Chronic Hope Book Cover and O'Neill Family


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What is it like to actually give someone emergency Glucagon? What happens next? This week, Stacey talks to Bonnie O’Neil whose son was diagnosed with T1D at age 5 and is now 24. They had a scary situation while on vacation and out of the country. Everything worked out; Bonnie shares what she learned and what she wants other families to know.

Bonnie is the author of a brand new book: Chronic Hope (learn more here). She has a unique family history of diabetes, losing a brother before she was even born and has a older sister who is still thriving today.

In Tell Me Something Good this week, a big honor for one of our favorite frequent guests and fun news if your child plays Minecraft.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

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Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by Daria health. Manage your blood glucose levels. Increase your possibilities by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms

 

Stacey Simms  0:27

this week, what is it like, what really happens, when you need to use that emergency glucagon, I talked to a mom who found out while on vacation out of the country,

 

Bonnie O’Neil  0:37

I was just all I could do to stop my hands from shaking and mix that glucagon and get it in him. So point number one was when you go on vacation, make sure that glucagon doesn’t stay in your hotel, keep it on your person you just never know.

 

Stacey Simms  0:52

Bonnie O’Neil’s son was diagnosed at age five and is now 24. She has advice about using and carrying glucagon. She also has a unique story. She’ll talk about growing up in the shadow of a family tragedy with diabetes, and how she and her sister have overcome that

in tell me something good this week, a big honor for one of my favorite frequent guests. And does your child play Minecraft? Stay tuned.

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 where we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes. I do not have diabetes myself, I have a background in broadcasting. And that’s how you get the podcast.

longtime listeners will know that this show is not really about our experience my family’s experience of diabetes week in and week out. I don’t share a ton of personal information about Benny, but we do talk about our experiences. And I bring that up because I did a show recently with him to mark 14 years, which was a pretty big milestone. And we’ve done a couple of shows together over the years. I always say Benny is a big goofball. But you know, he’s got good things to say I like to talk to him. I’m very proud of him, even though I give him a hard time. And I got a really nice review that I wanted to share. I don’t ask for reviews very often. Maybe I should if you’d like to leave a review, you can send one to me at the email address at Stacey at Diabetes connections.com. You can leave them on whatever podcast app you’re listening to. You can drop them in the Facebook group.

But this one really was nice. And so I wanted to share it and say thank you to Ruth Ann, who posted it following that 14 year episode where I talked to Benny and she says “I listened to it yesterday and came away feeling understood. I’ve had type one for almost 45 years diagnosed at age 12. Then he was honest in the way teenagers can be when they don’t feel pressured to spin things to make other people happy. I found him incredibly inspiring.”

She goes on to write “To me The message was you can be upbeat about life. But don’t succumb to pressure to sugarcoat the hard realities of managing type one. I think being real is the healthiest approach to coping with a challenging chronic illness. Please tell him thank you from a grandma in Utah, Ruth.”

And I will say thank you to you. That meant the world to me. I agree. I think it’s so important to be honest to write that line of diabetes can’t stop you from doing the things you want to do. But it will stop you and slow you down sometimes right not to sugarcoat things too much. I really appreciate you taking the time to write that down and share it with me. And of course, I will share it with Benny and Wow, good luck to you. 45 years with type one, you’re the inspiration. If you would like to tell us something always happy to get nice messages like this. I’m always happy to take constructive criticism as well. I do have a few people over the years who have yelled at me. But I think I’m pretty easy to find either on social media or via the email address. And you can always go to Diabetes connections.com and get all the contact information there. But Ruth boy you made my day

All right, we’re gonna talk about using glucagon what that is like, and Bonnie’s really interesting story in just a moment. But first Diabetes Connections is brought to you by Dario health. You know, over the years, I find that we manage diabetes better when we’re thinking less about all the stuff of diabetes tasks. And that’s why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Dario has published Studies demonstrate high impact clinical results, find out more go to my radio.com forward slash Diabetes Connections.

My guest this week is here to talk about using glucagon and I think we can all From that, but she has another important story that I don’t want to gloss over. Bonnie O’Neil has been part of the diabetes community since before she was even born. bit of a warning, this may be hard to hear Bonnie’s older brother died when he was eight, his type one went undiagnosed until it was too late. Now, this was back in the 1960s. But we know that’s still gonna happen today. Her older sister was later diagnosed, she survived and is still thriving now. And Bonnie has a new book out. It’s called chronic hope. So there’s a lot to unpack here, including that very valuable information about her family’s experience with glucagon. I found this to be a very valuable and eye opening conversation. And I hope you do too. Bonnie, thank you so much for joining me. Congratulations on your book. And I’m excited to learn all about you. Thanks for jumping on.

 

Bonnie O’Neil  5:48

Thank you for having me. I’m excited to be here today. Stacey,

 

Stacey Simms  5:51

tell me about your son. But he’s doing now because he was diagnosed as a little kid. And he is all grown up now.

 

Bonnie O’Neil  5:57

Yes, I’ve lived all the stages with him. So he was diagnosed as a five year old and he is now 24. So he’s living not too far away from me about 15, 20 minutes, which I guess is every T one D mom’s dream when their kid grows up that they live independently, but yet, we can still get our eyeballs on them and our arms around them from time to time. So yeah, he’s doing great.

 

Stacey Simms  6:22

You it’s funny because being diagnosed, what does that 19 years ago? Isn’t that long ago. I mean, my son was diagnosed 14 years ago. But in some ways, it feels like a different world. Do you mind taking us back to that time, if you could tell us the diagnosis story. And I’d love to also talk about what you all started in terms of management.

 

Bonnie O’Neil  6:41

Sure, yeah, that’s actually an interesting story. So I have diabetes in my family. So my brother was unfortunately died in the diagnosis process when he was eight years old. And that was before I was born. And so my parents had me in their 40s, basically to, you know, replace the child that they had lost. And then my sister was diagnosed when she was 16. And I was eight years old. And so I just grew up with it. We grew up with this fear of it being there. So I was always on the lookout for it. And I remember my first pediatrician when I want to have my first child, I said to him, so how do we test for this thing? Because I don’t want it to be in in my child. This wasn’t Austin. This is my oldest son, Alexander. And, and he’s like, oh, Bonnie, you know, it comes on acutely. We can’t just run a blood test every every few months, but you’ll know it if you ever see it, frequent urination, and intense thirst.

And so I was always looking and so the day that I noticed that in my son, Austin, you know, obviously, there’s the major panic, but I had grown up through my three pregnancies, I had done the urine testing for gestational diabetes. And so I knew exactly what to do. I went to the pharmacy, I bought a test kit, and I dipped Austin’s urine in it, and it turns deep crimson. And so I diagnosed him at home freaking out going to the doctor and saying, they’re like, calm down. This is Odile, like it, maybe it’s not type 1 diabetes. I’m like, Well, do you know what else it could be? And so we, you know, I bundle up the three kids and we’re living in Connecticut at the time, I took them over to the pediatrician. And he didn’t have ketones, because we caught it so early. And so their practice was leaning into something that they told me was what Yale was practicing at the time, although I have an endocrinologist friend from Yale, who assures me they never offered, I suggested that, but the thinking was, if your child doesn’t have ketones, you don’t admit them to the hospital. Hmm.

So we went home, we literally went home without so much of the shot of insulin. As you can imagine, I was just freaking out because my brother didn’t make it through his diagnosis story. So I was like, you know if you can remember Terms of Endearment and Shirley MacLaine, like shaky over the crib. Yeah, that was me that night, just like leaning over my son and just making sure all night long that he stayed alive anyway, that the pediatrician, the endocrinologist that my pediatrician was able to find for us was one who really didn’t work with pedes. The youngest children they saw were really about 15 or 16. So we saw him The following day, and the long acting insulin that he gave him was Lantus.

 

Stacey Simms  9:37

I was wondering if that was even approved, because I remember was not really 2000 so it was for little guys.

 

Bonnie O’Neil  9:43

Okay, it was not it was it was not under age 10 and so I don’t I didn’t know any of that you know, and so, so that was the first there’s two things that were very interesting in our in our care different so that was the one and then when we got to CHOP the Children’s Hospital. Philadelphia. A week later, I forgot to say all this diagnosis happened exactly one week before we moved house from Philadelphia. Oh

 

Stacey  10:07

my god,

 

Bonnie O’Neil  10:08

I never recommend that moving house be part of your diagnosis to be that as it may that was our case. And so when we got to CHOP our the endocrinologist there was actually very keen to see know what would happen to this child being on Lantus at age five, I’m pretty sure that it’s going to work out well, I can’t prescribe it. But he came to me that way. So I can leave him on his protocol. So that was interesting. And it worked beautifully. So my son never used NPH. And I had friends at that time, who were very familiar with that insulin and just told me how fortunate we were that he never had to be on that. So that was one thing. And the other was, so my sister, the reason I gave you the backstory on my sister was that I grew up in a family of using exchanges, where you counted your you didn’t count carbohydrates, but you looked at food, in terms of whether it was fat, or protein, or carbohydrate. And you gave each one an exchange. And so I was used to that world. And I literally was given a counting book that had both on it, it was the exchanges and the carbs. And it was kind of you could do it however you wanted. They were recommending I just use the carbs, but the exchanges were there as well. So that was interesting. Oh, and then there’s a third one.

 

Bonnie O’Neil  11:33

But I remember. So his diagnosis was shortly after the DCCT trial, results came out and talking about intensive insulin therapy and how important that was. And I remember several visits, going in and talking to my CDE and saying, I’d really like Austin to be on that intensive insulin therapy. And she would, she would look at me like I had 12 eyes and like to say something, and I didn’t understand what she was saying. And she didn’t understand what I was saying. And it was many months later that I realized that Austin was

 

Stacey Simms  12:11

using Lantus and short acting together. Yes, exactly, was

 

Bonnie O’Neil  12:14

exactly. So yeah. So I was sort of living in some a couple of old paradigms and had to get with the program pretty quickly. Yeah,

 

Stacey Simms  12:22

but what a transitional time. Here was that that he was diagnosed,

 

Bonnie O’Neil  12:26

it was 2002. Yeah. And I’m so thankful I that is it is that so spot on Stacey, because just a few years earlier, and and the story would have been very different. My sister’s story is very different. Sure.

 

Stacey Simms  12:37

And let’s talk about your family for a moment. If we could be there’s so much information there. You mentioned your brother, gosh, I can’t I’m not even sure what to ask. But he died before he was diagnosed or during his diagnosis story. Was

 

Bonnie O’Neil  12:48

this in the 70s? The 80s Yeah, it was 1962

 

Bonnie O’Neil  12:57

Yeah, yeah. So my sister was six years old, my my sister Barb, and my sister Johnny, my brother, Johnny was eight. And so it was Christmas week, and my sister had the stomach bug. And a couple of days later, after she got better, my brother started throwing up. And they assumed that he just had the stomach bug as well. And he may have had that, but it clearly he then slipped into decay. And so by the time he got to the hospital, which was actually New Year’s Eve, what he was in a coma. And so he passed away three days later, to make the story even more unbelievable. My mother delivered my sister Betsy, just nine days after that.

 

Stacey Simms  13:43

Oh my gosh. Oh my goodness. Yeah. You know, DKA is I don’t have to tell you this. You know, it is the most dangerous time for people with type one and it’s amazing to me how now. Gosh, we are you know, more than 50 years after what happened with your family with your brother? Yeah, we are still having something like 30 to 40% of people who are diagnosed with type one diagnosed in DKA, I know you work a lot are you you’ve written a lot with beyond type one. You know, are you involved in efforts? Do you see the you know the DKA awareness that’s something that you you talk about.

 

Right back to my conversation with Bonnie and we are going to hear her talk about glucagon in just a minute or two. And when you hear her talk about the emergency redbox, please remember, there are more options now and Diabetes Connections is brought to you by one of those by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that’s where Gvoke Hypopen comes in. It’s the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it’s easy to use. Find out more go to Diabetes connections.com And click on Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma, visit Gvoke glucagon.com slash risk. Now back to my conversation with Bonnie and I just asked her about her family’s tragic experience with DKA and how that’s influenced her with what she does now in the diabetes community.

 

Bonnie O’Neil  15:22

Yeah, I mean, I do write for beyond type one, and I’m very active with JDRF. I’m on the board of the founding chapter, the greater Delaware Valley chapter. And I know that we’re doing a lot of advocacy work around that and, and even just trying to get the shift in titling someone has type 1 diabetes, a JDRF, has done a lot of work around that, and is seeing that that shift so that it’s, you know, reframing it, so it’s not Oh, they got diabetes, or my son didn’t get diabetes on June 19 2002. That was when we discovered that he would be insulin dependent for the rest of his life. He was developing the disease before that. And so we’re trying to change that language. I think we’re making progress. So that there’s there’s an understanding that you are, you know, certainly with some of the antibody tests, that testing that is being done now to be able to know that, you know, this person’s body is being set up to get the disease, you know, if you have, I think it was three out of the four markers. It’s, yeah,

 

Stacey Simms  16:31

well, and I was gonna ask you about that, about T one detect, we just did a show on that. We did an episode on that a couple of weeks ago. And when you think about something like that a person who has type one in their family, like you had and was so front of mind, I would imagine that you would have taken advantage of that with your kiddos, you know, years and years ago.

 

Bonnie O’Neil  16:48

Yeah. And, you know, back then, and that was something that I asked my endocrinologist was, so should we do any sort of testing and their response, and I had to agree with it was, well, there wasn’t anything that they could offer. Other than Gee, I’m really sorry, it looks like your child is probably going to get type one. So the way I’ve handled it now, as a mother of two adult children who don’t have diabetes, is that decision is yours. If you want to be tested, we can get you tested. If you don’t want to, I have to respect your decision.

 

Stacey Simms  17:25

One of the things I really was looking forward to talking to you about and looking forward as a term I really should not use there. But I was very interested in is you were one of the few people I know who has had to use glucagon on their child, and then wrote about the experience. So I really appreciate you talking about this publicly. It is a fear that so many people have, you know, we have never had to break out that red box. And I’m so thankful for that. Would you share that story with us? You’re even at home, right? You’re on vacation?

 

Bonnie O’Neil  17:54

Yeah. And I’d be happy to because you know, it’s a it’s a story that still brings up a lot of emotion in me, but it does have a happy ending. And there are some good takeaway points for your listeners in terms of preparedness. So yes, I’m happy to share the story. My family went on vacation to Costa Rica. So it was my oldest son’s first year in college, Austin, that would have made him a sophomore, I think in high school and my daughter would have been eighth grade. And we realized that all the spring breaks were aligning all three kids were in three different schools. And we’re like, Yes, let’s go and do something fun. So we plan this, this sort of dream trip, you know, where you’re going to be renting, staying in a treehouse. And like, I’d have some time at the seaside all kinds of great stuff. So adventure, but fun. Yeah, so we get there and the very the very next day, I think we got there like late afternoon. So the next day, spent a little time poolside and then decided to go to this restaurant for lunch that was literally like an oasis on the seashore. So like in the sand cluster of trees and this restaurant was in these trees on the sand. And so it’s just a walk up the beach, it was probably, I don’t know, 20 minutes of a walk.

We get up there. My son Austin actually ordered the only sensible meal he ordered a pizza which is cooked my husband and I ordered cbj which is raw and my other two kids ordered some sort of salad again raw and when you’re in a developing country, you should go cooked rather than right anyway. So you know it was a big piece of pizza and or you know, personal pizza. And so we give this was before wearing a Dexcom so we have no arrows indicating the dress. In which his blood sugar is going, we just have a blood sugar of somewhere around 250 probably. So we have to give a nice correction dose, I have to give the combo bolus that we were doing for the pizza to accommodate for the, for the fat. So it’s gonna be dripping in for a while. And I didn’t factor in the walk that he had just had. So right after lunch, he and his brother asked to go into the sea and play. I’m like, Sure, that’s fine. So they did about five minutes later, he came back and he said, I feel shaky. So I tested him and he was in the mid 60s. And we ordered him a coke. And he started to drink. And still his blood sugar wasn’t going up. Eventually, he drank the whole big bottle of Coke, and still really wasn’t going up. And I was getting a little suspicious. And then he said, I don’t feel well. I feel nauseous. And then I knew we were in trouble. And your mind just immediately goes to like, the cheese was tainted. The basil on it hadn’t been washed and was in was unclean. Something, you know. Yeah. And I knew that he had like, over 10 units of insulin on board. And then the next thing I know he he starts vomiting. And I mean, pardon me, but projectile vomiting. And this is one of those moments when you just snap into too high alert gear. And it’s to my son, and my, my oldest son and my husband go back to the hotel, get the glucagon because of course the glucagon was with us. But it wasn’t with us.

 

Unknown Speaker  21:39

Right? It was

 

Bonnie O’Neil  21:40

in the hotel, helping the pillows in case they had a low but now it was it was tucked away with all the other supplies. And so the two of them ran back along this shoreline. And I knew it would have to be at least 30 minutes before they would get back. Right? Because there and back. And actually my son got back before my husband did because the roads were so rutted and so circuitous, that it just took him forever, it seemed to get back in the car. So all the while I don’t speak Spanish, I speak fluent French, I don’t speak a lick of Spanish. And all of these people were trying to help me and they didn’t speak any English. And they all they could do is bring towels and bags for my son. And you know, I knew that if he drank any more, he was just going to vomit it. So there was no point in trying to give him more to drink. And so we just waited. And I have never seen a sunset so fast in my life. Oh, I don’t know if it was where we were located on the Costa Rica coast. I know we were having a late lunch. But anyway, it just started to get dim. And by the time my eldest son got back with the the glucagon and cuts all over his bare feet, it was just all I could do to stop my hands from shaking, and mix that glucagon and get it in hand. So point number one was, when you go on vacation, make sure that glucagon doesn’t stay in your hotel, keep it on your person, you just never know. Point number two with practice that injecting or at least mixing up glucagon. Every year, when your glucagon expires before you throw it away. Don’t neglect that gift of having the opportunity to practice drawing it up because I was going to ask you,

 

Unknown Speaker  23:27

did you ever do that?

 

Bonnie O’Neil  23:28

I did it every year, I never threw one away without mixing it up. Because I knew that if I ever needed it, I wasn’t going to be able to stop and read the directions. I just needed to know what to do. Because the only reason you would use it is if you’re in an emergency. And in an emergency. We don’t think so clearly, or our hands are shaking, you might be thinking but your hands are shaking so much that you just need to go from muscle memory. So eventually my husband got their like gate. So I drew it up. I gave him the glucagon. My husband got there. And we’re in the car. And I was just surprised Stacey, his blood sugar didn’t come right back up. I expected it would come up to like, I don’t know, a perfect 110 would have been nice. You can even give me a question 150 I’d be happy with and if it didn’t, it was I don’t even know if it hit at oh well. And so I remember being in the dark in the backseat of that car just like trying to get every little whiff of the glucagon out and into him.

And, and then I just realized I don’t have another glucagon. I brought one. I didn’t bring two and he’s not in a stable enough place. Like I we need a doctor. So thankfully, this was probably the nicest hotel we had ever stayed at. And and I’m really thankful because they had a doctor on call. So we as soon as we got back to the hotel, we asked the concierge to call for a doctor and he was there. Oh probably within 45 minutes, something like that. What did he do for you? Did he give him more like IV glucose? Yeah, so he unfortunately was this big, you know, had a big headboard, big posters on it, and like a poster board sort of thing. And he just hooked an IV up to him and tied it up to the to the bedpost. And so the following morning, when he came back, Austin had a fever by that point. And he said, You know, I can’t rule out that this isn’t appendicitis, you have to get an emergency surgery in Costa Rica, this was not what I had in mind. And long story shorter, what ended up happening was he said, You’ve got to get him down to the Capitol to San Jose, four hours back down the way we had come up, you know, just two days before. So we have to do that, you know, it could have been the fever could have been from the food poisoning, which it was, but he said, you know, we have to be safe, it couldn’t be appendicitis or something else. And so that was the longest four hour ride I’ve ever had in my life.

 

Stacey Simms  26:02

Yeah, it was not appendicitis, it turns out to just be

 

Bonnie O’Neil  26:07

a lot it was it was just the food poisoning. And he spent three days in hospital. And there again, you, as a diabetes parent know more about diabetes than emergency room physicians do. And it’s important that you know that and that you believe in yourself about that. My son, his freshman year in college had to go to the ER for the stomach bug. And there to the emergency room, physicians relied on me for what I knew about how to take care of his diabetes. And so when we were in Costa Rica, the attending physician gave me her cell phone number, and said, I want you to be in touch with me. If this doesn’t come around, if his numbers don’t go in the way we want them to, we’re going to take the pump off. And we’re going to do it our way. But I will give you it was basically I’ll give you six more hours, I think this was like on day two or something. Because she was letting me manage his diabetes. Right? And but then she said, You know, we’re gonna do it six more hours this way. And let me know how things go. And it did it worked out fine. So here’s two more points coming to my mind when you’re traveling. Don’t just take one glucagon, you might need to use a second one when we were leaving the hospital. Among the other prescriptions that the doctor wrote for me. I said, Could you write me a prescription for glucagon because I use the only one I had. And clearly, my son didn’t get a stomach bug. It was food poisoning. So food poisoning could happen again. And I want protection from that. And she looked at me with these beautiful, innocent eyes and said, Bonnie, we haven’t had glucagon in this country in over 10 years. Wow. And so just don’t imagine that it’s going to be available for you. So travel with to glucagon when you travel. The other thing was, when we were in the hospital, the only ketone tests they were doing were blood ketone tests, they weren’t doing any urine ketone test. So I had to wait until they would come back. You know, they weren’t doing blood tests as frequently as we would expect to be doing our ketone tests. So again, don’t just travel with a bottle that has maybe 10 ketone strips in it. I had a nearly new bottle of 50 ketone strips, and I was worried that I was going to run out

 

Stacey Simms  28:29

going forward. I assume you’re filming like to travel? I mean, this was obviously a big trip and a big treat. Did you hesitate about traveling again?

 

Bonnie O’Neil  28:37

I don’t think I’ll go to Costa Rica. I’m nothing against Costa Rica. It’s just the memories are. They’re profound. I do try to pay attention to where there is a hospital, which is an easy enough thing to figure out. We have continued to travel that is for sure. In my book, I talk about another episode that happened after that, where he his insulin pump broke, and we were in France, and he had to get a we had to locate him a pump in a foreign country. So that’s another fun story. But no, we’ve continued to travel, but I think it’s just being safe, bringing your supplies with you and an abundance of supplies, checking to know where the hospital is. And I think it’s it’s just about being comfortable. Making sure that you feel comfortable where you are. Well, you

 

Stacey Simms  29:32

mentioned your book. Let’s talk about that. Sure. Yeah. Oh, congratulations. That’s Thank you.

 

Unknown Speaker  29:39

Thank you very excited.

 

Stacey Simms  29:40

Yeah. So why’d you call it Chronic Hope? Tell me about where that title comes from?

 

Bonnie O’Neil  29:44

Okay. Well, you might want to edit this out. I’m not sure so I was I was thinking about how much you know, I loved my my son and the care I give for him. This As a chronic condition and the title chronic love came to my mind. And that actually had been my working title for a little while. And as I was working on my book proposal, I did a little research little Google search on chronic love, and it was a porn site. So I changed the title. And actually, once I came up with the subtitle, chronic hope, is exactly what I’m writing about. We all love our kids, we do in a way that we show our love to them, especially as full time caregivers, that just cannot be disputed. But there’s some times when we as the parents just lose our way on the hope journey. Because it’s, it’s so long and so complicated and can be so unforgiving. And we can be unforgiving of ourselves. The message really is hope for us.

 

Stacey Simms  30:57

I may have to lead with the chronic love, I think that forget about editing that out. That’s pretty funny. Oh, my goodness. But you’ve had this story and you for a long time. I’m curious what caused you to kind of write it now to release it now?

 

Bonnie O’Neil  31:14

Yeah, good question. Well, I love to write. That’s the first starting point. I’ve been writing for a number of years and have been honing that craft. And as I was thinking about what the next topic was, that I wanted to write about, it just felt like it needed to be a story that I’ve been living, something that was really true. And that it wasn’t just something I’m going through now, which so many of my blog posts words like, you know, it’s that short, quick blog post is almost like an instant word. It’s like what you’re going through at that moment, and you write, but I felt like I needed to write something where I had come out the other side, and actually had some wisdom to share. And once I sort of landed at that place, it was well, this is what I know better than anything else. And living this story out first with my nuclear family. And then with my family with my children, I just have been steeped in that for so long. I speak for the jdrf education conferences, that type of nation summit, and that one of the earliest ones that I did, I was speaking on the psychosocial impact of T one D on the family. And it was the first time I had delivered the that talk and I was I was sharing about, you know, my nuclear family and then Austin’s diagnosis and how that impacted me. And I was just really honest, and, and raw, and I talked about my anger, you know, the disease coming back into my family, and just the challenges with my husband, when the two of us were not on the same page and the fear, I carried my need for control, wanting to control the disease, and all of these things. And as I’m looking up at the group that I was speaking to, like, everybody’s dabbing their eyes, and sometimes, like really crying and at the end, one man said to me, So when’s your book coming out? And I chuckled and kind of tucked that away. And it later, I think informed me very well as to what I should write about next.

 

Stacey Simms  33:32

What is your I mean, you have more than one son, and I’m sure they are your children are all featured in the book in their own way. curious what Austin? Right Austin? Is your son with time? Yes. I’m curious what what Austin thinks of this?

 

Bonnie O’Neil  33:44

Well, Austin is a man of few words that he’s not

 

Unknown Speaker  33:47

going to do. Much.

 

Bonnie O’Neil  33:51

I made sure that in the advanced copies that I have, that he was, he received the first one. And he very graciously accepted it and then said, Thank you. He has congratulated me a few times and said he was excited. I did ask him before I really started the writing, and was just sort of outlining things. I asked how he felt about it. And he said he was fine. And I did say to him, and it’s the Absolute Truth. If there’s anyone who looks ugly in the book, it’s me. It’s never hand because I am raw with how I processed my emotions. Because one of the things I feel like in that for us, parents have a child that lives with such a complicated disorder. 24 seven, we take so little time to attend to how we feel, you know, because it’s how can I complain when my child has to go through so much. And so we don’t really ever name what it is that we’re feeling and give ourselves permission to feel what we’re feeling. And so then we can’t really attend to it and move along from some of those stuck places and I really feel that the You know, the emotional health of a family begins with that center of the mom and the dad. And we need to get our stuff together so that we can create a healthy family emotionally.

 

Stacey Simms  35:14

I agree it’s so interesting because we, as you know, an initial diagnosis. And though those first few years, we as moms, I think so define ourselves by diabetes, it almost seems like we have it like and you come to a realization that Yeah, do not be do not have diabetes, we do not have our child’s experience. But it doesn’t make the experience of being a mom of a kid with a chronic condition, any less valid. It’s just a different experience. And I think I’m hoping, kind of saying the same thing you are in that once you realize that it’s a mom, that it’s okay to take care of what you are going through, knowing that’s different from what your kid is going through, you kind of name it and take care of it and acknowledge it and talk about how tough it is. And right now until you can do that. It’s so difficult. Yeah,

 

Bonnie O’Neil  35:58

it’s a kid. It is. And I’m so glad now that there’s such increased talk about soul care, because that at least is putting it into the forefront of everyone’s minds now. But I think parents of a child with a chronic illness just really need that permission to say, I too need this soul care. I am going through mourning. This wasn’t what I was expecting. I was expecting my child to have the freest life imaginable. And they still do. But especially in those early years, it’s a lot, we have to mourn the loss of this perfect health we had envisioned for our child, and we have to deal with the fact that Yeah, we are tired,

 

Unknown Speaker  36:42

a lot.

 

Bonnie O’Neil  36:43

And it’s okay to say I’m really tired. And I think even under, like coming to terms with the fact that a lot of our friends just aren’t going to get it. And there’s a loneliness that we carry here as the caregivers of our children. And it’s okay, and it’s not it’s once we begin to name it and look at it and explore it a little bit, and how it’s affecting us. That’s the beginning of healing and freedom.

 

Stacey Simms  37:09

And I meant to ask you earlier, and it’s okay, if you don’t want to talk about this at all, how is your sister doing?

 

Bonnie O’Neil  37:15

She has struggled in the last few years with some complications. She has had, I believe gastroparesis for, I think it’s close to 10 years that I think, went largely undiagnosed, and then has been quite problematic in the last few years. She’s begun going actually to my son’s retinal specialist for some treatments for her eyes. And her second or third treatment, this most recent one, they found that the retinopathy had had gone away. So I’m very thankful for that. So she just maintains the most positive attitude through shouldering this disease through the longest time, but I can see that it you know, it has taken its toll.

 

Stacey Simms  38:06

And so in your family, you know, you have two people diagnosed at different times, but still almost, it’s hard to describe how different it is. We talked about Lantus And then off air, you and I were talking about control IQ,

 

Unknown Speaker  38:19

right? No,

 

Stacey Simms  38:20

just a guess of reflection before we go of the technology and the advances of not only I assume your sister has is using different tools than she did when she was first diagnosed.

 

Bonnie O’Neil  38:30

She is for sure. And I think that has been a great asset to her. So yeah, she’s using now the Omni pod and the Dexcom as well. I am so grateful for the time in which we live and for the medical advancements that Austin has been able to take advantage of. I know one of the my friends through jdrf. She said recently, I am so thankful for all of you parents who came before our family did who paved the way because my daughter her daughter was diagnosed at age two or three. I’ve never known what you have known. She’s had the Dexcom as long almost as long as she’s had diabetes. I don’t know the sleepless nights that you know, I’m confident now like that each generation or micro generation is going to be able to say that to the ones who came before them that we’re going to continue to advance and are the lives of our loved ones are going to continue to get better. And that also just gives me a lot of hope.

 

Stacey Simms  39:36

That’s great. Well, thank you so much for joining me, Bonnie. I really appreciate your time. Best of luck with the book. I’m really excited for you. There’s nothing like a book launch. And I hope we could talk again soon.

 

Bonnie O’Neil  39:47

Thank you so much. This has been such a joy to be with you. Thanks,

 

Unknown Speaker  39:50

JC

 

Announcer  39:56

you’re listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  40:01

Learn more about Bonnie and her book and her story at Diabetes connections.com. In the episode homepage, as always, I put lots of links and info there, you could read an episode transcript, if you prefer to. Some people just like to read rather than listen to that it’s fine by me as long as you get the info. In conjunction with this episode, I have a contest on social media. This is on the Facebook page for Diabetes Connections, not in the group this week. This is just on the page. And you can win a copy of her book chronic hope.

I also want to point out and I know we had a commercial in there, but I think it’s really important especially for newer families to know that there are now options when it comes to using emergency glucagon because since the 60s, we’ve had the red box or the orange box, which were basically the same thing as you heard Bonnie talked about there mixing it up, and the big needle and all that stuff. There are new options. gfo hypopyon, is one that I spoke about, they are a sponsor of the show, they are a you know premixed ready to go shelf stable glucagon. And it’s very easy. It’s all in the panel ready, nothing to mix and you don’t see that huge needle, it’s very different. It looks more like an epi pen or an insulin pen and simple to use. There’s also baxi me, which is a nasal spray. And that is also very easy to use, I will link up more information about that.

I just think it is enormously important to know that these things exist, knock on wood, knock on my head, knock on anything I can find. We haven’t ever had to use emergency gun with Benny in 14 years. But as Bonnie illustrated, you just never know. So it’s so important to be prepared. I’m also really interested in the future of this stuff. Because I keep hearing more and more people say that we’re gonna be using it not just for Super lows, right? I mean, like me, you were probably told if He’s unconscious, you know, if you can’t keep anything down, that’s when you use it. But now there’s a new school of thought about using these in much smaller doses for less severe lows. So I don’t have a lot of information on that. So I’m not gonna talk too much more about that. But I think that is very interesting. And something to watch. And certainly glucagon in an insulin pump is something that, you know, companies are working on, most notably the iLet from beta bionics. So, as we say all the time, stay tuned.

Tell me something good, a big honor for a wonderful member of our community. And that’s about Minecraft to just ahead. But first Diabetes Connections is brought to you by Dexcom. And you know, when Benny was very little, and in the bathtub or in the pool, anytime his hands would get wet. I always noticed his fingertips. You know exactly what I mean. Right? We poked him so much. They were just full of these little pinprick holes. It looks horrible. I mean, you can really see it when he got wet at age 16. I am not inspecting his hands. I rarely see his hands anymore, but his endocrinologist does. And we went for a checkup in early January, his fingertips are normal. It’s incredible. We’ve been using Dexcom for seven years now. And with every iteration, we’ve done fewer and fewer finger sticks G6 eliminates finger sticks for calibration and diabetes treatment decisions that we used to do 10 finger sticks in the past. It makes me so glad that Dexcom has helped us come so far. It is an incredible tool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions or more, go to Diabetes, Connections comm and click on the Dexcom logo.

 

Over the almost six years of this show, I have been so fortunate to have some guests that really made an impact on me, who I’m really lucky, I think to call friends now, but who I turned to again and again for information. I know I can rely on them. They’ll give it to me straight and in a caring way. And one of those people is Dr. Stephen ponder. Many people know him because of his sugar surfing talks and books, but he’s a practicing endocrinologist. He’s right there in the thick of things in Texas when he can pray and hopefully post COVID runs a fabulous diabetes camp and has lived with type one himself for more than 50 years. He got a really great honor recently, and he says he was stunned to learn that he has been selected for a big honor at the University of Texas Medical branch in Galveston. This is where he went to medical school. And then he stayed there another nine years where he says he became a husband, father, pediatrician and pediatric endocrinologist and the award is the Asheville Smith Distinguished Alumni Award. He will receive that formally in June during the graduation ceremonies at Galveston and the to read his post about this was it was really inspiring he gave a lot of credit to others and he finished by saying never in my wildest dreams did I imagine an honor such as this so congratulations to Dr. Steven ponder for a great award well deserved that’s just fantastic.

Another Tell me something good comes from Samantha Merwin who is the mom of Logan the elbow bump kid we’ve talked to them on the show before she is working to roll out a national program about Minecraft. This is a Minecraft t Wendy play project. She says she had a successful pilot and She’s working to roll it out nationally, working out a lot of logistics apparently to roll it out for people outside of her home state. So more to come on that. And she’s also been working on a project with the college diabetes network along with Cigna. This is a really cool program all about mentorship applications are going to open in February, I will link up the page that is already there for college diabetes network. Basically, it’s a program for junior and senior undergraduate students, you got to be current junior or senior, and it pairs you with a Cigna employee who has a similar career interest. So if you want to learn more again, I’ll put a link in the show notes. But this was really great. Samantha love the work that you’re doing here definitely going to help a lot of people and keep us posted on both of these programs. My son used to love Minecraft he still plays it but man when he was like 12 or 13 that was all they played. It was pretty wild stuff. I don’t know what he’s moved on to now. Although that’s a lie. He his friends are playing Uno. They were screaming and carrying on get the card game Uno. I asked him I was like why are you so loud? Kind of Be quiet. I figured there’s like shooting people or doing something crazy. They’re playing card games on the computer? I don’t know, is there any sign that you’re getting older than you don’t understand the games your kids are playing. If you have a Tell me something good story, please send it Stacey at Diabetes connections.com or posted in the Facebook group.

 

Little bit of housekeeping before I let you go, starting next week, I’m going to be doing something different. I’m going to be releasing an additional episode every week. So we’ll have the regular interview on Tuesday, the long episode with segments like Tell me something good and innovations and all sorts of stuff. The regular episodes on Tuesdays will continue that way. I’m adding an episode on Thursday. And these are going to be what I’m calling classic episodes. If you’re a sharp eared listener, you will know that I dropped in a couple of these last year kind of as a test. They are interviews from several years ago, as I mentioned, we’ve been doing the podcast for almost six years now. This is Episode 347. So there’s probably a couple that you have missed along the way. And what I’m going to do is put context to the interview, you know, kind of catch up with the person let you know what they’re doing now, and then replay the interview from several years ago, we have really great stories from a lot of really terrific people that you may have missed. And this way, if you’re newer, and you haven’t heard it, it’s super easy enough to scroll back. I mean, Apple podcasts only shows you 300 episodes Anyway, you don’t have to go anywhere. It’ll be delivered right to you. And you can catch up with some of the really cool people and stories that I spoke to back in 2015 and 2016. So that starts on Thursday, February 4. Right now I am scheduled to do it for about half the year. We’ll see how it goes. And you’ll have to let me know what you think. Because after all, the show is here for you. If you don’t like it, don’t wait half the year. Let me know right away. If you do like it, of course I would love to hear about that as well.

Next week, you’ll be hearing from Lily I talked to the folks from Ypsomed a couple of weeks ago. Ypsomed and Lily are partnering to bring a new insulin pump to the United States. It’s not a new insulin pump elsewhere in the world, but it could be here as early as 2022. We’re going to talk about why Lilly decided to pivot and go in this direction. That is next week. And thank you 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 next week. Until then, be kind to yourself.

 

Benny  48:29

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

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