#404 How would you help a newly diagnosed friend?

November 9, 2020Scott Benner

People living with type 1 diabetes share their thoughts about what helps a newly diagnosed person.

From the Juicebox Podcast private Facebook group

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Scott Benner 0:00
Hello everyone and welcome to Episode 404 of the Juicebox Podcast. Today's show is sponsored by everybody but has no ads.

Scott Benner 0:11
Dexcom makers of the dexcom g six continuous glucose monitor and the Omni pod tubeless insulin pump. We're also going to thank g Volk hypo pen touched by type one, the T one D exchange, and the Contour Next One blood glucose meter. You can find out more about the dexcom G six@dexcom.com Ford slash Juicebox Podcast forget it's covered completely now for veterans. So if you're in the VA, definitely check out the link. You can also get a free no obligation demo of the Omni pod tubeless insulin pump at my Omni pod.com Ford slash juice box check out Arden's blood glucose meter at Contour Next one.com forward slash juice box g Volk glucagon.com forward slash juice boxes where you'll learn more about g voke hypo pen. And don't forget to touch by type one dancing for diabetes event is coming up very soon touched by type one.org. And you can add your name to the T one D registry very simply, very quickly at T one d exchange.org. forward slash juicebox. There are links in the show notes and links at Juicebox podcast.com.

I logged on to the Facebook page recently for the podcast the private one that you can find by searching for Juicebox Podcast type one diabetes, when I saw Jenna's post, and it really caught my eye. Please remember while you're listening to Jenna's post, and the hundred and 84 comments that were left behind it, don't worry, I don't think I'm going to read every one of them. Please remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making changes to your health care plan for becoming bold with insulin. Jenna's post is really lovely. And I'd like to read it to you now. Hello all. I am not the parent of a type one diabetic. But my very best friend's son was just diagnosed over the weekend. They should be coming home from the hospital tomorrow. And I want to help her navigate this transition home.

Right now she is scared, very overwhelmed, and has information overload. Please give me any advice you could that helped you in the beginning. I want to put together a giant care package with tips, tools, items, or information you wished you had or that helped you. Any input you can share with us will be greatly appreciated. Thanks in advance. D share shared that her biggest concern coming home with her five year old were snacks and she was looking for free snacks you know quote unquote free snacks as she's trying to figure out this insulin thing. So she said string cheese simple, simply smart popcorn, jerky, sugar free jello and olives were some examples of things that helped her transition in the beginning. Joni wanted to share that things will get easier. You should get a Dexcom and join a support group. Jennifer says while you're a great friend, perfect portions makes us scale to weigh foods and it tells you how many carbs that has counting carbs accurately is very important. While you're getting dosages adjusted. She also suggests getting a really cool backpack to carry the supplies around then. And that in the beginning having little bags of snacks pre counted with their carbs makes things easier. Nita popped in to say that she loves the scale she has greater goods, nourish digital kitchen food scale, please know that I have never used any of these products. I'm just reading the while this thread goes on forever. Someone else is amazed that a scale can count carbs. Kelly brings in another scale. This one is the nutria track. Apparently there are a number of these scales. You put something on tell it Hey, this is an apple or whatever. And it tells you the carbs. I wonder how well that works. Oh, well this scale thing freaks out a number of people. And then Julia says this is a wonderful community to start with. Oh, thank you Julia. The podcast that they This group is based on is a wonderful resource. Julia, you're very nice. Episode 11 is a great starting point. And then Julia brings something up that I would have suggested defining diabetes, the series within this podcast that just defines terms is very helpful in the beginning, while people are throwing new words at you, and you don't know any of them. aleena says, be patient with yourself, your child and this empire and this entire process because it will get easier. The first few weeks or months are wacky, and she warns to look out for a honeymoon period. For those of you listening, don't know, a honeymoon period is a time where the body still may make some insulin. And that can get confusing when you're measuring insulin using it, then you get some that's man made and some that's still made in the pancreas, it can make things a little wonky. So look out for the honeymoon period. If you get one, which not everyone does. Nina says that a lot of her friends were actually at home when she got there to support her, they brought, you know more quote unquote free snacks. And they did some stuff around the house that helped. So that the family could settle in. That's really lovely. I have to say that that was done for me to reminding you that I am a stay at home dad. When we returned from our vacation where Arden was diagnosed, a number of family members came and just cleaned our house top the bottom just you know, like put us in a reset in the house. And it was really helpful not to have to worry about stuff like that. In those first couple of weeks. It's a great idea. Becky says to know you're not alone is huge. And if Jenna could do her best to try to understand type one diabetes, that would be amazing. She also says that she wished she found this podcast years ago, and that has changed her life. Oh, Becky, that's really lovely. I'm very happy.

Oh, she also says get an Dexcom I agree with everybody else who said good at Dexcom. Laura says How about a nice cozy blanket. And something for the mom, like a bottle of wine or tea, something that may help comfort her. And educating yourself helps a lot to Laura said that she found the best support came from those that listen without judgment that there'll be good days and bad days. A willing ear is always very appreciated. Kimberly believes that her friend is going to need encouragement, a shoulder to cry on. And she brings up free snacks too. So obviously that's gonna keep coming up. And I want to say that when someone says a free snack, they're talking about food that doesn't need to be covered with insulin. And while there are some things that just have absolutely no carbohydrates in them that don't impact your blood sugar. I'd like to mention here that there are some things that have no carbs in them that people will tell you are free, that could have an impact on your blood sugar down the line. That's a higher level understanding. But we do have an episode about it. It's called diabetes, pro tip fat and protein. That said, in a nutshell, you could eat protein, like, like beef, for example, though, as it gets broken down in your system gets stored as glucose and can raise your blood sugar. Now it doesn't raise it nearly the same as if you you know, had a juice or an orange or an apple. But there is still impact calling it free is a bit of a misnomer, but I understand the inference and the Denise Megan brings up low supplies. So if you're listening and you're newly diagnosed, there are likely going to be times where you use too much insulin or balance it sort of incorrectly with the food impact and your blood sugar may start to get low. In that situation. You're going to need something to bring it up pretty quickly. Sometimes, fruit snacks hit the blood sugar very hard. As do juice boxes. My daughter uses Adam and Eve, the little Burton Ernie ones even though she's 16. Those work great and why Why? Why is my daughter carrying around a burden or any juice box when she's 16 years old, because it has a very little bit of juice in it so you get a little bang for your buck. There's only a tiny bit of juice think it's like four ounces, but it hits my daughter harder. So think about that. You don't want to have to drink 16 ounces of Gatorade 32 ounces of Gatorade to bring your blood sugar up 30 points you want. You want a hard hit. You know what I mean? Like bang, ooh, that worked. I moved 20 points. Just want to get something that you can regulate. A huge mistake I see people make is once they open the bag they eat a law. It's possible you might need to fruit snacks or three fruit snacks to fix your blood sugar. You don't have to eat all of them just because you open the package because eating all of them could bring A low blood sugar and continue to make it a higher blood sugar. Then you get on the roller coaster. And that's not fun. That's you don't want to be shooting up and then shooting down especially in the beginning when you don't understand really how the insulin works. So low blood, low blood sugar supplies, great idea. try really hard not to overdo it. Once you get on that roller coaster, it is hard to get off. David's advice, listen to the Juicebox Podcast and get a continuous glucose monitor, find some good meals and snacks that are lower carb and have the carb count ready. At the beginning, every meal was difficult for David because he couldn't think of any ideas for meals. Now he uses ingredients like vegetables, cheese, eggs, tofu, he said he's a vegetarian. But he knows that meat is also a low impact food. And don't forget about spices that can add flavor to meals. Even having one meal a day kind of prepared and understood as far as its carbon impact goes, can alleviate some of the mental weight of the diagnosis. He also says please listen to your friend because they're scared and overwhelmed. And listening really does help. David also suggest the diabetes pro tip series from this podcast. But he also says to listen at your own pace so that you don't become overloaded. Daniela offered to learn how to give shots and finger sticks.

Knowing a friend can help is a relief. That's simple and good advice. There's a follow up here to that one that was going to be my advice, learning ratios and all you can about specific care to help her out if she needs a break. This would have been so helpful when my son was diagnosed. And even now, eight years later, this would be the best gift in support you could give. Robin says that she's a nurse, and so is Jenna. And she says from one health care professional to another, please know that what we learned in our training about Type One Diabetes could never prepare you to be the parent of a child with type one. That there is a level of complexity in precise science, constant dynamics of change meal prep body's response to meals, response to school sickness, fear sports, these things all have an impact that you couldn't be ready for. Holly says to try to think about numbers you know blood sugar numbers as information and not a measure of personal value. She said she struggled with this personally for a while. In her 45 years as a person living with Type One Diabetes. She was able to help her daughter only think of the number as a piece of information on which to base a decision. I think that is actually great advice. Catherine says listen to the podcast. Thank you, Catherine. Lots of stories of people going through the same thing, plus tips and lots of good real world information, which I discovered it when I was first diagnosed. She also very much likes the book bright spots and land mines by a former guest on the show Adam Brown. Adams writing she says are clearly written and very helpful. Jennifer says here's a big one. And it's difficult to do never judge or react strongly to a blood glucose reading. You're gonna see highs and lows. But there are no bad numbers. Just simply your guide to adjusting ratios. Try to keep strong emotions out of your diabetes decisions. Always being a frustrated, sad angry can obviously lead to bigger issues. Jennifer, I know how you found this podcast. I like the way you think. Rebecca says she wished she knew that some of the older slow acting insulins were more impactful when they were split and used every 12 hours instead of once a day. Gina says she just got a meal that somebody made for and how wonderful it was to receive something that, you know, she didn't have to cook herself. Jodi brings up something here that I'd like to say, which is that putting a time restraint on when you're going to feel better is sort of silly, I did this I've shared it on the podcast before it was a bad idea. I got it into my head that you know, in a year I would really understand diabetes. So don't think oh, it's been a month or it's been a week or it's been a year. I should know all this by now. It takes a lot of time to have the experiences that build the knowledge base that you end up using day to day. They don't just come all at once. And often you'll have the experience and not recognize it as a valuable experience. So you don't save it. Or I also think you can be so freaked out in the beginning that you gret you get this great lesson and it just doesn't register at the time. having patience and not putting timelines on things, I think is a great suggestion. There's a follow up that idea here from Michelle. She said that there was a ton of grieving, discomfort. Don't forget this thing as traumatic. It's a loss of normalcy. There's going to be tears and frustration and anger but she was amazing. That how quickly things like that translated away, as she found things like Dexcom, or learned that there were some foods that didn't, you know, impact blood sugars. And in finding this podcast, she said, Actually, it looks like she found the podcast while she was still in the hospital with her daughter and it helped her a lot. Well, I'm glad Michelle, that's excellent. Michelle says less than 60 days later, she's transitioned to a dexcom g six. She's talked about her diabetes with their teacher and her classmates. And everything is, you know, getting normal, she's even back to playing volleyball, golf, tennis, I think that's a good, that's a really great message too, for anyone that this is not a permanent loss of normalcy. It's a temporary pausing while you figure out how to do things with diabetes. And then soon, you'll realize it's not that big of a deal to go out and play baseball and have type one diabetes, a lot of people do it. You can tell favia says that, of course everyone is different. But for her as the mother of a child with Type One Diabetes, she was mentally physically and emotionally drained after the diagnosis in hospital, say, a friend sent her flowers, and then just let her vent, and that it was a huge help.

Carrie says a 504 plan is a really big help. And for those of you who don't know what that is, it's a care plan that your school has to legally adhere to make. So a lot of things go smoother. Jamie says that her four year old was diagnosed at two and she wishes somebody would have just told her it's going to be okay, at some point, just reassurance that it's going to be okay. Lisa has not to make a lot of plans because there's going to be a lot to do right now. That's insightful and simple. Lee, you're learning Type One Diabetes right now. And it's kind of hard to do that while you're painting the garage. This has been said a couple of different ways but not so specifically, Holly says being able to offer to babysit is a big deal. Just childcare in general. So somebody could take a nap or a bath or just get away for a minute is a really big help. Jeanette says it's not a jail sentence. It's a lifestyle change. That viewpoint really helped. Sarah said it was important for her to have somebody there to support her but not to pretend that they understood what they were going through. This is a deep idea. And emotionally important. I don't think that it's a good idea to say oh my gosh, my aunt has diabetes. I know all about this. That's not great. Empathy, real empathy, not. I know how you feel, or I can't imagine Of course you can't imagine it's great that you can't imagine your kid doesn't have diabetes, right? You You don't have it. But coming in with with honest support, I think is what Sarah's saying, not you know, don't pretend. Bernadette says that her son was diagnosed at 13. And one of the best things that she did was to get him involved in his own care from the beginning. Finger sticks, giving himself an injection. He saw that he could do it believed he could handle it and gained a lot of confidence. And then soon he was telling her to relax that he's got it. It's excellent. A couple people have mentioned the genteel Lance. I guess it's like a suction Lance that people say it doesn't hurt as much I don't know my daughter says her Lance doesn't hurt she has the well how about that my daughter's had diabetes for so long. I can't think of the multi clicks or something clicks. See Li x we love It's terrific. But I guess everybody will find one that they like, ooh, fast clicks. It's called fast clicks.

Unknown Speaker 18:53
Got it.

Scott Benner 18:53
It's cool because it has a drum and you don't have to change it all the time. You'll see if you if you check it out. Lena says that the person asking the question Jenna could listen to the podcast to to absorb some ideas. She's found that meal planning apps can be helpful. And a grocery shopping buddy who helps you read labels. It's nice idea. One person here just says you're just such a lovely friend. And they remember being so lonely and sad. When they came home from the hospital Julia Julia is a frequent guest on the show said you're an amazing friend. I recommend not forgetting to help your friend. From the emotional standpoint she's likely drained and may think she can do it anything you can do to help take that burden off like errands or chores to help her relax would be very helpful. Julia. Cassie reminds us all that sleep is important. So anything you can do to help somebody take a nap I agree napping very important. Natalie said her child was just diagnosed and this post made her cry. Because of what a good friend, Jenna is, Taylor says, This is interesting. We just came home last week, I cried a lot, a lot. make her laugh, she'll cry too. But it'll be good. Don't try to point out the good parts of anything. But if you do point out something good, just reminder that everything is still the same, she can still play sports and eat food. She's still gonna have her first sleep over, go to college. And I'd like to add something here. I didn't find it helpful when people said, Oh, your kid got this because you can handle it. The inference that I am a together person and able to shoulder a burden of a medical diagnosis is not comforting. I think that's a little bit about what Taylor was saying there Don't point out the good parts to me. Don't say stuff like, Oh, well, at least you have health insurance, and stuff like that, because none of that is helpful. Vanessa points out that no one described the differences in carbs to her. And this is something we talk about on the podcast a lot. The glycemic load and glycemic index of different foods, which at its core, and at its very basic nature means that 10 carbs of grapes will impact your blood sugar differently than 10 carbs of a baked potato. And knowing that would be really helpful, especially when the impact dictates how much insulin it needs. So 10 carbs of one thing is not necessarily going to be the same as 10 carbs of another. Jill, I appreciate you bringing that up. Jay brings up something I think happens to a lot of people I wish she says that I knew my daughter could eat whenever she wanted. As long as I gave her insulin, the first day home, I thought she could only eat at certain times. And she sees a lot of moms with that same confusion. I agree. Sometimes when the hospital and the doctor are giving you rules, the rules seem very concrete. And it turns out, they're a lot more flexible than you think. I would say that common sense is a big, big and valuable tool in living with type one diabetes, and not getting brainwashed by something someone said to you one time is really important. Theresa brings up what I think is another great point to remind her that her child is the same person that nothing has changed about who the child is. I struggled in the beginning with not looking at my daughter and seeing diabetes before I saw her very important not to do that. Look at Alexandra jumps in and says give her my information. I'd be happy to talk to her if she needs help. That's really nice. Jennifer brings up my point don't say God knew that she could handle this if she gave her kid diabetes. Yeah, that's a obvious thing you would think but a lot of people say it. Margarita brings up something that I'm going to have a podcast episode about soon as I can. She said that she went through the stages of grieving while her son was diagnosed, and that it's fine. But you have to give yourself some time. Don't forget to take care of yourself as the parent. Very, very, very important. Another vote for a babysitter. Stephen says that once the initial shock of the diagnosis wears off, he found that the words education is the great equalizer are absolutely true. He's telling you to learn about how insulin works. Learn about how food impacts you learn about the quality of food, this one's coming from me. Processed foods are much more difficult to manage with insulin than more natural foods. It's just the truth. You can do it like I could Bolus a pop tart, but you're not going to figure that out on the first day. That's difficult. more votes are sending her friend wine. Cheese. You guys are a bunch of drunks.

Sima says you're an awesome friend for asking. Oh, Kelly, be the person that she doesn't have to be brave for. That's a that's an interesting way of thinking about a shoulder to cry on. You just be a place where your friend can be honest and doesn't have to pretend it's a great idea. Taryn says that someone that can help with the rest of the family, if there are other siblings is a big help. So those kids don't feel like they're just sort of being shelved while you're figuring out diabetes. Andy says this is good and he said that when she was coming home from the hospital, they were given like a packet of papers by everyone that she met with and that they need to be organized and going gone over and sorted out. And that even some of the things that are being said here aren't going to make any sense to her at the moment. She's going to need time to figure it all out. She also says that going to pick up her prescriptions for would be really helpful. Oh, Sarah, you are Oh girl after my own heart office. To do her laundry and bring her coffee, I don't drink coffee. But anyone who would do my laundry is a lifelong friend. Oh, Lois says Get her here on the on the this Facebook page will give her access to all kinds of great information. Thank you, Lois. I think it's a great Facebook page too. All right. Just listen, let her cry. Have her listen to the podcast that changed my life. I'm going through a little quickly now. Tina gave some lists of some carb counts that are, you know, you can kind of download off the internet so you don't have to guess. And Jenna comes in and says thank you This by the way, this thread is now four days old, as Jenna comes in to say thank you again. And Jen has been very responsive and, and Harding everybody stuff and everything. And then this guy comes in and says that the thread is going to become a podcast episode. If you'd like to join the Facebook group, there's links right here in the show notes of your podcast player, and at Juicebox podcast.com. But you can always search Juicebox Podcast, Type One Diabetes on Facebook, to join today. Hey, huge thanks to Jenna for making a post that got such great responses. And thank you to everyone who responded. I genuinely believe that this is the kindest place I've ever seen on Facebook, especially wrapped around type one diabetes. So many listeners, so many wonderful and thoughtful replies.

I'd like to also take a moment to thank the sponsors of the show. Because this is me, you know, going through a Facebook post and reading what I think are really helpful replies, it takes time. I know it'll take you a half an hour to listen to it. But it takes me hours and days to produce this episode and get it to you as it does with all of them. This podcast is absolutely free to the listeners because it is ad supported. So if you have the opportunity to check out one of the sponsors, please do if you're looking, you know for an insulin pump, check out the Omni pod. You don't have to buy it. But check it out, get the free no obligation pump santia. See what you think. If you're thinking about Dexcom, use my link to get there. And this same goes for all of the other advertisers. Every year around this time, they look back and see how many of you clicked on a link. And that's how they decide if they want to sponsor the show for another year. That's how a year from now you'll get another episode. It's how a week from now you'll get it one is actually going to be two more episodes this week. So that'll end up being somewhere around four hours worth of content just this week. It takes me I am the Booker of the show. I am the one who conducts the episodes. I edit, produce, do the technical parts of leveling the sound, getting you the episode, supporting it on social media. I think that each hour of content that you hear probably takes me six to seven hours to create. And I love it like don't get me wrong, this is the best job in the world. But it is ad supported. So click on the link, check out the sponsors. Tell someone else about the show. I mean, really, if if the show continues to grow, then we shouldn't have any trouble keeping the sponsors. You know what I mean? So if the podcast is really been valuable to you, and you meet somebody else who you think it could be valuable to also telling them is maybe the kindest thing you could do to keep the podcast going. So with all that in mind, thank you to the dexcom g six continuous glucose monitor. Find out more dexcom.com forward slash juice box and the Omni pod tubeless insulin pump my Omni pod.com forward slash juice boxes where you can get a free no obligation demo of the Omni pod sent directly to you. To learn more about the Contour Next One blood glucose meter go to Contour Next one.com forward slash juice box. See what's going on it touched by type one at touched by type one.org. Don't forget that their dance extravaganza is coming up in just a few days. Check out that link for more information. If you're a US resident, add your name to the T one D exchange registry. They're looking for data from you simple, easy type one diabetes related data to help grow care for everyone. It's completely anonymous and 100% HIPAA compliant. T one d exchange.org. Ford slash juice box. No kidding. I Had some computer issues a few weeks ago, those of you who clicked on key Wendy exchange.org, forward slash juice box and filled out the registry questions paid for online backup of my data and on site backup, so I was able to buy some hard drives and get a backup service for the shows that have already been created. I know some of you may know I had like a computer issue, as a bit of a scary didn't lose anything. But there were 63 unproduced, but recorded episodes of the podcast on a computer. And I now have redundancy set up that was paid for by those of you who clicked on T one d exchange.org. forward slash juice box in October. It's very cool. It's amazing. People like to learn more about g vo cuyp open G Volk glucagon.com forward slash juice box. last little bits. If you have a great doctor, or you're looking for one, check out juicebox docs.com. That's where listeners of this show are sharing their favorite practitioners. If you have one, send them in through the website. And if you need one, go check it out. We have them all over the United States and all over the world actually more come in every day. Are you looking for those diabetes pro tip episodes. You can find them right there in your podcast player beginning in Episode 210. Or they're all neatly displayed at diabetes pro tip.com. Those of you who are looking for help, because you're newly diagnosed, I hope you'll go back, check out the Facebook page talk with people.

I really think the diabetes pro tip episodes are invaluable as our defining diabetes episodes. And we have some great stuff coming up in 2021. Jenny's gonna take all of the notes that she gets from people. And you know what? That's too soon. Let's just tease that out a little longer. I'm not gonna tell you what Jenny and I are doing yet in 2021. But let's just say yeah, gonna love it. Alright, thanks so much for listening to the podcast. Two more episodes coming this week. The holidays are upon us. I know. It's been a long year for everybody. I hope you're doing okay. But through it all. You've supported the podcast in record numbers. As the show approaches, 3 million downloads. I feel incredibly lucky and grateful that you're here, that you're sharing that you're listening and that you're having the outcomes that you are. It's really heartwarming. And I just want to thank you as we go into the holiday season. I'll see you soon.