There's a lot of overlap between type 1 diabetes & celiac disease, including how hard it can be to get a diagnosis. People with T1D are thought to have ten times the risk of developing celiac and even more have a sensitivity to gluten. Ann Campanella went for years knowing something was wrong with her little girl and being brushed aside until she finally found a doctor who took her seriously. Ann shares her story in her new book ““Celiac Mom”” and takes some time to talk to us about her story
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Episode transcription
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:22
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28
This week, if you live with Type One Diabetes, you have about a tenfold chance of developing celiac and there's a lot of overlap in the communities, including how hard it can be to get a diagnosis. Ann Campanella went for years knowing something was wrong with her daughter until she finally found a doctor who took her seriously.
Anne Campanella 0:47
I mean, he listened to me which was wonderful for the first time I was not nervous mom or you know somebody who was just like, she's always got some issue with her child but the child is fine. So it was just great. Have somebody listen and go Yes, you're right.
Stacey Simms 1:03
Ann shares the rest of her story in her new book “Celiac Mom” and take some time to talk to us and tell me something good. The Renegade run is back I'll explain. And a bunch of diaversaries with some interesting ways to celebrate.
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 so glad to have you along. I'm your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, right before he turned two he is now 15 and a half my husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast.
A little bit of a different focus of the show this week in that I'm talking about celiac, which does not affect everybody with type one, but I felt like Anne's story in particular really resonated and really reminded me frankly, about our own story, I think you'll hear a lot in and that perhaps you have gone through, even if you do not have celiac if you do not have a gluten sensitivity, and that's why I want her to come on the show. She's a terrific author as well. And we talked about some of the other books that she has written.
Speaking of authors, I'm just gonna take a second, I have to tell you some news about my book, “The World’s Worst Diabetes Mom”, huge thank you, to those of you who have told a friend about this, who've purchased the book and then posted it somewhere on Facebook. Because you know, with the book tour being totally canceled this year, it really changed what we had expected. Although, gosh, I gotta say, I'm so grateful. I'm going to knock some wood here. It's just been going great. We already hit the year long sales goal a couple of months ago. I mean, it's very exciting stuff, but that's not why I'm bringing it up. I'm bringing it up because I just want to mention the book to clinic program. That is something new and different that I started earlier this year.
I had a pediatric endocrinologist and CDE certified diabetes. Educators asked me about the book because a couple of groups purchased books and provided them to their local peace endo clinic, so that a newer diagnosed family would get a free copy of the book. I mean, how cool is that? I kind of wish I thought of it. I didn't. But once I saw it, I knew we could help. I have some wonderful sponsors who have signed on to make this work. Most recently, I want to give a big thank you to Glucose Revival. They make the Thrive necklace, a big thank you to Pump Peelz, our very latest sponsor. And of course, the people who started me on this Frio and T1D3DGear, I'm going to link up all of their stuff in the show notes, please visit these wonderful sponsors. I'm looking for groups like that people who are small businesses, let's say in the diabetes community, and this is a very affordable way to get your message out. And of course, I'm now in the position where we're looking for clinics as well. So if you’re a health care provider listening, if you see families touched by type one, we want to give you some free books, so please Reach out and let me know you can find me on social media Of course, Stacey at Diabetes Connections.com.
Okay, let's talk about celiac in just a moment. But first Diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the slickest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team and also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plan, pick as many test strips as you need and they will deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes Connections comm and click on the white drop logo.
My guest this week is the author of “Celiac Mom” and full disclosure She's a friend of mine, formerly a magazine and newspaper editor Ann Campanella is the author already of two memoirs and four collections of poetry. Her first memoir, motherhood Lost and Found has won numerous awards. And it was named one of the best Alzheimer's books of all time by book authority. I've known Ann and her husband Joel and their daughter, Sydney since our kids were young. Of course, I knew Sidney had celiac, but I never knew the story behind her diagnosis. And it turns out, she was diagnosed the same year that we found out that Benny had type one diabetes.
Now look, obviously everybody who listens to this show and lives with diabetes doesn't live with celiac, thankfully. But there is a lot of overlap here in terms of having to advocate for ourselves to trust our gut, no pun intended there and to transition to a new type of life after diagnosis. So real quick, just to make sure we're all on the same page here. If you don't know celiac disease is a genetic autoimmune disease. It's not a food allergy. It does cause damage to the small intestine. It interferes with the absorption of nutrients in is a serious deal. It's not a joke. I think that's another overlap that we have with diabetes and celiac that people just don't take it seriously. I was really happy to talk to. And so here's my chat with author Ann Campanella, and thank you so much for joining me. This is gonna be so much fun. It's nice to talk to a friend for the show.
Anne Campanella 6:19
Absolutely. I'm so excited.
Stacey Simms 6:22
You know, I was struck reading “Celiac Mom”, how difficult the beginnings of this story are. And I want to talk about that and how you got to where the great place where you are now. But let me start by asking what prompted you to write the book in the first place?
Anne Campanella 6:34
Well, you know, I think one of the reasons that this book just poured out of me was because, as you said, I don't think most people had any idea what I was living through. And, you know, you can talk about, oh, I wasn't getting sleep. Oh, my baby was not happy. She was crying, and people just sort of pat you on the head and go, Oh, you're a new mom. Everything will be fine, but writing that book was a way to go, you know, I want to get this whole story out, really for others who may be coming after me and experiencing this.
Stacey Simms 7:10
So let's talk about what happened early on, as I said, even having known you, and I know and I know Sydney as the healthy happy Sydney that she is now. Yes. What were those signs?
Anne Campanella 7:20
Oh, my goodness. Probably the first one was as a baby. She did not sleep. everybody around me who had new babies. They were like, Oh, my baby's sleeping 12 hours a night, 11 hours a night, 14 hours a night. Sydney would she would barely sleep six to eight hours, and then I could not get her to nap. And at the same time, I was caring for my mom who had Alzheimer's. So I was I didn't even know if I was coming or going. And in the beginning, she woke up like every hour on the hour. And again, people said Oh, she's teasing. thing or it's this or it's that. So that was one of the earliest signs, but I had no idea it was a sign right when she got a little bit older. Joel love to eat cereal, he pour a huge bowl of cereal so they would do the exact same thing. And five minutes later, she would be on the couch holding her stomach. In addition, I could see that she was bloated most of the time. And she just she had these teeny little arms and legs in this big stomach. And I thought, is she eating too much? You know, it was that big bowl of cereal more than she should eat. And as a new mom, I just had no clue. You know, was this normal was this not but then as she got even older, I knew that something was really wrong because she wasn't growing properly. She was basically head and shoulders shorter than all of her classmates and all of her friends would be growing in by inches and she was barely mean she was In the same clothes for like three years, so those were some real good signs.
Stacey Simms 9:05
You know, it's, it is obviously very different from type 1 diabetes. But we, so many people in different communities get these doctor's visits where they'll say, oh, it isn't that it's this or, you know, we don't need to check because this is just the flu or she just needs to grow into it. Or, you know, every kid grows differently. And I'm curious, I know, you heard that a lot. I did. What was the tipping point for you, though, where you finally got the answer?
Anne Campanella 9:33
You know, I guess I was, I was on alert constantly. And I did. I loved my family practice doctor. She was fantastic, with so many things, but she just didn't have the knowledge about celiac. And Sydney also had one of her symptoms was constipation, and that sort of the opposite of what a lot of kids have have diarrhea. So that didn't tip her off to it. Every single visit, I would ask I would talk about stuff. I was also searching on the internet. You know, day after day, when everybody went to bed for the short times that he was asleep, I'd be checking things out. But I actually had a friend who had, I think it was her niece had growing issues. She knew Sydney, she had known her as a baby, and she would hear me talk about my concerns. And she said, you know, and there is, you know, a doctor in Charlotte, who can deal with some of these things. He was an endocrinologist, and there were various factors that she felt like it might be worth seeing him. And as soon as I got that information, I was like, we are going to that doctor. And he is the one who very quickly I mean, he listened to me, which was one Wonderful for the first time I was not nervous mom or you know somebody who was just like, Oh, she's always got some issue with her child, but the child is fine. And so it was just great to have somebody listen and go, yes, you're right. If this isn't dealt with, she's going to be four foot eight. And thank goodness, he was able to rule things out. And then he sent me to a pediatric gastroenterologist who did an endoscopy. And that is what set us on the course to know for sure that she had celiac. We had blood tests done and the blood tests were so borderline that they did not show anything definitive. So that was something that was just dismissed. But when she had the endoscopy, the doctor said she had severe scarring. So even though the blood test, which everybody's like, Oh, just get a blood test, you know, you'll find out that did not give us the information we needed. The endoscopy, told us everything, and that they took samples of her small intestine. And the doctor knew from the moment he got in there and started looking. He didn't even have to wait for the test. He's like, she's got celiac,
Stacey Simms 12:15
obviously, look, you and I are not doctors, we can't give medical advice. Right? Every borderline blood test is not going to lead to a positive result from the endoscopy. But I think it's a great point to bring up that if you're still not certain if you know, this is something that, again, we don't have this experience. But if you get the blood tests back, even though it was borderline, did you have to push for it or did the doctor say you know, to be sure, you know, I'm curious how you still got the endoscopy.
Anne Campanella 12:41
I definitely had to push for it. Now, the doctor that the endocrinologist he was happy to do it. But in order to get to see him through the medical system, I definitely had to push because they were ready to just dismiss it. Which I guess you know, maybe that's the For a lot of people, but it did make me think, goodness for all this moms who know intuitively that something is not right. It's so important to just keep pushing and you know, to go for what you know, will help your child.
Stacey Simms 13:15
So tell me about the transition. Obviously, when you get a diagnosis, we want to help our kids, we want to do what's best for them. But I laughed out loud when I read in your book, and here's a quote from it. She says, I have never been a cook. In fact, Joelle or husband and I survived for years on a diet of microwave dinners and take out food. So a woman after my own heart, I was the exact same way for many years before I had children. I didn't cook at all really, how do you make the transition from going out for Italian food bringing home big bready subs to what I imagine was a lot of food prep and cooking after this diagnosis.
Anne Campanella 13:56
You know, it was horrendous. To be honest, it was so hard and I love hearing that you are not a cook either. Because you get this. And I feel like it's sort of like, God has a sense of humor. You know, I went in thinking went into motherhood thinking, well, I don't have to cook, I can get through this. And then he just turns things on. It's his head or my head. And it's like, no, you're gonna have to cook every single meal for the rest of your life and just see how that is. But how did I do it? I will tell you Stacey. It took me a good year before I felt comfortable at all. And I think I started the transition with just going oh my gosh, I have got to find something to feed my daughter. You know, I literally thought she was going to starve because I didn't know what to put on our plate. I figured out five meals. Okay, what are five meals that I can Give her that she will eat. And she actually she was starving. That was another symptom that she had. She was always starving, she would eat one meal. Five minutes later, she'd be asking for a second meal. And I'd be thinking, what is the deal? You know, am I creating a child who's going to have eating disorders because she, she wants all these meals. So we went from, I tried to find the meals that I used to pick up. Like, if it was Italian, like spaghetti, okay, spaghetti can't be too hard. And I found rice pasta and had to go searching the labels on spaghetti sauce to make sure that there was no gluten in them.
Stacey Simms 15:46
So we should also jump in and say this is 2007 Yeah, while it was probably better than 1987 Yeah, certainly isn't what we have now. Oh my gosh,
Anne Campanella 15:56
no, it's it's so much better now. You can actually go to regular stores and find gluten free food. Back then I went to the one health food store. And, and it was funny because it's health food. But basically the thing that they had most that was gluten free was cookies and brownies and cake and still defined actual meals. That was a challenge. I mean, you really had the search. And like one of the things I learned was, chicken is not always safe. It's often processed with gluten. And so for a couple of months, I was feeding Sidney chicken for several meals thinking, Oh, I'm doing so well. But she still was bloated. And as I was reading and researching, somewhere I ran across Oh yeah, chicken and there's a couple of brands that are safe, but most are not. So once I got her off of chicken, she actually sprouted that summer like three years. Four inches.
Unknown Speaker 17:01
Wait, I did I miss something?
Anne Campanella 17:02
Why would chicken have gluten? fresh chicken has a processing and it's processed with some kind of wheat flour or something that's in it. And if you read real carefully and it might be modified food starch or some other name that denotes wheat or gluten. Chicken is dangerous for people with celiac.
Stacey Simms 17:24
I mean, I have to ask even closer you're talking about plain old naked chicken, not chicken nuggets, right?
Anne Campanella 17:31
What? Chicken out like Purdue chicken is safe. But I don't even know what other brands but basically brands of chicken that you find wrapped up in the supermarket, and they haven't been cooked yet. Most of them are not safe. So if you go to a restaurant, and you order chicken, and some restaurants, they don't even know and they'll say oh yeah, things are gluten free and they're not And again, it's not a huge amount. And I should back up and say, people with celiac, it varies how allergic allergic is not really the right word, but how sensitive they are to gluten. But for Sydney and most other people with celiac, the tiniest crumb will set off an allergic reaction or the reaction that causes the immune system response. That's amazing. Who would think
Stacey Simms 18:27
so what were your five meals? Do you remember? I can imagine you'd ever forget.
Anne Campanella 18:32
Oh my gosh. Well, it's funny because we branched out since Oh, yeah. But spaghetti. Spaghetti was probably three of them. is sad to say. And when Sydney started going to school, because I'm not a cook, I would just make a huge pot of spaghetti and feed her meals of spaghetti like for lunch and it was so sad, poor child. That spaghetti was one chicken pox. pie that was like my big thing but I would make two of them at once and I could find gluten free pot pie crust for the bottom. And then I would just dump chicken and broth and vegetables into the pot pie. So it's it was not like this fantastically tasting, good tasting potpie but it was decent and Sidney loved it because she didn't know any better. And then I would roll out a crust made from like rice flour. So that was one and what else hamburgers. I could get Joel to cook hamburgers on the grill and I would just steam up some vegetables. I did have a chicken and rice meal. That was my mom's and I just changed a few of the ingredients that that's probably that about covers it maybe scrambled eggs. That was another really easy one.
Stacey Simms 19:54
What happened to her once she started eating gluten free you had to have sort of a big physical
Anne Campanella 20:00
Oh my gosh, the change was incredible. And it just, it made me feel like no matter what I had gone through, it was worth it. She went from being this child. And I didn't even know that this was not normal. But she went from this child who would hang out on the couch, reading all the time doing puzzles, being very sort of quiet to somebody who like would run around the house. She couldn't wait to get to the park. She had so much energy, her face went from this pale expression where her eyes look bruised to this sort of just a constant joyful quality in her face and in her skin. And then her growth was just incredible. She went from being so tiny to just being normal sized. She's not super tall now, but Within the normal range is five, three. And she started playing basketball. She had energy to do things. We used to take her to the park before this and like we bring her bike and she ride for a little bit and be like, I'm tired. I want to stop. She just was irritable. Oh, the other thing, the biggest thing she slept on the first day that I was able to eliminate all the wheat from her diet. She slept through the night, for the first time. I knew that. I will actually I didn't because I was so used to waking out. And I went and checked on her like, Is everything okay? But I was gradually able to sleep which was just like, oh my goodness, this was amazing. So that was that was probably the most wonderful other than it I mean, everything else was wonderful too, but to have her sleeping and just thinking oh my gosh body is working normally now. And it was incredible how quickly that happened
Stacey Simms 22:04
during this time and your wonderful writer and you've written about your experience with your mother and all timers disease, this was all pretty much going on at the same time was it How were you handling all of this?
Anne Campanella 22:17
It was, oh Stacey, I was a mess. I was truly mean I was caretaking both ends of life. And oddly, my mom and Sydney had the same sort of needs. Like I remember having to bave Sydney having to wash my mom, having to feed Sydney, having to feed my mom trimming their fingernails at the same time. And I was going back and forth. Part of the time my mom lived at the coast near my sister, and then eventually we brought her here and I was bringing Sydney with me to visit my mom. And that was a sweet time because Sydney would like To push her wheelchair around, and my mom would, you know, Pat her on the head and they could play ball and do little things like that. But it was so tough. And I think maybe that was part of what made the story hard for me because I, I was so concerned about my mom, because she was close to death for a long time. She had Alzheimer's for 14 years. And the last, gosh, seven years of her life, we kept thinking we were about to lose her, and then she would hang in there, but I feel like I wasn't really thinking straight, wasn't sleeping. Well, I was just existing. But at the same time, when Sydney came, there was this incredible joy and, you know, this new light a new life. And so it really helped balance the two I guess.
Stacey Simms 23:52
Your book about Alzheimer's disease is very well received. You know, you've won awards. It's a beautiful book. I know you've been kind of in that world for a while. I'm curious. When you're writing a book about your child, it's a different experience altogether. Were you nervous about sharing that story? I mean, you've shared such personal things already. I guess that's what I'm trying to get to. But when it comes to your child, it's a little bit different. I'm curious what your reaction to your own writing and sharing it about Sydney has been.
Anne Campanella 24:22
You are so right Stacey and I'm sure you have had the same experience. It is so different and as I was writing this, Sydney was she's now 18 but as I was writing this, she was 15 1617 and not as mature and not really wanting me to share very much so I just felt like I had to be so careful not to share things that she wouldn't be comfortable with my dash n even the book became “Celiac Mom”. Because I wanted it to be about my experience of parenting her, rather than me trying to say everything that she went through, even though I included that, and we have a place up at Lake George New York. And last summer, when I had the whole manuscript written, I read it to her out loud out loud. She's a busy teenager. And the last thing she wants to do is sit and listen to mom's writing. So she was a captive audience when we were driving up to Lake George and I thought, okay, I'm just gonna read this and this will also give Joel a chance because he's in the book to, to hear it. And it was a great time to do it because we were having sweet family time, but I was able, wherever there were any places that she was uncomfortable with, I could take them and edit them a little bit and, you know, just askers Are you comfortable with this? And amazingly, now that she's a teenager She is fine with it. And she's excited that the story is getting out and she wants it to help people. So I'm just so relieved about that. That's wonderful.
Stacey Simms 26:10
How is she doing? I mean, she must be very independent. I know that college doesn't look like it's supposed to for anybody. So instead of going to school, she will be virtually learning at home this year. But I imagine that no knocks on your current cooking. I don't know what's going on. I imagine that she can pretty much take care of herself.
Anne Campanella 26:28
Yes, she's actually learned where she can go get take out and she's sort of led the way for the family. And it's wonderful because I've been hanging up my apron and just not having to make, you know, meals that she didn't really care about. But she is doing great. And interestingly, when we were looking at colleges, in my mind, a place that was going to offer great gluten free food was like top on the list, but that was very far down the list for her. She cared about it, but it just wasn't the top thing. She had other sort of normal things that were important to her know like, what kind of programs the college offered where it was, was it a city or was it a country setting? You know how the size of it, it was really interesting going through the process of looking at schools with her and me being it's funny you call yourself “The World’s Worst Diabetes Mom”. I'm probably the most obsessive “Celiac Mom”. So I'm just watching every little thing and telling her Oh, did you see this? Or, oh, this, they didn't have any gluten free food here? And she'd be like, Mom, it's fine. You know, don't worry about it. I can handle it. And eventually I just had to believe it and trust that she could and she has really shown that she can. That's fantastic.
Stacey Simms 27:51
Before I let you go, any advice for families who are newer diagnosed with celiac and listening because I've got to imagine like, just like you You have already said it's a devastating diagnosis. You're so happy to know what's going on. But you really do have to change everything about how you eat and even, you know, down to household appliances, things like that. I assume, right. You have to get rid of yesterday
Anne Campanella 28:14
that yes, new toaster oven. Yes. I mean, we went through our cabinets took everything out and had to replace, I would basically say to take it in steps and stages because it is overwhelming. I mean, we were basically wedded to wheat, my husband and I, and to suddenly step back from that was huge, and it's really a grief process. Because, you know, every single thing in life seems like it's connected to food, and to suddenly think, oh, we can't eat our favorite stuff. We can't do this. You know if you can find support, you can find even one other person who is Going through this. For me, as a writer, I always love to read books. And I love memoirs, because they do take people through, you know, the real experience of somebody's life. So there's that. But finding a real person, a friend, once Sidney had one friend who didn't eat gluten, it just made a world of difference because she was no longer alone in it. So those are some steps as far as the cooking. There are, there are websites and there are so many more resources than there used to be. So many restaurants do offer gluten free menus, and some are safe and some are not. And I would suggest reading the reviews to make sure that people who have celiac feel safe with them. But Gosh, find somebody who can kind of hold your hand as you take those steps.
Stacey Simms 29:55
Well, and thank you so much for sharing your story. I really you I knew some of it having known you. But you know to hear the whole thing is just remarkable. I'm so glad you wrote it. I know it's getting a great reception. So thanks for talking to me today.
Anne Campanella 30:09
It is totally My pleasure, Stacey just enjoyed it so much.
Unknown Speaker 30:18
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 30:24
More information about “Celiac Mom” and about celiac in general over at Diabetes Connections.com. And I know as you listen, you probably have more resources to so if you're in a good celiac Facebook group, if you've got good supportive resources for us, please let me know you can post it in Diabetes Connections of the group or just message me and I'll pass it along. But I think just like there's a really great diabetes community. I know there's a wonderful celiac community as well, that can help. So I'd love to get the word out about that as well.
Tell me something good coming up in just a moment, but first Diabetes Connections is brought to you by Dexcom. And we have been Using the Dexcom g six since it came out points more than two years ago now, it's amazing the Dexcom g six is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. If like us, you have used Dexcom for many years that when you do the two hour warm up, and there's no finger stick, you know the number just pops up on your phone. It's amazing. I mean, it really is a big difference. We've been using Dexcom since he was nine years old, so it's six it's almost seven years now for the seven years in December. It just keeps getting better. The G six has longer sensor we're now 10 days and the new sensor applicator is so easy to use. Benny does it himself. He says it doesn't hurt. Of course we love the alerts and alarms and we can set them how we want. 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. To learn more, go to Diabetes Connections.com and click on the Dexcom logo.
Tell me something good. This week I want to let you know about an event. We talked to these folks a couple of years ago about the renegade run obstacle course race. This year. It's a little different on what isn't different this year. It's the renegade virtual run. This is happening in mid September the 12th to the 27th of September from anywhere in the world. You just complete the different obstacles the different run, jog, walk back in I think series of exercises, and you can complete them anytime you share your photos, your videos, it's a really neat idea. Very creative. I've seen some other things that have switched to online this year. And if people just get so creative with this stuff, you can find out more very easily. I'm linking it all up on the episode homepage Diabetes Connections.com. And when you register, or you donate or you know, whatever you want to do, they will send you all of the information including the list of exercises, so they're trying to make it super simple for everyone. This is a fundraiser as well. They raise funds to support the research that's going on for diabetes at Massachusetts General Hospital. So again, just find out more at the episode homepage.
We have a lot of diaversaries to talk about. We had a woman I'll get her in just a second, Christina posted about her diaversary earlier this month in the Facebook group, and then a bunch of other people chimed in. But the funny part about this post that Christina started, it's all about soda and or pop or whatever you call it coke. It's actually about Pepsi for her. So Christina celebrates her diaversary every year by drinking a Pepsi Diet Pepsi, a real Pepsi. It was her 14th diversity, 14 years with type one and her blog post which I will link up as well. And you can read it if you're in the Facebook group was really great because she talks about how hard it was to make lifestyle changes. And the key was really well it was her but it was sparked by an endocrinologist who didn't scold her or make her feel bad for her lack of compliance. He just urged her to make a few small changes. And he didn't expect her to be perfect. So she talked about how she made these small changes over time. But the thought of never having regular soda again was really hard. So she decided to try to do it once a year. That's what she does every year on her diaversary, she drinks a regular soda. I think it's just an amazing way of looking at things. So I'll link up her blog.
You know, when we think about all of the big stuff that we have to do to stay healthy, it can be overwhelming, I mean, whether without diabetes, but if you take it one little thing at a time and try to make that change, that's really the way to do it, and the only way to last, okay, so within the group, other people started chiming in with I want to try to do this or I think this is a great idea or here's my diaversary Beverly says she's going to do it with a root beer float once a year, and she is marking 55 years with diabetes. Tamara is talking about her three years with type two and she also had to give up diets. Soda her kidney specialist said No way. So they talked about that for a little while. Janice, who I've talked to many times before, has had type one for 65 years and Bonnie with 54 years. 37 years for Robert, I gotta tell you as a parent of a child who's lived with type one for now, 14 years, in just a couple of months, it is incredibly heartening to see all the amazing hard work perseverance and resilience, not perfection of the people who chime in when they talk about living a long life with diabetes. So thank you all so much for sharing that.
And I'll share a quick story about soda for me. I used to love Diet Coke, big time. I never kept it in the house. It was my going out. We're going out to dinner, going out to lunch at work, that kind of thing. I would drink Diet Coke. I never wanted my kids to drink soda so I'd never kept it in the house. A couple of years ago. Vinnie noticed this was probably four maybe five years ago. Gosh, it's been so long, and he noticed how much Diet Coke I was drinking and he knew that it wasn't good for me. And he challenged me to give it up for a month. Could I give up Diet Coke for a month? And I challenge I don't remember what I challenged him, but I gave him something back. And so we agreed we would do it. And I easily gave up Diet Coke for a month I switched to unsweet tea, which is what I still drink, which is hard. I mean, it’s the south everybody always drinks sweet tea and I’m like no unsweet unsweetened tea, please. I can't say I haven't had a diet coke since but it is rare. It is few and far between because you know why? I don't like the taste that much anymore. It's weird how things change, right? It was hard at first. And I really kind of felt that craving. But after a month, it was totally gone. And I know if you're a longtime listener, you know me and Benny, I wasn't gonna let him win that bet. No way. So I thank him for it now because I really don't remember the last time I've ordered one in a restaurant. And certainly the last time I had one, it's got to be months and months.
And just another real quick story. Don't get long here but about sweet tea. So my husband used to own a restaurant he owned and operated a restaurant for many years and He once told me if I ever saw how they make the sweet tea, I would not that I ever drank it, but I would never let anyone I knew drink it again. Because the amount of sugar that goes in there, it's not like oh, a little teaspoon of sugar per glass. I mean, it's bonkers how much sugar goes in sweet tea. I'll try to actually get a measurement of it and ask him about it. Maybe I can post that in the group too. I mean, I know that you're not drinking a lot of sweet tea. I mean, let's face it. This is diabetes podcast, but I don't know about you. I'm always fascinated by that stuff. Okay, back to the diversity. Sorry, I got off on a different tangent there. But if you've got a way that you mark a diaversary or a milestone or something like that, please let me know. You can always email me Stacey at Diabetes Connections.com or post in the group and tell me something good.
Okay before I let you go quick school check in for our family because oh my gosh this year, so so far Tulane is doing pretty well as I am taping this. It's been just a week for my daughter on campus classes did start they have switched to weekly testing. They as I had said in previous episodes, everybody had to be tested before they could step foot on campus. Then it was going to be random daily testing then mandatory monthly testing. They have switched that daily testing continues but mandatory weekly testing They haven't really put out too much about why they said it was in, you know, in consultation with health officials locally. My thinking is also that they saw all of the schools that have already sent kids home, so they decided to step it up. So I'm grateful for that. My daughter seems to be holding up just fine. Of course, everybody's nervous. But you know, fingers crossed. What a bananas year.
This is in terms of online school. Benny's ginormous school district with 150,000 kids is a virtual, and he is doing just fine. He just as I'm taping, he knocked on the door and said, I'm going to take a walk. He has a half hour lunch period. And he's decided to get out of the house for a little while and get off the screen. And I'm grateful for that. But he seems to be doing as well as can be expected. He's a sophomore in high school. He's got some really hard classes this year. He's got an AP class. I am optimistic, but he's a self starting kid. And I think that he'll do fine. But gosh, there's so many kids to worry about this year. And you know, my local district is doing a fundraiser for hotspots and computer access and it's really hard this year. So my heart does go out and We're to do what we can to help out has been a really hard time. But you know, I'm proud of him.
And diabetes wise, I think we're seeing the numbers go up a little bit. It's not for the reason you think he's not stressed out about school, but it is because he was sleeping through breakfast and often sleeping through lunch. And so we're in that nice steady range. You know, he'd wake up at 90, but he was 90 all night and until noon, because he wasn't eating anything. And now he's getting up in school starts at 755. So he's eating breakfast, and he's drinking coffee now and he's eating a little bit of lunch. So I'm just laughing all as well, and I'm really trying not to hover Haha, but I really am in control, like you helps an awful lot too. So I think he's going to do just fine. But it was really funny to see that. You know, if you sleep through your meals, and you don't have to vote this for him, there's a lot less room for error
And supposedly we will have a 504 meeting with the counselor at some point. That should be interesting. I will let you know what the heck that entails when we have virtual at home school, but I understand there's still needs to be accommodations. I'm not joking about that, but I am fascinated to see how it goes. Alright, thank you to my editor john Kenneth from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then be kind to yourself.
Benny 41:19
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