up to this is episode 455. So if there's a topic that you're interested in, we have likely covered it. Obviously, we haven't covered everything. And please send me your suggestions. But if you just type it into the search box, it really is. I'm really thrilled with my web folks, I'm stuttering around because I had nothing to do with it. But I asked them to make me a great search. And they did. And you could also search by topic by date, whatever suits your needs. So please check that out.
We have some great shows coming up. Boy, there's so much going on these days every Wednesday I do in the News Live and that's on social media. And then I turn that into a podcast episode. That's every Friday five or six minutes of just headlines and in the news stuff for the diabetes community. Next week, you should be hearing from ever since I'm working on that episode right now we're going to talk about their longer where and you know, a lot of you already have commented in the Facebook group about you know, worries about this device. And who was it for? I gotta tell you, Benny is super eager for this because of wrestling and his sports. Think about a CGM that you can't knock off, right. So I'm not here to endorse them. But I am here to say let's talk to them and find out more about this option. We're also going to talk about Tandem and waiting because while they just got FDA approval, they have an earnings call later this month that I want to wait until after that because some interesting things may come out. So we'll be speaking to them. And that episode will probably air in early March.
But in between those two, I have an interview with the folks at Pixar and I have a great story about why there is diabetes technology featured in turning red. This is the newest Pixar movie debuting on Disney plus in March. And so look for that episode, probably right before the movie comes out. We've taped it, I have to hold it sometimes these things are embargoed, and this was one of those cases. So really excited to bring that to you. All right, thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.
Benny 39:43
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
People with diabetes were encouraged to get a COVID vaccine early on when the shots were released. But what happens when you live with type 1 and another condition where the vaccine recommendation is more complicated?
Molly Schreiber lives with T1D and rheumatoid arthritis. Her doctors told her to absolutely NOT get a COVID vaccine due to treatment she was taking for the second condition. She was able to eventually get vaccinated then, despite taking precautions, she and her entire family got the Omicron variant. They’re fine now and Molly has a lot of good info to share. She also has several family members with type 1 and has a lot to say about how we care for older people with T1D.
Molly works at the Community Manager for Savvy Coop.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Type 1 Diabetes with Other Autoimmune Diseases
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Episode Transcription Below (or coming soon!)
Please visit our Sponsors & Partners - they help make the show possible!
Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921, where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, people with diabetes were encouraged to get a COVID vaccine early on, when they were released. But what happens when you live with type one and another condition where the vaccine recommendation is… complicated?
Molly Schreiber 0:35
And I messaged my rheumatologist and I said great news. My hospital has the vaccine in I can get an appointment. You know, I was super excited. And she called my cell phone immediately and says You could not get that vaccine and it was a gut punch. What do you mean, I can't get this vaccine,
Stacey Simms 0:52
Molly Schreiber lives with type one and rheumatoid arthritis, she was able to eventually get vaccinated, then despite taking precautions, she and her entire family off the omicron variant, they're fine. And she has a lot of good information to share. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And one of those people had a really bad low last night, as most of you know. And if you are new, I will explain my son, Benny was diagnosed with type one right before he turned two, he is now 17. We use the control IQ system with Tandem and Dexcom. And I gotta tell you, it has been a while since that urgent low has gone off on my Dexcom app. And I really don't remember the last time he had an urgent low that he didn't treat pretty quickly. You know, he very rarely asks for my help. We are at the point now where I have turned off all of the Dexcom alerts except that urgent low.
But in the middle of the night, it was like one o'clock in the morning it went off. And I don't know, you know, usually I would have waited and just said maybe he's got it. He always had stuff in his room. But it was It wasn't in 55 It was 42. So I said, you know, I'm gonna just go check on him. And they brought up a juice box like I have done a bajillion times, you know, when he was little, it's so funny. I gotta say, you know, the juice box used to seem like a big deal, a big amount, I should say. But it looks so tiny. He’s now like six feet tall, but I brought it upstairs.
And it was immediately clear that this was a real low. This wasn't a compression low. He wasn't leaning on the Dexcom. He was disoriented, he was sweaty, he was super hungry. So he drank the juice box, I got him some crackers. And then I sat with him for a little bit. And he started to kind of come back to himself. But he was so hungry. And you know what this is like, I don't know about you. But he was sometimes I really try if I'm with him, which isn't the case all the time anymore. I tried to say you know, you've had you've had your 15 or 20 carbs or you know, when he was little you had your four to eight carbs. And let's just sit because you know, you're going to be okay. Now, you know, you're not going to be hungry in 15 to 20 minutes. But man, that urge to eat. I mean, I know his brain is screaming at him. So I was like, you know, forget this. I went downstairs and I got him some more food. I figured I can always give him more insulin for it and who knows. He just really still felt bad. So we overtreated which, again, we haven't done it a long time totally overtreated. And, you know, he finally felt better and was able to go back to bed. But you know, my adrenaline is like, through the roof. I finally did get back to bed. But I'm sure that he felt much worse than I did. I oh my gosh, it's been a long, long time. I'm sure many of you were asking, Well, what happened? The truth is I don't know what happened. I didn't ask him in the moment. I mean, he's 42 he's not gonna have a coherent answer. I don't really care. I just wanted to treat the low and then go back to sleep.
I’ll ask him tonight at dinner but I gotta tell you at this point, 15 years in the answer he has diabetes is good enough for me. My guess is he ate something and gave too much insulin. Or I know we put a new site on. Maybe that was like a super absorbent site. You know, sometimes that happens, you just hit that sweet spot. And it's just the insulin flows somehow a lot better in that place. If it was really interesting or unusual, I will report back but I only bring it up because it has been a long time. Since I've had to treat a low like that in the middle of the night. It made me remember all those times, you know, not just before control IQ but before Dexcom when that would have been you know a finger stick every five minutes while we were waiting for him to come up and you know, very different times. I hope we all get a better night's sleep tonight. And like I said, if it's anything really interesting or if there's a follow up here, I will let you know.
Alright, this week's guest is somebody I've known for a long time through the diabetes online community. She certainly remembers a different type of technology. We did get to meet in person at a healthy voices conference in Chicago nearly six years ago. We talked about that at the very end of the interview. That was so cool. Hold that conference was freezing. But man, I would love to go back to more in person stuff even if it's freezing. Molly Schreiber was diagnosed with type 1 diabetes as a child in 1989. Her father, grandfather and a cousin all lived with type one as well. In 2018, she was also diagnosed with rheumatoid arthritis. I follow Molly on social media, she's been very open about her struggle, not just with these conditions, but with how difficult COVID has been for her. You know, with autoimmune stuff, you want to be more careful. But her art a diagnosis rheumatoid arthritis diagnosis made getting the vaccine a tough decision. And then when her entire family did catch COVID During this omicron search, it made that more difficult to Molly has been a longtime blogger in the diabetes community. And I'll link up some of what she has written. She is currently the community director for savvy cooperative, and she explains more about that as we talk. I do want to say, you know, Molly really is an incredibly positive person, but she's not a Pollyanna. She keeps it real. And it was great to catch up.
Molly, welcome to the show. Thanks for coming on.
Molly Schreiber 6:08
Thanks for having me.
Stacey Simms 6:09
All right. Before we jump in, or talk about anything, I have to ask, how are you? How are you feeling as your family
Molly Schreiber 6:14
were okay, we all, you know, had the pleasure of having COVID Funnily enough, we pulled my daughter from college because it was getting pretty intense down there and gave her COVID When she got home, so really failed there. But no, we're all doing a lot better. It's been almost three weeks now. So
Stacey Simms 6:31
yeah, I'm glad. And um, you know, there's an awful lot to talk about leading up to that diagnosis, but I'm glad everybody's doing okay. Scary stuff. Yeah, this is usually where I asked people to tell us their diagnosis story. And I'd like to start there with one additional question if I could, because you don't live with just and I put that in quotes with just diabetes. Right?
Molly Schreiber 6:50
Right. I was diagnosed with type one diabetes, when I was a kid, when I was back in 1989, I'll date myself, and I knew a lot about the disease. So my father had type one or had type one and his father and then my paternal cousin. So type 1 diabetes was very much in my life, you know, needles were around testing. At that point, testing blood was not as common as urine. But um, you know, it wasn't a shock, I should say, a lifestyle change. We were already kind of living that. But fast forward to about 10 years ago, I was diagnosed with rheumatoid arthritis, which, yeah, the just living with both is definitely a challenge. They don't, you know, unfortunately, autoimmune diseases can come, you know, in pairs or in groups, you tend to be a collector, but they don't necessarily get treated, or even you have similar symptoms to each other diabetes and RA,
Stacey Simms 7:51
would you mind and Pardon my ignorance? Would you mind talking about RA for a moment what that is?
Molly Schreiber 7:56
Yeah, so the easy way to sort of translate it to the diabetes community is instead of attacking I slit cells, my immune system is attacking my joints, and specifically the synovial membrane, which is sort of that lubricating fluid that's in your joints is not immune disease, as well. So comes from the same family. As you know, and most of your listeners, we don't really know why yet, it happened to me very, I would say suddenly, and I had sort of just an elbow pain thought I grabbed a bag, wrong, you know, off of an airplane on on a weekend trip and just thought, I've asked to push that bag too hard or done something and within a month, I couldn't straighten that elbow. So my arm was bad. And I got to have the fun experience of doctors telling me I was favoring it or had tennis elbow or all sorts of fun things. But within a few weeks, I couldn't walk downstairs and I was sitting because my feet and my knees and just did not then did not work. And I quickly went to the doctor and just said something's really wrong. And unlike type one where you get a blood test, and you know, if your blood sugar is a certain number, there's a pretty good chance you know that you're going to be diagnosed with diabetes with RA, there is a blood test. Lucky for me, I tested positive but plenty of your listeners if they have RA they not not everyone test positive. So you could go down a very long treatment of trying to figure out what's wrong. What is the treatment? Is there treatment? There is there's a couple different treatments, so definitely medication. So you would start with what are called disease modifiers and the most common one that people might know of is called methotrexate, it can be used all these drugs can be used for cancer, but these are used in the RA and similar disease spaces in much smaller doses. So yes, you may if you look them up, see them referred to as chemo that they are just given in lesser doses. So we have those drugs. Most of the time. They don't do enough and you need something that's called a biologic and There are quite a few options. To be honest, this was the hardest part for me. All right, is that I went from living with type one, you know, basically my whole life and there's one treatment, right? There's insulin, everybody takes it. You know, we might have the rare person. I'm sure everyone's heard of someone that was maybe allergic but you take it it works. Does it work perfectly? No real? No, that doesn't always work the same. But everybody takes it. But with a biologic. And with other treatments with these arthritis, autoimmune conditions, it's a gamble. You know, what commercial? Did you see that maybe you want to try that one is a literal question from your doctor. Wow, it is a true gamble of what's going to work. They don't know yet. Why some jobs work and some don't for people and what works for me, if you were to be diagnosed with RA, it might not work for you. It's just a complete gamble. And they don't last forever. So some people have had success for a long time. Others have tried multiple drugs because they lose efficacy. We'd like to say that the drug failed the patient. Patients like us are tend to sort of internalize it and say, Oh, I failed that one. But no, we're gonna say that the drug failed that
Stacey Simms 11:11
I'm pausing here, I'm just gonna kind of stuttering because I'm trying to figure out how to ask this. What I'm trying to say is, with type 1 diabetes, and RA, you're mentioning insulin, you're talking about biologics and other medication, any dangerous interactions, anything that you specifically have had to look out for.
Molly Schreiber 11:24
Yeah, so a couple different things. So one of the initial treatments for rheumatoid arthritis, and it can be a treatment that a lot of patients stay on are steroids. And so plenty, you know, if you have diabetes, and you've ever, you know, had even a horrible bronchitis or pneumonia, or maybe you've had to get a steroid injection, you know, that horrible boost, your blood sugar is going to take them after you have started either that steroid pack or you've had that injection, well, a lot of patients are on a long term dose of steroids. For me, that's simply not an option. And I say that for myself, because, to me, the the struggle of managing my blood sugar as well on them. And also just the feeling of being on them is not worth the side effect of the you know, I'm not getting enough bang for my buck, you know, with with a steroid, so it's not worth the added stress. That's not to say you can't manage steroids, you know, our pumps and our different basal rates and everything, do great things. And I even have a steroid profile in my pump. If for when things get bad, yes, I will go on them. I'm not going to be too prideful. But steroids are first line of defense, they make you feel better quick, they get you back to life, you know, and for me, there's that added habit of blood sugars. But then there's also that little piece of how we're susceptible to getting sick, you know, where our cold takes a little longer for us to recover from, you know, and when you're on these additional medications, you want to keep your blood sugar in check, because when it's not, you're feeling worse, and you're more susceptible to those complications. So there's just that added caveat, you know that you want to stay as healthy as possible, but you're on these drugs that are really, they're calming down your immune system, so it stops attacking you. But in that same breath, they're also not preventing you from getting sick.
Stacey Simms 13:17
I'm going to come back to your family's experience with type one as you listen, I don't want you to think that I'm going to skim over that we're definitely going to revisit that. But keeping our conversation about ra here with COVID. You are one of the first people I remember seeing on social media in my circle, certainly that was talking about issues with either being able to take the vaccine or wondering about being able to take a COVID vaccine. Is that because of the biologic or the medications or is because of the RA condition itself?
Molly Schreiber 13:48
Yeah, so it's a little bit more on the medication side, but a lot of patients again, are on a ton of different biologics. And so at the time when vaccines first came out late in December of 2020, as their confer hospital then and with that came with being eligible to get a vaccine early, which is great. Sounds wonderful, right? I was super excited that I was in a drug club or Texan or Texans are really strong line of defense. With Ra. It's used a lot with non Hodgkins lymphoma as well. It's pretty in terms of the drugs you could be on. It's a pretty heavy hitter, but when I went on it three years ago, I needed it. My disease was in a space that needed it and it worked. I just had an infusion. So vertex in isn't infused by logic. Some people get it once a year, the earliest you can get it is every four months to talk to infusions every four months and repeat. So I was on that schedule, and I'd had an infusion in October, and I messaged my rheumatologist and I said great news. My Hospital has the vaccine in I can get an appointment. Yeah, super excited. And she called my cell phone immediately and says You could not get that vaccine and it It was like a gut punch. What do you mean, I can't get this vaccine. And she said, look, the ACR, the American College of Rheumatology, you know, like a lot of us even still, to this day, we don't know everything, still trying to figure it all out right in terms of COVID. But they know that you need to at least be as far away from that biologic infusion injection as possible for the vaccine have a chance to work. And since I had just had it, I wouldn't be due for my next one until March or April. And she said, We got to try to get you to March or April. And there is a little bit of history behind this. So a lot of patients that have been on vertex in the flu vaccine, for example, doesn't work in one dose, sometimes it's recommended that they get two doses to be able to have an immune response. So they at that time, were kind of basing it on that. And so I waited. And it was incredibly frustrating. I'm pretty sure that's probably what you saw on my social channels, was that here's this thing that we've all been waiting for, with the promise of it, getting back to our lives, but also the promise for, you know, auto immunocompromised patients like myself to feel a little bit more safe, you know, we could get this vaccine and finally feel safe. And I just couldn't get it. And so I had to wait. And the only other thing that came with waiting as I went back into our sort of statewide system of trying to get an appointment, which I think everyone probably still have stories, I'm getting an appointment or getting a test and had to wait and get my initial vaccine. I got that in April, when I was earliest I can get an appointment.
Stacey Simms 16:40
I feel like I may have missed something. I'm sure you said it. Did you have to go off your medication and in order to get the shot to get the vaccine?
Molly Schreiber 16:47
Yeah, so with the toxin and retexe intakes, obviously, everything varies, but the the longer you can have it out of your body, the better. So your body can start, you know, kind of revamping and not being so suppressed. And so with vertex and they wanted me to try to wait six months, I sort of made my own compromise of April, it would have been nice. And with that came a discussion with my rheumatologist. And she frankly told me that she wasn't keeping any of her patients on this drug until COVID was sorted. And this was again a past discussion now, right? Right now it's as we know, we're not going to stay on this drug because of how unprotected you can be against these viruses that are popping up. And she and I agreed that since I still had some other options on the table, that I would try something else. And retexe in its place, obviously, if she had patients that truly, you know, it was the difference between walking and not or, you know, work and not she was not going to take the drug away from them. But we had to have a frank discussion and with our eye, again, back to what I said earlier to gamble when you take a medication, so it was another Okay, Let's gamble and see what this next one might do. While I was on one that was working.
Stacey Simms 18:10
And then after all of that, like many who were vaccinated and boosted buzz, you know, being very careful. Masking up. You got film Kron virus got you got omachron. So I hate to say like, what's your reaction? Because I think we would all have the same reaction. But you went through so much.
Right back to Molly in a moment, but first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not, it's not just that you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G six continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin you may be covered. To find out more about what that means. And if you qualify, check out dexcom.com/g six dash Medicare and I will link that up for this episode. You don't need to write it down. It will be in the show notes at the homepage at diabetes connections.com You're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it's dexcom.com/g six dash Medicare. Now back to Molly talking about her family's experience with COVID.
Molly Schreiber 19:37
So I'd had my two doses that are that had the Pfizer vaccine I had an April and May and then I actually got a third dose that they're not calling it a booster but a third dose and August because it wasn't that six months but they offered it to patients that were immunocompromised this is I know there's so much has come out from the FDA and the CDC this probably was a blip But that
Stacey Simms 20:02
now remember, right? Yes,
Molly Schreiber 20:04
it was a blip and but it was a big blip for me. And so I went and got a third dose all along. I had participated in a research study through Johns Hopkins, which I know a lot of patients have done in, they were just trying to see efficacy in the vaccine with patients with different kinds of autoimmune conditions or health conditions. And so they tested your antibodies before and after each of your vaccine doses. So with my first two, I didn't have any antibodies. I got my third dose so quickly, because I was so excited that happens hadn't been ready with their lab slips yet. So my rheumatologist tested me in November, and showed that I still didn't have antibodies. And I found that out the week before Thanksgiving, and she said, you know, you really need to just stay in your bubble. And I'm like, I've been in this bubble for a long time. But like I mentioned, I have a family. You know, my husband works at the airport, my son works, my daughter goes to college. But luckily, everyone, like you said, We're maths, they're all vaccinated and boosted. Everybody was good. We daughter's college was getting a rise in cases, and they switched exams to online. So my husband ran down and grabbed her right, the week and a half before Christmas. And then that Saturday before Christmas, we all thought a little off. And knowing that there are monoclonal antibodies that I could maybe get, if I were to get COVID, I've been instructed multiple times by all of my doctors, you know, you get these if you get COVID, call us, we took a test, my husband was positive, I was positive, my daughter and my son, and I didn't see it coming, like I said, grabbed my daughter and brought her home and gave her COVID. Right. At school, I really missed the mark as a parent on that one. But it's not a cold, it's not a bad cold. It's not what I guess a lot of people are sharing, at least it wasn't for my family. And I know that I mentioned that I didn't have any antibodies, but my family dead, they're healthy. They're my daughter's 18, perfectly healthy, and had the 102 Fever, the vomiting, the cough, the body aches like you couldn't imagine. And I the sounds so awful to say but they actually understand a little bit of what our eye fatigue is now, because it was so intense with with COVID that I just said, you know, when you felt like you didn't have that extra oomph to pull on. That's what it's like. So I did get a little taste of that. But now, you know, we're about three weeks out doing so much better. But I'd be lying if I didn't say it was a little scary, you know, at times, especially with where our health system is right now.
Stacey Simms 22:43
I'm so glad everyone is doing better. I know so little about Ra. So forgive me if this is a dumb question. Are there lingering issues or concerns that now you have to think about in terms of what medication you're able to take or anything like that, because of having COVID?
Molly Schreiber 22:57
There are so with my rheumatologist, we've been kind of you know, going back and forth. I'm incredibly thankful for portals because I could send messages whenever I had energy, it was great. She said that there's a couple things to be concerned about. She said that they've seen that a lot of patients with autoimmune conditions tend to shed the virus longer so that I'm going to say 10 days I know now it's five days, whatever it is, right? When you listen to this podcast, whatever amount of days it is that they're saying you need to quarantine for, they're saying that they're finding that patients like myself can shed it longer. So that is a concern for you know, if I were to say, Hey, I'm good and you know, go to the party I haven't gone to in many years, that's a concern for the public that the other thing is because I could still be shutting it. They're not sure when to start my biologic backup. And so basically, we're kind of going week to week my rheumatologist just wants to make sure I have zero symptoms, just not even a cough or runny nose. Nothing that could you know, taking something to oppress and suppress my immune system, you know, could trigger and so there's there's that but really, it's just the twofold wanting to keep others safe of them still shedding, you know the virus longer because like I said, we missed Christmas and my mom, you know, was like, well, when can I come up? And I'm like, I don't know. I just don't know and I'm never gonna put her at risk. So I think there's still as awful as it is so many unknowns right now.
Stacey Simms 24:34
How Okay, nosey question you don't have to answer How were your blood sugars? Was it difficult to manage? Did you do okay during all of this,
Molly Schreiber 24:41
so that is how I knew it was coming honestly, I think a lot of patients would probably identified that they could tell Oh, I should have known I was gonna I was getting sick, my blood sugar's are higher but my family got very sick that weekend. And on that Sunday, kind of boasting that the one with no in bodies just had a runny nose, you know? feeling great. And that night, my blood sugar started going up. And for me, you know, I'm home, I work from home. Like a lot of people, I kind of have a routine, you know, if I eat or drink, you know, that boring stuff that you can do with diabetes for a long time. And so my blood sugars are pretty good. Of course, there's random days for you're like, What in the world is happening, but this was consistent. This was, you know, I'm not eating something. And I'm just high, you know, it is just higher than normal. And the next morning that Monday, I woke up with 102 fever and felt awful. I actually used I mentioned earlier that I had a steroid personal profile in my pump for when I do get infusions, they come with that infuse steroids, and it has a higher basal rate and a little bit more of a carb ratio in there. And I put that on when I was sick. And so that helps with keeping my blood sugar's under control when I just wasn't feeling well enough to even deal with my pump. Honestly, I was very grateful that I already had that setup. Might be a little too aggressive. I'm not sure. But it was nice, because I don't think I would have had the energy to think through a whole new basil program.
Stacey Simms 26:13
Yeah, definitely. I totally understand that. And it's funny, as soon as you said, you look back at those blood sugars. Oh, yeah, I should have seen it coming. I mean, Vinnie said diabetes for 15 years. I can't tell you how many times we still say oh, yeah, three days?
Molly Schreiber 26:26
Oh, I still do. I've had it for over 30. And I'll be like, should I know that was coming? I've only been through this a million times. Right? Oh, it's always after during you're like, why am i Hi? She makes no sense. And then the next day or like,
Stacey Simms 26:42
you know? So, as you said, You've lived with type one for 30 years, you were diagnosed in a family that was familiar, but at a time you said 1989? Where I'm guessing, you know, my recollection, home meters are just being introduced that sort of thing. Tell me a little bit about your Dad's experience with type one, if you don't mind.
Molly Schreiber 27:01
Yeah, my dad. So my dad was diagnosed in the late 1950s. And so my dad was in the time of boiling needles of no blood sugar testing at all, a lot of guessing. He would say just living his life as a teenager without thinking much about diabetes. He got there serious about his diabetes a little bit later. But because he had sort of grown up in this non technology way of managing type one. He thought it was great that I eventually got meters, pumps and everything. But they weren't for him. CGM weren't for him, nothing was for him, he would see the value for me that it was never. But it's funny when I see that funny, but I look at kids now. You know, I remember. And it's still a fear, but it was a strong, you know, fear of my, my own children getting tightwad, you know, I just, you know, you don't want anyone to experience anything that they don't have to. And so looking back, you know, I didn't have a meter at school, because we had a home meter that sat in the bathroom, you know, I had a snack every day, you had to eat your snack at the same time. And I that was my like, big cool thing about having type one in elementary school, but I look back and you almost have a moment of going, how did I survive all that, like, I didn't have this thing beeping on May 24/7, to tell me what my blood sugar was doing. And I went to gym class and I, you know, I, I survived. And so I a lot of that, I'll look back on you know, when technology fails, or you know, a server's down and all this, I just think back to the fact that I would go to school all day, without a meter with a pack of graham crackers, you know. And I'm still here, and I'm okay. And my dad, on the other hand, my dad, he learned sort of a way that I think a lot of people with type one, including myself, you can kind of slip into where you're very regulated, you know, dinner has to be at 630 because your body has to eat it. You know, and our pumps and everything and our short acting insulin have really given us flexibility, but my father was very regimented, because that was how he survived. You know, that was the insulin they had that was knowing how much food to have in his body at certain times. And so even my husband jokes that family dinner time is 630 because when he came into my family, that's what my father did. That's when he had to take insulin.
Stacey Simms 29:34
Did you say your grandfather had type one? Yeah. So
Molly Schreiber 29:37
my, my grandfather, my dad's father had type one as well. He passed away, right? Shortly before I was diagnosed with type one due to complications, but you know, it's so varied. I don't really even know. At that point. He never would have even experienced a glucose meter.
Stacey Simms 29:56
He diagnosed you know, the date or the year.
Molly Schreiber 29:59
So my dad was born in 48, January of 48. And I believe his father was mid 20s, when he was born so early, a long time ago, and so my dad got it. They used to tell him that diabetes always skipped a generation and a sex. Have you heard that I'm sure you have. And so my cousin who's female has it as well. And that really fed into my dad's thinking of that my dad was the oddball that if he hadn't gotten it, it would have fit the, you know, the mold would have followed the program, you know, but he really blamed himself that I got type one, he really, you know, for a long time, it was really hard for him, but he's also the one who knew to test my blood sugar. You know, my mom took me to the doctor 10 times, and I poison ivy that gave me type one of all the things I got poison ivy, and then just stopped eating and got out, went to the bathroom a million times, and my dad got frustrated and tested my blood sugar. So he didn't see it that way that he had saved me, he thought that he gave it to me. So it's a heavy emotional burden.
Stacey Simms 31:14
It's really hard. Yeah, such an emotional experience. And that's, you know, it's so difficult you think about the tools that that generation didn't have, and how they they did the best they could,
Molly Schreiber 31:22
yeah, so my dad, he, you know, had a bad low when he was living on his own. And this was back in 2015. And he fell and hit his head. And, you know, my father had had a onesies bill of five. And when I say that he lived a very regimented life, he did because that fear of, you know, what could happen if you didn't manage your diabetes was very prevalent, you know, for him growing up. And you know, he had laser eye surgery at Hopkins, when they were still testing on monkeys, like he had a very real fear of losing a limb and more, you know, really suffering. And so he managed himself extremely tightly. And that came with a lot of lows, you know, and we'll all say that your agency is only reflective, you know, of the broad range, you know, it doesn't show the 30s, you know, that you had, and even growing up, he had bad lows, I have many recollections of ambulances coming to the house. And so he had a bad low has had and was admitted to a nursing home, because he just wasn't 100% Ready to care for himself. So just rehab sort of the the problem is, and kind of mentioned this with technology. So we have the tech, right, we have glucose meters in every office everywhere. But even the nursing home staff didn't understand what type one was. So he would tell them, I need my insulin transferred from the hospital without any insulin, she would say, you know, be put down as non compliant. One of our favorite words, right, because he wouldn't eat because he knew his blood sugar was high, but they wouldn't test it, they wouldn't give him insulin, they thought he was just like a type two. And if he wasn't going to eat, he didn't need any insulin. And they would reference him and he said, it doesn't matter what type I am, I need insulin. To the point that, you know, he, no matter how much education we tried to provide, no matter how much he tried to provide, on his end, there was even one night he called an ambulance from his nursing home bed for insulin, because he needed insulin. And the true story is he ended up in DKA from this, and he passed away from it simply because nursing home staff and I'm not generalizing, I personally have not been in a nursing home, but I can only go by his his information of what's happened and others have shared, they simply didn't understand that insulin, you know, is, is air and water for us, you know, we need it, we cannot live without it, and ended up in DKA and didn't come back. And that all stemmed from lack of understanding diabetes, which has been around forever. I just mentioned my great career, my grandfather, it's been around a long time. And so it's really important to me and I, I've talked with a lot of fellow diabetics who are, you know, and early 40s. And we've talked and it's a real fear. And that kind of comes into COVID. You know, what if you end up in the hospital, and can't manage your own disease? And so I think that that's a real fear, even today, you know, if you get COVID, if God forbid, you know, need to be on a ventilator or just are unable to care for yourself what happened?
Stacey Simms 34:36
No, it's absolutely terrifying. And I know that sharing that story is not something that you do lightly. You know, it really is amazing to see these concerns. I don't know how well they're being addressed. All we can do is keep talking about them, and keep educating. So thanks for bringing that up. I do appreciate it.
Molly Schreiber 34:54
Yeah, I don't have the answer. Like you said that. I think we'll figure something out of everyone just shares and
Stacey Simms 35:00
Before I let you go, I do want to ask you about your job because you're, you know, we've been talking what we basically talked about for the last few minutes is patient advocacy. And that is something that you are you're doing in your job day to day with savvy, tell me a little bit about what this organization is and what you're doing.
Molly Schreiber 35:15
Yeah. So savvy, cooperative, founded by two patients to Jen is in the juvenile arthritis space. And Ronnie are other co owners, the cystic fibrosis space and like myself, like probably a lot of people you know, and even you to have had the pleasure of being at, you know, the different tables, you know, pharma tables, companies that are trying to make products better for, you know, all types of different health conditions. And eventually, like myself, Ronnie, and Jen found themselves looking around the table and you see the same faces. And I've met some great friends that way. But are, you know, are all the white women at the table really representing the patient voice of rheumatoid arthritis? You know, and we're being asked questions like, well, what does someone do you know, when they can't afford rent or medication, I am privileged enough to not know what that feels like. And a lot of people are in So Jen, and Ronnie just said, What can we do. And so they started this Co Op. And what that means by a co op is a co op is owned by its members. So we're literally a patient owned organization. And what we do is, quite simply, what I just said, is try to bring every voice to the table, try to have, you know, if a product is created for the HIV community within the HIV community to be at that table, creating that project, you know, and that product and medication and treatment. And so that's just like a very nutshell of what we do.
But we basically have people come to us, and they want to know more about a health condition, or they have an ideal treatment, or medication or an app, or a variety of things. And they asked us to find the people and maybe do the research and do the interviews, and at the end products and ideas and medications or treatments are being co created with the patient, rather than the patient at home seeing a commercial and going well, if they'd asked me, I would have told him that doesn't work. benefits, both the company and the patient. And thing I like to share that's a great example of what we do is a lot of people have heard of Amazon, I'm going to go ahead and assume and maybe even Alexa, and they did a study with us where they wanted to improve Alexa so that people would voice impairments, like stutters and different things could communicate better with her. And now they have a patch that anybody can get add into their Alexa. And it lets more people use that technologies here. And so that is just a small example. But I think it's a great one, you know, showing how something that they took to actual patients and had patients use and give feedback now benefits the greater world and all patients. And so that's what we do, I realize I give a very, you know, nutshell, I work in communities and the community director, which means I get to talk with patients and partners organizations all day, which is a great fit for me because as a patient, which is gathered by now, I really wouldn't want any patient to not feel like they're part of the community, and that they're alone in their journey or that their voice isn't important. So if you know one person hears this, and it's like I've already in diabetes, which I'll reference the great Rick Phillips did for me years ago, made me feel like I wasn't the only person that had those conditions. And if that happens because of this will Stacy, you've done a huge job. I haven't been here.
Stacey Simms 38:57
I hope that happens. It's really as we've learned over the years, right? How just knowing that there's somebody else out there going through the same stuff makes a huge difference. Just one more checking if I could with your family. You mentioned you picked up your daughter, you know you wanted to keep from having coverage came home Scott COVID. How's everybody doing now?
Molly Schreiber 39:14
Everyone's doing okay, much, much better. But it's not lost on me that anyone can get this again at any time. So we're staying in a safe and our masked bubble for now.
Stacey Simms 39:25
Gosh, well, thank you so much for joining me it's so much fun to talk to you. I just you know I have to mention I remember when we first met I don't know why this just popped into my head maybe it's cuz I was I just miss traveling so much. Did we meet in Chicago
Molly Schreiber 39:37
at healthy freshmen airport? We I was
Stacey Simms 39:41
Yeah, I was wearing that blanket thing that I wear like really heavy winter coat anymore. Yeah, we met in the airport in Chicago. Geez.
Molly Schreiber 39:50
Yeah, that's where we met and I it was one of those great moments where you're like, I know you but now I actually know you you know like, it's like my honor. Lying knowledge and then by in person, which is the best because you really know people then
Stacey Simms 40:04
isn't that the time when there was this thing going around the internet, the kids probably call it a meme. But there's this thing going round where it was like, the only really good thing about the internet sometimes is when you meet someone in PR person that you know from online, it turns that first meeting from a handshake to a hug.
Molly Schreiber 40:20
Yes. That's what it is. Yeah. And I do now right now, I picture us waiting for our car together. years ago, too many years ago, because we've been traveling so long.
Stacey Simms 40:34
Oh, my gosh. All right. Well, here's to travel in the future. At some point, Molly, we will grab that cape blanket thing out of my deep recesses of my closet and we'll we'll meet again.
Molly Schreiber 40:45
Yes, we well.
Stacey Simms 40:51
You're listening to Diabetes Connections with Stacey Simms. I will link up more information about a lot of what Molly talked about there, including information about savvy cooperative, yes, that is the group that I have linked to in some emails. And in the Facebook group, a bunch of you have signed up to take part in their research studies. So if you're interested in that, be on the lookout, when it's relevant to our group, I will definitely share that with you. And sometimes there are opportunities to get paid, which is always nice.
It was fun to think about travel again, by talking to Molly and I have some things tentatively on the calendar, you know, you're always afraid now to you know, we got to make plans. But who knows. So I'm excited. In March, I should be going to Syracuse, I have an event at Syracuse University. This is an annual or at least it was before COVID and annual alumni event that I always have a lot of fun in. I'm trying to set up some kind of diabetes event as well, maybe for moms, maybe for families. So I'll keep you posted on that. I am talking to some local diabetes people in the Syracuse, Central New York area, and hopefully we can work something out.
Then at the beginning of April, friends for life Indianapolis is on registration is open. I still haven't pulled the trigger on that I haven't committed to going yet. But I'm pretty sure I'm going to maybe you can help me make up my mind. I think I'm going to be there. But regardless of me go if you're in that area, this is a great regional conference. And the hotel has like these train car rooms. It's a train station that's now a hotel. Definitely check that out. And looking down the road. There's gonna be some local events here in the Charlotte area in April and May and then it'll be friends for life in Orlando in July. So I'm hoping that there will be more in person events as the year goes on. Cross your fingers and hope we stay safe. Man, I'm not sure that it's I'm ready to say anything about a return to normalcy, but it would be a lot of fun to just see some people again and make those connections that you can make them online but there is just you know, as you know, something so different about him person, and I missed that. I miss that a lot.
Alright, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you for listening. Wednesday, it is in the news. Don't forget I do this every week. We are live on social media and then it becomes a podcast episode that'll be out on Friday, just five or six minutes of news in our community. And next week's interview. Have you heard about the Sigi pump? This is a brand new insulin pump. It looks like it's going to be a competitor to Omnipod. There's some really cool features. It's not here yet, but I'm talking to this company about why they are trying to bring it to the US as soon as next year. We'll see what happens with the FDA and everything else but man this pump is really cool. And I can't wait to tell you more about it. Alright, that is all I am Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.
Benny 43:44
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
It’s time for one of our favorite episodes of the year! Wait Wait! Don’t Poke Me, the diabetes game show! Taped this time around for the Children with Diabetes Friends for Life fall conference.
If you’re familiar with NPR’s Wait Wait Don’t Tell Me, a lot of this will sound familiar, just with a diabetes twist! Our panelists tackle trivia, limericks and we try to "bluff the listener" with tales of diabetes in the wild. Can you guess which Olympian with T1D really had a wildlife encounter?
Big thanks to our panelists: Nia Grant, Kyle Banks and Matt Point. They all have a connection for FFL and took time out of their busy schedules to goof off with me. There is a video version of this show over on our YouTube channel if you prefer to play along over there.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode transcription coming soon
With Thanksgiving almost here and the winter holidays around the corner, we know that diabetes stress is about to ratchet way up. The D-Moms are here to help! Moira McCarthy joins Stacey to talk about everything from holiday travel, long car rides, well meaning relatives and holiday gifts centered on T1D. And of course, FOOD!
Get advice to keep your children with T1D safe and happy so you can make terrific memories without freaking out about "perfect" blood sugars.
Previous D-Mom Holiday advice here
Adults with T1D give their take on the holidays:
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode Transcription below:
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:20
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:26
This week, Thanksgiving is almost here and many holidays just around the corner. Ask the D moms is here to help more McCarthy and I answer your questions and share our own stories to help you make more wonderful memories with less stress, even if that means doing things differently for a special occasion.
Moira McCarthy 0:44
And the reality is in this long, long, long, long, long lifetime marathon diabetes, you need to just chill a mile here and there. And by doing this and saying to your children, we're going to turn this off. This is okay. Don't worry about it. You're fine. You're modeling that for them and you're giving them the confidence and the courage to know that they can be okay. Yeah,
Stacey Simms 1:06
she said turn this off. She's talking about something I dare to say and do about Benny's CGM. We also talk about long car rides well-meaning relatives and holiday gifts centered on diabetes.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm your host Stacey Simms always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And yes, this time of year. I mean, it's the holidays are stressful without diabetes, right. But I'm already seeing in my local group, the stress ratcheting up, somebody said to me the other day that they feel like even though they're not necessarily doing more than they did before the pandemic as more people are venturing out and traveling. They feel like they're really busy. And I think a lot of it has to do with the fact that we haven't been very busy for the last year and a half, really. So there's gonna be more pressure on this holiday season. There's going to be more travel, there's going to be I don't know, it'll feel like higher stakes and especially if you are new to type one, that first year those first holidays, those first milestones are incredibly stressful. So Moira and I are here to help you out you probably already know. But just in case Moira McCarthy is a dear friend of mine. She is the author of many books about raising kids with diabetes, including the amazing raising teens with diabetes, which has that fabulous photo of a teen rolling her eyes right on the cover. I love that cover. You'll hear how long her daughter Lauren has lived with type one. She's a very successful adult now living on her own. And if you are brand new, my son Ben, he was diagnosed almost 15 years ago. He is almost 17, which is really hard to believe so most of my stories have to do with the early years. We're not out of the teens yet, and Moira will help kind of pick it up from there. And I always look to her for guidance as well.
One funny thing about Thanksgiving this year, we have a set menu, right? We have our traditions. My husband is the cook in the family and we've always hosted Thanksgiving. He does something a little different every year, but it's really up to him. But Benny has been working in a grocery store for the past six or seven months now. And he is really jonesing for a sweet potato casserole with marshmallows, which we don't usually do nothing do with diabetes. It's just not our style. We generally save the marshmallows for dessert. But my mom who makes our sweet potato casserole every year has valiantly stepped up and says she will make one for him. Because at the grocery store. He has been seeing the display and he's like Mom, it's just sweet potatoes, brown sugar, sweet potatoes, marshmallows, sweet potatoes, brown sugar, like they have this. And he took a picture that I saw the last time I was there. I mean, it's one whole side of a produce display. So this poor kid, he is really dying for that that marketing worked on him. He wants those marshmallows. My daughter is the canned cranberry sauce person, right. You know you make that beautiful, homemade cranberry sauce with the whole cranberries. Are you you boil it down? No, we have to have it in the can with the jelly lines on it. I prefer that as well. I have to admit. Alright, Moira and I talking about real stuff just a moment.
But first Diabetes Connections is brought to you by Gvoke Hypopen. Our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing – we’re usually able to treat those with fact acting glucose tabs or juice. But a very low blood sugar can be very frightening – which is why I’m so glad there’s a different option for emergency glucagon. It’s Gvoke Hypopen. Gvoke HypoPen is premixed and ready to go, with no visible needle. You pull off the red cap and push the yellow end onto bare skin – and hold it for 5 seconds. That’s it. Find out more – go to diabetes dash connections dot com and click on the Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma – visit gvoke glucagon dot com slash risk.
Moira, welcome back. I am so excited to talk to you What a week. I didn't even think about this when we planned. This is a big week for you and Lauren,
Moira McCarthy 5:04
it is yesterday, October 28. At 2:35pm was exactly her 24th diaversary. My daughter has had type 1 diabetes for 24 years. I can't even believe it. It's crazy.
Stacey Simms 5:22
But I have to ask you the time had you know the time.
Moira McCarthy 5:25
So I don't know why I know the time. We were at a doctor's appointment, and I know what time the appointment was. And I know what happened when I got there. So I don't know. It's just drilled into my head. And then there's people I meet that are like, I can't even tell you what day my kid was diagnosed. But for some reason, it just stuck with me. And as a little kid Lauren, like celebrating every year, so I sent her flowers yesterday. No, I don't care. 24 hours or so give us Do you
Stacey Simms 5:51
mind, maybe just a little bit of how she's doing maybe a little update. If this is someone's first time joining us for Deimos.
Moira McCarthy 5:57
I'd be happy to so my daughter Lauren was diagnosed. Well, I just said the date. So basically the beginning of kindergarten when she was six years old, right after her sixth birthday. I can remember feeling like the world was gonna end. But we had a really great medical team from the beginning who were saying to us, you are going to live the life you lived before. We're just going to add steps to it. And Lauren at six years old was saying I'm gonna lead you're not gonna, you know, let this hold me down. Now has it been all rainbows and butterflies? Absolutely not. We have had challenging days. We've had challenging weeks, we've had challenging years in her teen years. But right now, I think, well, first of all, what everybody cares about most is her physical health. She is 100% healthy. She has the labs that a person without diabetes would have if you checked, you know, her kidney and her eyes and everything else. Emotionally, she's really doing great. She has a long struggle with burnout. But I think she really has figured out a way to deal with that when she recognizes it coming up. And the most important lab of all I always say is she's incredibly happy. She has an amazing career and lives in the middle of Washington, DC all by herself, and I don't follow her on share. And I never worry about her. She has 8 million friends and I couldn't be prouder of her and the life that she is building as a young adult. So that's where she's at pretty good. Right? Despite diabetes, that's fine.
Stacey Simms 7:28
I love hearing that, as you know. And as you listen, you may know, I have followed Moira and Lauren story for many, many, many years since before more and I knew each other. So I always kind of look ahead. It's like my time machine of what could happen with us. Where could he go? And of course, he's never leaving our hometown, going to a scary place far away like DC he's gonna He's going to live here. And
Moira McCarthy 7:51
Sunday dinner every week
Stacey Simms 7:53
is nice. That's so nice. So I'm glad she's doing so well. Like you're doing so well. And you know, gosh, I heard something recently about diversity that made me smile. Instead of the diversity you're you're on the new level. So Lauren has reached level 24.
Moira McCarthy 8:08
I like that. That's really funny. And her boyfriend is a big video gamer so he'll like that.
Stacey Simms 8:13
Oh, that's good. Yeah, Benny's approaching level 15. And I am one of those people who I always have to look up the date. I just know it's the first weekend of December, but I never. Yeah. Alright, so we are in that time of year where it's not just our kids diver series. It is holiday time. And after I rewound the Halloween episode that we did a couple of years ago and I got a lot of questions and people asked us to do a follow up for Thanksgiving and looking ahead to the winter holidays. And I got some great questions. So I was wondering more if you wouldn't mind sharing though, you know, the first holiday season that you and Laura and your whole family had to address this you guys want a very different routine? Yeah, we can be a little more difficult but would you mind sharing what that was like that first year?
Moira McCarthy 8:59
I will and and I think it's good to hear because it can help people see how far we have come daily care for this disease. We may not have a cure yet, but what it looks like on a day to day basis is completely different. So Lauren was diagnosed in October so Thanksgiving was our first big holiday and I remember we were going to my in laws and back then you took a moderate acting or we called it long acting, but it was really middle acting insulin called NPH that peaked a bunch of times during the day and then you took regular which you had to take it wait 30 minutes and then eat exactly what you had dose for it exactly 30 minutes which was super fun with a six year old child I will tell you and no waiting in between. So I had reached out to my in laws ahead of time and asked them if they could work the meal around the time that it would work best for her to eat and they said yes and I I move some things around with A doctor to kind of compromise with them, you know, so we changed what time we gave everything starting, like two days before to be ready for Thanksgiving. And then we showed up and they were like, oh, yeah, we decided on a different time. Oh my gosh, the world is ending. But the world didn't end. You know, we figured it out. We got through it. What I will say for these holidays, for people who are new to it, it's not always going to feel this scary and confusing and daunting. I think the first 12 months, you go through every holiday, every special event, every family tradition for first time. And then the second year, you're like, Oh, I remember this from last year, and it gets a little better. And then the third year, you're, you're sailing. That's my theory, and I'm sticking to it.
Stacey Simms 10:43
I would absolutely agree with that. I also kind of suffered and I'll say suffered from this feeling out of the box, that it had to be perfect. Because I remember one just show everybody that we were okay. Especially my mom, I wanted her to not worry. And know that we were we were just fine. And for some reason that got tangled up in my brain by thinking this has to go perfectly and I can't make a mistake. And of course that lasted about three
Moira McCarthy 11:06
seconds. Yeah, we're really with a toddler with type one, and you want to put together a perfect Thanksgiving. Why don't we do that to ourselves, though, you know, but feelings of control at a time when you feel like you've lost control?
Stacey Simms 11:21
Night? Exactly. Alright, so let's get to some of the questions that came in. I got one in my local group. And this was about travel. And the question was, we're driving along distance. And I guess we could talk a little bit about flying or other modes of transportation. But this particular case, we're driving along distance, you know, six or seven hours to a relative's house. Any ideas or tips for helping me and the question here was about stable blood sugars. But I'm also going to kind of throw in there. How do I make this trip? easier on the whole family? Yeah, I'm I have a lot of ideas that maybe you do too.
Moira McCarthy 11:56
Well. So I guess my first idea would be for special occasions and events, stable blood sugars aren't the most important thing ever. I don't think there's anything wrong with trying, of course, we want to try but the first thing I'd say is if it doesn't go perfectly, that's perfectly fine. I am quite sure if you ask your medical team to help you with the plan. That is one of the things they will say to you. That's the first thing. So I mean, what did you do on long car rides? For us it I don't remember it impacting her blood sugar that much, you definitely have to have snacks in the car and like more than you ever think you're going to need in your life, because you never know when you're going to get stuck in a traffic jam from a car accident or something like that. You know what it is be prepared, and then you don't need it. We tend as a family, not just for the person with diabetes, but for everyone to try to stop every 60 minutes and get out of the car and stretch and move around and breathe fresh air and then get back in. I think that helps
Stacey Simms 12:56
us How about depressive we don't my husband would have fit? No. So in my
Moira McCarthy 13:01
father, he would never do that. That's probably why I do it. I grew up driving from Minnesota to Massachusetts and like never being allowed to get out of the car. So
Stacey Simms 13:10
I would say for us we actually did struggle a lot with long car rides, because we did a lot of trips, especially to my parents in Florida, which is like a nine or 10 hour road trip. And we found that Benny's blood sugar would go very high. Just you know, an hour or two in the car and looking back, it's probably because toddlers never stopped moving. So his insulin dosage was all based on constant activity. So when he was sitting still, just looking back that's my assumption. Also, as you mentioned, you know everybody's eating in the car
Right back to our conversation, but first Diabetes Connections is brought to you by Dario health. And, you know, we first noticed Dario, a couple of years ago, we were at a diabetes conference, and many thought being able to turn your smartphone into a meter. It's pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gets you all the supplies and support you need to succeed, you'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it. And personalized reports based on your activity. Find out more go to my dario.com forward slash diabetes dash connections.
Now back to the D mom's and I'm talking about what we did when we realized Benny's blood sugar would always go pretty high in the car.
What we did was talk to our endocrinologist about adjusting doses giving more insulin when he was in the car, giving more insulin for food when he was in the car. And that was a real trial and error for us because, you know we have to be really conservative about that you're not going to be changing basal rates by enormous amounts and so it may not quote unquote work the first time you do it, but I think you know we're doing Talking about stable blood sugars, I hope that this person means is like maybe kind of sort of in range. You know, when I see somebody talking about stable blood sugars, I usually think like, it's not going to be a steady line at 95, right? We're just trying to keep them from skyrocketing and staying there. And even if that happens, which happened to us a ton, it's fine, and you fix it. When the baby was younger, and the kids were younger, I was much more mindful about healthy eating. You know, they're 19 and 16. And it's like, they buy half their own food. Now anyway, I don't know what they're eating. But we used to get coolers the big cooler, and fill it with, you know, healthy fruits and veggies and hard boiled eggs and carrot sticks. And you know, and then of course, everybody would want to stop for fast food and ruin everything. Right?
Moira McCarthy 15:39
So I made the assumption, and perhaps I shouldn't have that by stable, she meant within that range. If this mom is suggesting that her child should have a straight line across my answers quite different. I have no idea going on the assumption that what she means is within their range. And my answer was based on that what I meant was, if you go above your range, or below your range, I think it's okay. I don't think that if you're going to celebrate with a family, the most important thing is, is staying in your blood sugar range, I think the most important thing is enjoying the time and loving your cousin's and running around and having fun and staying within a an area that is safe. And by safe. I mean, you're not you don't need to get in an ambulance, I guess. And maybe my advice would be talk to your medical team, take some ideas that we have on your idea, I think that's a great idea. My only caveat would be the doctors probably going to want you to err on the side of your child being hired. The first time you do this, as you mentioned, you did it after some trial and error, I'm not sure a new parent to diabetes should just, you know dial way up on their kids insulin because they're going to be in the car for nine hours, I think you should take it slowly and go a time or two or three and see what happens. And then make decisions like that after that. But for now talk to your team. They're they're going to say what I said, and they're going to support you and say, Don't worry about going out of range. You know how to do corrections, here's when and here's why to do a correction and then take it from there.
Stacey Simms 17:12
And like you said, some kids sit in the car and nothing happens. Right? They don't go super high. That's why can't do
Moira McCarthy 17:17
assumption, right. That's why you have to wait and see what happens. One quick
Stacey Simms 17:22
thing about the car that I learned the hard way you mentioned about you know, be prepared for traffic be prepared for you know, delays, if you have and we all do I think have a you know a diabetes kit. Make sure it's where you can reach it, especially if your child is very young, right? I mean, there's a lot of kids, they're older, they can have it the backseat with them. I'll never forget packing everything we needed and leaving it in the trunk or like the way back of the minivan. And then we were delayed. And I'm like I need a new inset like says it was leaking, or we'd like crawl through the car.
Moira McCarthy 17:54
That's a really good tip. So put it
Stacey Simms 17:57
up to the front seat with your pack, even if you just pack a couple of things. And we had so many car adventures. Okay, the next question, I loved this one, because this just I could picture this one I know you can do more. So Deborah said we are in the first year of diagnosis, I just realized I don't know what to do about our Christmas cookie tradition. We make a bunch and give them to relatives we usually eat as we go. Can we still do this with diabetes child is eight and is on multiple daily injections, so no insulin pump yet.
Moira McCarthy 18:26
So my answer is eat all the cookies, bake all the cookies, visit all the friends have all the fun, click your fingers if you want to. But then wash your hands, have all the fun and check in with your child's doctor. And what they're going to say is go do all that check at the end of all the fun. If you need a correction, here's what we'd like you to correct. And here's what we'd like you not to correct for they may not want you to correct because sometimes these things involve a little adrenaline high. And again, first times you have to see what's going on. But just have all the fun. Fix it later. If your child gets high during it, it's no big deal. If they get low, you've got cookies. There's an old saying it started with Kelly crewneck, who's a very well known person on the diabetes world on the internet. And she said people with diabetes can't have cookies, dot dot dot with poison in them. Right? The only cookies you can't have.
Stacey Simms 19:26
I think that's fantastic. And it took me back listening to that about we know we don't have a Christmas cookie tradition. But we certainly you know, I think most people with little kids love to bake. And it's just such a fun activity to do with them. And in the first couple of weeks with shots, it was so difficult. You know, Binney ran away from us. He didn't want anything to do with it. But after a little while, he didn't really care as long as we didn't make a big deal and make him stop what he was doing. So and we bought after, which I know is like bananas that people admit to bolusing after these days, but I think it's so much less
Moira McCarthy 20:00
Streisand gets really super smart, particularly with a small child.
Stacey Simms 20:04
And so for something like this, like we would bake, and then I would kind of try to estimate like, what did he licked the spoon? Did he eat the crumbs? You know, when you do a guess? And in my case, I would always get a little less because he was teeny tiny. And then we would eat the cookie, and a couple hours later, we would correct and move on. Now. I don't know, I feel like the fun as you said, the memories of that time, you know, outweighed the quote, unquote, out of range blood sugar, I'm sure his blood sugar went out of range. And he might have been low, because they sometimes they just get really excited. And you know, he might have been high, but he's, they're healthy.
Moira McCarthy 20:39
You know what, I think this, this mom, and anyone who's considering these kind of questions over the holidays should think about too, when I look back on Lauren's life, these 24 years with type one included, I don't remember that her blood sugar went higher low. I don't remember what her diabetes did one day, I remember that the cookie swap was fun. And so that's why I think it's important to focus on the fun, within reason with a kid with diabetes, you know,
Stacey Simms 21:12
oh, yeah, that's a great way to put it. And I'm realizing as he gets older, I have a lot of those same feelings. I'm so glad it didn't stop us. I'm sure at the time. My heart was pounding, right, especially at first, I'm sure I was worried. I'm sure I was thinking, Am I doing this the right way. But look, you know, you have those fabulous pictures and those great memories. So that's a great way to put it. Alright, so let's talk about well meaning relatives. More Hi, Moira. And Stacy. My aunt thinks she knows everything about diabetes. She has type two and is always lecturing me about not letting my second grader eat, quote, bad foods. Holidays are the worst. I'm sorry to laugh, because she wants us to have sugar free desserts. There's so much going on. In that question.
Moira McCarthy 21:59
Bless her heart, right. You know, I mean, what do you do? It would depend on what kind of person she is. And if they have, if they have a relationship that she could, I would call her ahead of time and say, Look, we're working on adjusting Stevie's life, whatever the child is, and, and there's a lot of things he's dealing with right now. So I'm just asking you, if you have anything you want to say about it? Could you say it to me now over the phone before we go, and let's just avoid talking about diabetes other than Hey, how you feeling? I'm really glad you're doing well at the holiday because I don't want him to feel sad when he has all this on his mind. That's a great way to put it. Who knows what she'll do. Right, right.
Stacey Simms 22:45
I mean, you have you have well meaning relatives who want to help you have nosy relatives who think they're helping, it all depends on my mother for the first year or two she wants to make she makes one of those sweet potato casseroles, not always with marshmallows, but it's got a ton of sugar in it. And so she made it sugar free. And I didn't really notice but it's not something Vinnie was going to eat much of anyway. Yeah, when he was he was three at his first Thanksgiving with diabetes. But she meant well, but what I found worked over the years, and I still use this, even though he's his own advocate. Now, I really found that saying, Our doctor says, which I made up, but our doctor says helped everything. So I would say to somebody like this. Oh, you know, thank you so much for thinking about my son. I really appreciate it. I gotta tell you things with diabetes have changed so much now. And our doctor says that he can eat these foods and as long as we can dose with insulin, you know, we know what we're doing. He's helping us or our doctor says that Thanksgiving should be a date, like every other day or whatever it is. But people would never listen to me. Listen to what my doctor
Moira McCarthy 23:46
says my my words for that was always her medical team. Yeah. sound very official, our medical team is me. But they don't need to know that. The one thing I'll say, though, is it's also okay, if it's not super aggressive, and really out of line. I think it's also okay to teach our children to show some people a little grace. And sometimes and all this even when people are wrong, maybe at the family thanksgiving, or Hanukkah, or whatever party isn't the time to say, Do you know what I mean? Great. And so if someone makes a sugar free thing, and your kid hates sugar free, you say to your kid, please just put a tiny slice of that on your plate and then push a couple pieces around under something. And it'll be fine. They met Well, yeah, you know, yeah, say and then afterwards, you can say hey, he really liked that. But FYI, next time, you don't even need to do that make the same delicious pie, but you don't need to make it sugar free. Right
Stacey Simms 24:41
on everything. And that's a good point. Because we're so in our society today, we're so ready to fight. We're so ready to be on the defensive. And so I think that that's a great point just to be able to say we really appreciate it. We know how you meant it, you know, just thanks and then have the discussion later on. Yeah,
Moira McCarthy 24:57
but if they're over the top aggressive about about telling your child what they do wrong with their diabetes, then you need to have a conversation ahead of time. That's right.
Stacey Simms 25:04
Or you know, even in the moment if this sometimes you see, you know, I made this for these kids who don't have diabetes and look at this wonderful vegetable plate I made for your child like they're having cupcakes, but you could have the carrot that it's okay.
Moira McCarthy 25:17
It just jello Jaguars. My daughter was locked up. I always have to bring a tray of jello jugglers This is before acting. And
Stacey Simms 25:25
that is so funny. I'm so sorry for sugary jello. jigglers Woohoo. Oh, my gosh. Okay, another question. How do I dose for all of the grazing that goes on during Thanksgiving and holiday gatherings? This is kind of similar to the Christmas cookies, or I would think our answer is going to be but in some homes, right? It's not just one set meal. It's we showed up and we're starting to eat and we don't stop for seven hours. Oh, yeah.
Moira McCarthy 25:51
My house isn't that yours?
Stacey Simms 25:53
Isn't? No, no, no.
Moira McCarthy 25:57
Not every house was like that on a holiday. Seriously, this is interesting. All right, well, I guess I'll answer this first, then talk to your medical team. Ask them about planning different times during the day for check ins. And then just let your child have what they're going to have. And at the check in times that you agree with your doctor, it may be every two hours, it may be every three hours, it may be twice I don't know. They'll they'll help you decide. You see where they're at. You look at what's going on what they're going to be doing next. And then you do a correction of corrections needed. That's it.
Stacey Simms 26:31
Go, I'm going to add a layer to that. Yes, please do. For those who are addicted. I don't know anyone like this. I certainly have never been like this anyone who's addicted to their Dexcom. So if you're listening to more thinking, how am I supposed to check every two hours when the Dexcom or wherever three hours, whatever the most no more thinking how am I gonna check at those intervals, when my Dexcom is blaring every five minutes, okay, stay with me, people consider turning your Dexcom high alarm off, and then look at your child's Dexcom High Alert off, and then only looking at it as recommended by your care team. It will take away an enormous amount of stress. Even if your child goes high. And you bolus it's not going to happen right away. You know this, it takes a long time for insulin to work, right. So you're not really doing yourself any favors by checking it every five minutes. I know it's hard. Ask your doctor. But that has helped me more than the years when I was glued to it listening for this a lot.
Moira McCarthy 27:34
And you know, I think that's really wonderful advice. Because there's nothing wrong with freeing up the family to enjoy a good time. If it's so important to you that you keep them in a certain range and you want to watch it all day, then go ahead. But I think what you suggested and what you just said you do is such a good model for your child, because as you care for your child, you're modeling how they should care for themselves later. And the reality is in this long, long, long, long, long lifetime marathon diabetes, you need to just chill a mile here and there. And by doing this and saying to your children, we're going to turn this off, this is okay. Don't worry about it, you're fine. You're modeling that for them. And you're giving them the confidence and the courage to know that they can be okay. If they're not doing, you know, 150%. So I love that answer. Stacy, you get a gold star. Yeah,
Stacey Simms 28:34
it's funny to think about, but that's actually how we use Dexcom. And how everyone use Dexcom intil. Gosh, I'll probably get the year wrong. But until, let's say 2015 Because Dexcom share did not exist, right? So at school, our child would like many others basically used his Dexcom receiver as a no finger stick monitor. Right. So at the time of day were Benny would normally have done a finger stick, he just looked at the receiver showed it to his teacher. And that was it. We started using it like that. So I think it makes it a little easier if you come home from the hospital, like a lot of families do attuned to every alarm. These things may seem like an astronomical ask, but you really can do it. And I would also add with the grazing, we you know, we were grazing experts, because I had a two year old with type one who was diagnosed. I mean, a few years after Lauren, so you know, was not on that very regimented timing. So Benny could pretty much eat all day, like a normal two year old. I mean, obviously not all day, but you know what I mean? Several times a day, and we just had to give them fast acting. So it makes it it does make it a little more difficult, right? It's not but it's not something you do every single day, either. So I think that you know, you've got to kind of let go a little bit, but it's not harmful and it can make these ladies have these wonderful memories. Alright, and finally, this question, I'm a little stymied by this one. What's the Christmas present for a child with die? beedis
Moira McCarthy 30:01
Okay, a good Christmas present for a child with diabetes is what they put on their Christmas list. If you want to give diabetes related gifts for Christmas, that's all good and fine. I knew someone who gave their child quote unquote, their insulin pump for Christmas and like, their heart was in the right place, and the child felt great, but it just made me a little sad. I guess if your child puts insulin pump on their Christmas list, though, that's different. But even then I think I'd say no, Santa doesn't need to bring you medical stuff, we can just get that went whenever you need it. There are toys and animals and things like that. If someone's interested in actually, diabetesMine is having me do a list of them that's going to run in late November, early December. We can link that on this after Oh, that would be great. Like
Stacey Simms 30:54
the American Girl doll stuff and road kid kits. Fabulous.
Moira McCarthy 30:59
And then I don't mean that there's anything wrong with that stuff. I just think that you should give your child gifts that they want as a child, not as a child with diabetes. Yeah,
Stacey Simms 31:09
I think a lot of that depends on how your family celebrates and what gifts you're giving. We are We joked in our family for Hanukkah, when I was growing up, you would get everything from the toy that you really, really wanted to the dictionary that you did not ask for to the socks that you need it right so if your gift giving is like that mixed up, and it's you know, if your family expectation is that kids will get super useful stuff in all the kids not just the kid with diabetes, then I guess I could see it. But I'm with you, I think unless it's something really fun like one of those add on what your list is going to be made up but like, what are those stuffed pancreas like? silly things like that. And yeah, accessories for dolls and fun stuff. It's just like a useful medical thing. I think you've got to be very careful and know, the child like especially a parent to a kid is one thing but if you're like the fun and or you're the family friend thinking this will be a big hit. I just be a little careful. One of the things I saw in another group was you know, there's a newly diagnosed child which they get the family and the most popular response was don't get them anything quote diabetes related, get them fuzzy slippers, and a gift certificate for babysitting or you know a trip to the movies and get them something fun and engaging.
Moira McCarthy 32:22
Get them something normal and and pushing back on what you said I still even if my family did that stuff, I still wouldn't give my child like a box of syringes. So core. I like if you're giving your kids toothpaste for Christmas, because that's what you do, then give your kid with diabetes toothpaste for Christmas treats the same way you treat your other kids when it comes to gifts.
Stacey Simms 32:42
That's a good point. I think if anybody ever gave Benny any diabetes related gifts, and no one would ever mind my family would have ever done that. But
Moira McCarthy 32:49
one time in our family Yankee swap, I used a syringe box, like for the gift and whoever opened it thought it was syringes and we're like, I don't get it. And I'm like, Oh, for goodness sake. It's just a box.
Stacey Simms 33:03
Open it up. Is a Yankee swap like a Secret Santa.
Moira McCarthy 33:07
Yeah, kind of but you you could take gifts away from like a one white elephant. I don't know. I'm sorry. That's a white Jewish lady. It's like we're from different worlds, Stacy.
Stacey Simms 33:21
Oh, you New Englanders.
Moira McCarthy 33:24
Bless my heart.
Stacey Simms 33:26
We do have one funny story. So on Christmas day in Gosh, I'm looking back already. This was this is eight years ago. So on Christmas Day, we started the Dexcom. The very first time we ever used the G four platinum. Vinnie was nine. Oh no, the g4 Platinum pediatric. So Vinnie was nine years old. And we were sitting around a Christmas day at my mom's house like you do. And we said, let's start the Dexcom. Why don't we will put it on we had been instructed on how to do it. Of course, again, I don't know if I can emphasize this enough. We do not celebrate Christmas. I don't think I would do this. Christmas. So but we put it on and I will never forget because that was you know, Christmas Day. Gosh, so yeah. Merry Christmas kid. That was the big horrible insert or two.
Moira McCarthy 34:14
But then it could have Chinese food before the movie, right?
Stacey Simms 34:18
Really my house.
Moira McCarthy 34:21
I know you.
Stacey Simms 34:23
That's great. So normally at the end here, we talk about where we're going in the diabetes community. Of course, you know, there's no diabetes events going on now. And I'm really, really hoping they come back next year. But I mean, I'm doing some virtual events. I'm reaching out, but I cannot wait to be in person again more.
Moira McCarthy 34:39
I feel you. I can't believe I was just thinking about this the other day because my Facebook memory was, I guess right before the pandemic I was in Buffalo, New York speaking at a big diabetes event at this time and they were all these pictures and people posting about interesting things they learned and how happy they were going to be and I was like, oh, I want to go back somewhere. I think we're We're gonna see things start bubbling up I do believe friends for life is going on this summer I'm hoping I'll be there I haven't heard yet but um I know that's probably happening and I think JDRF is going to start doing some smaller half day programs in the near future knock on wood so I hope we're in the same place to Stacey that's what I hope not only we get out and speak but you and I are in the same place.
Stacey Simms 35:22
Yeah. Oh my god,
Moira McCarthy 35:23
it's all about us.
Stacey Simms 35:26
Why not? I was kind of pausing because I don't remember when we saw each other live to look that up. At the end of the show.
Moira McCarthy 35:33
I think it's been at least two years Stacy that's really weird.
Stacey Simms 35:37
It has to be it has to ah, I miss you.
Moira McCarthy 35:40
Me too. We talk every day practically. I miss you as a as a human life form.
Stacey Simms 35:50
Well, the next time we get together we can we can do a Yankee swap.
Moira McCarthy 35:52
Yeah. And and a white elephant, white elephant.
Stacey Simms 35:57
Well, if I don't speak to you have a wonderful Thanksgiving, enjoy your family and your adorable grandchildren. And give Lauren my best and tell everybody we said hi. Same here
Moira McCarthy 36:07
and make sure those kids yours know that I still think they're awesome.
Announcer 36:16
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 36:21
I will link up some information, including to an episode we did with adults with type one and their take on Thanksgiving. I'll put that in the show notes along with the transcription for this episode, you can always go to diabetes connections.com. Every episode starting in January of 2020 has a transcription. And there's lots more information there. I got to tell you more. And I make it sound pretty easy now, right? But those first couple of years, it's so stressful because you're trying to have a nice holiday. You're trying to project confidence, you know, we're doing great. Diabetes won't stop us. And then you're freaking out, you know, what did you eat? Should we pre bolus what's gonna happen now? Am I gonna be up all night? You know, it's, well, you know, who's got the carb count? Is it accurate? Spoiler, the carb count is never accurate. It's never accurate. I hope you know that. We're estimating everything, even packaged foods. Even somebody who weighs in measures, everything is a total guess, on carbohydrates. So just do the best you can. And it's you got to get through that I think you've just got to get through that experience. There is no other teacher like experience and diabetes, you've got to make mistakes, you've got to kind of be upset, you gotta be worried you got to get through it.
But if you let yourself I think as a parent, you really can get to a place where you're like sure marshmallows on sweet potatoes, we can figure that out and go from there. And if you hated my advice to turn the Dexcom off, let me know I would love to hear from you. You can yell at me all you want. Let me know if you try it though. And if it works for you, I don't want to cause more stress. I promise.
Diabetes Connections is brought to you by Dexcom. And hey, listen, I'm all about using the technology in a way that helps you thrive with diabetes. So when I say turn it off, it's not a knock on Dexcom. It's sharing how we use it to help us make great choices. Live well and be happy. I stand by that you know we have been using the Dexcom system since he was nine years old. We started back in December of 2013. And the system just keeps getting better. The Dexcom G six is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G six has 10 Day sensor where the applicator is so easy. I have not done one insertion since we got it but he does them all himself, which is a huge change from the previous iteration. He's a busy kid, knowing that he can just take a quick glance at his blood glucose to make better treatment decisions is reassuring. Of course we still love the alerts and alarms and that we can set them and turn them off how we want. If your glucose alerts and readings for the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections.com and click on the Dexcom logo.
A couple of quick housekeeping notes we will have a regular episode next week. Our regular episodes are on Tuesdays. So we will have one for you next week. We will not have an in the news edition of Diabetes Connections. Thanksgiving week though. I will not be doing that live on Wednesday and there will not be an episode Friday the 26th I will say if anything really big happens if we get an FDA approval, you know something like that. I'll probably pop on and give you an update. I you know, I know we're all waiting for something so I can't promise I won't do it. It's not it's like the news person in me I was in you know, I've been doing this since I was 19. So if something breaks, I'm gonna have to jump on. Even if Slade is like, you know, making turkey behind me. We'll figure it out. But right now again this week, the week of the 16th. We will have the regular in the news on Wednesday, which will become an audio only podcast on Friday. The following week. We will have a regular episode, but there will be no in the News episode Thanksgiving week. All right. With that thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening I’m Stacey Simms I will see you back here for in the news this week until then be kind to yourself Diabetes.
Benny 40:10
Connections is a production of Stacey Simms media All rights reserved. All wrongs avenged