#1157 Return of Body Fire
Carol is a retuerning guest with a lot of auto immune issues. She uses some old and some new meds to help her through.
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Scott Benner 0:00
Hello friends and welcome to episode 1157 of the Juicebox Podcast.
Carol is a returning guest. She was originally here on episode 586. In an episode titled body fire, she's 44 years old, she has type one diabetes and a number of other issues that she medicate in certain ways. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. In today's episode, we're welcoming a new sponsor with a really interesting ad format. Instead of a classic ad, you're gonna get a mini interview just a little 92nd nugget from a slightly longer interview that I did with someone from the Medtronic champion community. At the very end of the episode, you can hear the entire recording that led to that 92nd chunk. If you have type one diabetes, or are the caregiver of someone with type one and a US resident, please go to T one D exchange.org/juicebox. And fill out the survey. When you complete that survey, which you can do in fewer than 10 minutes from your phone. Like while you're on the toilet, even you know I'm saying doesn't take that long. You're going to help type one diabetes research. You might help yourself, you're definitely gonna help somebody else. And you're going to be supporting the Juicebox Podcast T one D exchange.org/juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jalen, he was diagnosed with type one diabetes at 14. He's 29. Now he's going to tell you a little bit about his story. And then later at the end of this episode, you can hear my entire conversation with Jalen to hear more stories with Medtronic champions, go to Medtronic diabetes.com/juicebox or search the hashtag Medtronic champion on your favorite social media platform. This episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're high or low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out. You just said something to me that made me laugh and I was going to describe you why I was laughing and then I thought well, let's record first before I do that. I thought I'm having her back on the podcast like she was on once great episode. I'm gonna have her back on there must be a rock solid reason that I'm doing this. Then
Carol 2:59
reasons actually one was because you were curious about how I was navigating health care in Canada because since my last episode, I had no help. And honestly, three years into diagnosis, I still have no help. And then second was you were curious about my trade job. The fact that I smoke weed, and I manage my blood sugar, but I don't take pain meds and all I do is use marijuana.
Scott Benner 3:28
I remember Okay, okay, so let's give people just a like literally like a 45 second high level overview of you. We're on episode 586. It was called What's it called? Body fire?
Carol 3:40
Body fire. Yeah.
Scott Benner 3:42
Okay. Give them enough of your backstory that we can go forward. So
Carol 3:46
in June, June 3, actually 2022 I was diagnosed with type one ladder the hard way through emerge. And within 10 hours of being an emerge, I was told that due to my dad testing and my intellect testing, I was a type one diabetic. And due to COVID, I was kicked out of emerged with insulin to Use as directed. And no one ever gave me direction. I taught myself insulin with a YouTube video and an orange. And I found you on YouTube. When I was diagnosed, my agency was 18.3. My blood work three weeks ago made one CS 5.7. My time and range is 90%. I work in trade. So I do burn through sugars but still kind of learning how to deal with that. But in Canada, our health care system even though it's free, is absolutely shattered. So, yeah, I kind of navigate through it myself. I have 11 autoimmune diseases, and insulin and Synthroid is all I take. She's,
Scott Benner 4:48
I can't tell you I don't know what's been wrong with me this week, but you made me cry right away. I just think it's the idea of being so poorly helped at the beginning, and then just sort of released And then watching you, honestly,
Carol 5:02
I think, in a way, it was kind of a blessing in disguise because I feel that if I would have been pampered by an endo clinic, I would have learned a lot of wrong things. And then it would just cause me problems. Every person I know who follows everything the endo tells them, they're a onesies all over the place, time and range is never there. They don't understand curved ratio. Like it's such little education. It's almost scary. Yeah, so I'm kind of glad I was fed to the wolves because it kind of taught me how to manage without all the bullshit from the clinics, because let's be honest, as six weeks seminar doesn't teach you nothing. And not every diabetic is the same. So they'll compare me to someone who's not even like me, and then get mad that our results are the same by pump. I'm on a T slim, I've literally done every adjustment myself. I haven't seen it. I put a call into my endo last September, because I was getting lows at work like 2.6 2.7 lows. And I'm still waiting for a callback. So
Scott Benner 6:05
maybe if she dies, we won't have to call her back. Well, I think I
Carol 6:09
figured out on my own. But it's kind of sad at the fact that I never told them I figured it out on my own. I'm still waiting for a callback. And they never got back to you know, they told me it might be November, or possibly January of 2024. So
Scott Benner 6:21
hi, I'm calling because I'm having dangerous lows. Here are the numbers we might get back to you by November.
Carol 6:26
Oh, no. The I called last September September 2022, is when I called with these lows. Oh, and they told me they might get back to me this November. So
Scott Benner 6:35
if I call on September, it's a little over a year for them to get back to me.
Carol 6:40
Yeah, and the reason their excuse for it is because when they look at my bloodwork, my a one C was okay, so they felt I was just, I guess looking for attention, I don't know. But they never took the time to look at my
Scott Benner 6:52
graph, or how hard it would be to just put one person who understood graph reading and how to talk to somebody remotely about diabetes. Well, I
Carol 6:59
did. I had to pay a nurse. So in Canada, we have private health care and we have like your public funded health care which takes up 43% of my taxes. Yeah, that free health care that all the Americans seem to think is so great up here is when a waiting for a phone call back from the health care I paid $150 for my appointment. The lady called me back and four hours. Yeah, she
Scott Benner 7:20
wanted the $150 This episode is sponsored by Medtronic diabetes, Medtronic diabetes.com/juice box. And now we're going to hear from Medtronic champion. Jalen.
Speaker 1 7:32
I was going straight into high school. So it was a summer heading into high school was that particularly difficult, unimaginable, you know, I missed my entire summer. So I went, I was going to a brand new school, I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist. So I was traveling over an hour to the nearest endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown.
Scott Benner 8:06
Did you try to explain to people or did you find it easier just to stay private?
Speaker 1 8:11
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just kept it to myself didn't really talk about it.
Scott Benner 8:26
Did you eventually find people in real life that you could confide in. I
Speaker 1 8:30
never really got the experience until after getting to college. And then once I graduated college, it's all I see. You know, you can easily search Medtronic champions, you see people that pop up and you're like, wow, look at all this content. And I think that's something that motivates me started embracing more. You know, how I'm able to type one diabetes? To
Scott Benner 8:51
hear Jay Lin's entire conversation stay till the very end. Medtronic diabetes.com/juice box to hear more stories from the Medtronic champion community.
Carol 9:02
That's your $50 that's easy to
Scott Benner 9:05
understand now, by the way,
Carol 9:06
and the best part was is the lady I talked to you in Ontario, she knew who you were so it made life very easy. I didn't get yelled at for once for adjusting things and not waiting for healthcare. She says that's what I get yelled at for a lot is Well, why didn't you wait? Well, prime example I've been waiting a year if I would have waited, I'd be dead. Why am I saying be unemployed? You know what I mean? Like and then still be dead? Because I'd have no health care and I'd have no money. So Carol,
Scott Benner 9:29
first of all, I don't know why I'm so emotional today. You're like she knew you weren't. I was like, I'm helping people.
Carol 9:34
Like, honestly, God like I, I am your preacher up here like everyone who I know who is diabetic? Because they are not. I'm not the only one with these problems. Yeah, they all asked me like, how are you navigating the system? I told him I gave up on the system. And I finally just I started listening to other people who seem more educated. And I can probably tell you at least 500 people who have added themselves to your podcast. I've probably sent them there. I
Scott Benner 9:58
appreciate it. Well, thank you very much. does continue to grow it in a pretty incredible rate. When
Carol 10:02
I joined you in 2020, you had done your 10,000 people
Scott Benner 10:07
on the Facebook group. Yeah, yeah, that's 40,000 Now, it's insane. It's awesome. But it's insane. You know, what's funny is, there's an automatic, I used to do it myself, like every 300 people, I would put up a post and be like, Hey, welcome. Everybody hears these episodes like that kind of thing? It would you want that daily now? Well, it's now I automated it at 150 people. And it's happening like every four days. And crazy yeah, and I get this, you know, not not every time but every once in a while, someone will say, I don't understand, like, how often does this post go up? And they they attach the fact that there's so many people coming into the group as they go look at all these people who are getting diabetes. And I'm like, well, it's not a consideration. But I think the bigger consideration is look at all these people who were not getting reasonable help. And they're there because you don't end up in a Facebook group, or listening to a podcast unless
Carol 10:58
you don't end up online pleading for help through Facebook groups, because you're always told your whole life do not believe strangers. Don't believe everything you read online. Yes, but yet, for some reason, what I read online, is what helps me if it wasn't for the people in your group. And what I read through, you're like, I listened to you on Spotify. So between Spotify and the Facebook group, if I didn't listen to strangers, and believe what I read online, I would not be where I'm at today. Yeah.
Scott Benner 11:22
And those people still only make up the portion of people who were desirous and knowledgeable enough to deserve to want more to do better, and had the nerve to reach through the system that tells you don't go online and talk to people and then actually have the nerve to reach out. So when I look at that number 150 people every four days going into that Facebook group, I think, what a small number, because of how many other people are out there who are struggling, and we'll never go look for the help.
Carol 11:52
Me I look at it opposite. I'm like, what a shame the only 150 People who are struggling because I know, just from my own experience, 90% of diabetics
Scott Benner 12:01
are struggling. Yeah, no, I believe that I really do. Well, I just
Carol 12:05
wish more people that get on the train. I think a lot of people when you like a lot of people, I talk to you and you've been diabetic for 20 years. And even though you're doing the same thing over and over again, and it's wrong. They still feel safe because it came from a medical professional. Yeah,
Scott Benner 12:19
no, I know. I know. And I can't listen, I can't argue with them. I I've said this a million times the pocket. I wasn't prior to my daughter's diagnosis, a person who would have listened to somebody else, I would have made every one of them the same way. No, no, no. Yeah, I would have been like you're listening to someone on the internet. You're gonna die, you know? So, you know, or Tumeric does what? Yeah, and I don't know, like at this point now, I've had people on are like glucose goddess came on. And she just talked about eating in a certain order, like putting your foods in a certain order. I do that. I heard back from so many people about like, they're using less insulin or they're having like better outcomes. I'm like, oh my god, like, why don't we just listen to everybody and then figure it out for yourself?
Carol 13:00
Like I put myself on Metformin, for example, through my GP. Really? Yeah. And honestly, it was the best decision I ever made. Because as a ladder, I was chasing chasing highs and chasing lows. And according to my doctor, they just wanted you know, back then they were like, just turn up, turn up, turn up, turn up. And I was like, Okay, this doesn't make sense because I'm on bio meds. So I learned that the bio meds they're steroid based, like all bio meds are they cause a resistance in your body? Yeah. And the resistance was, was waking, like I'd gained almost 30 pounds and my doctors were like, it's okay, we'll put you on his epic. Well, I tried that train. And that didn't last long. As it was epic. I know why it's not meant for type ones you will yourself and puke out of every orifice of your body and food will be not appetizing. You'll almost go in DKA and I'm very well versed. And it's still it was a challenge but I added the Metformin the extra long release. Yeah 500 milligrams a day about the beginning of May I put myself on it, and I've lost 27 pounds. My insulin needs have cut down by 60% my carb ratio is now back one to 15 it was that one to eight. And yeah, it's
Scott Benner 14:15
so interesting how different things work for different people like you just That's
Carol 14:19
why I get mad at Doctors like why do you keep telling me well Susie did this so we're gonna do this for you. But I'm not Susie. I'm more like a SAM like, I work in trades. Yeah, I mean, like in a lot of doctors don't when I say I work in trades. I think I'm a flagger lady. I'm a carpenter. I'm a roofer. I do general contracting. I'm building a building right now that's 140 by 60 with a 20 foot ceiling and I've done every part of it from the concrete to right now on doing finishing work. So I'm not like Susie
Scott Benner 14:48
Oh, that's interesting. So Carol, when you tell somebody you work in trades, you think they think you're the person that stands to the side of the road and like wait,
Carol 14:56
I've been in trades 25 years and I mean way before autoimmune diseases I had a single one of them and it's pretty much the same thing. Like I tell people I work in trades, they usually assume I'm a laborer. I'm a helper, or I'm a flagger it's always it's very rare. Or even like if I voiced my opinion on Red Steel so me I've got three licenses even at work, I work with all men. And unless the men know me, and I pipe up, they usually kind of look at me like, why is she talking?
Scott Benner 15:27
She's sounds like a lot of fun. But I want to get back to my thought about like, those Olympic didn't work for you. But I've I've seen it work for other people with type one. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juice. Box. The Eversense CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days, I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link, you're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juicebox.
Carol 16:59
podcast I think it wouldn't work for me if I'm not so active. Okay. Because you really need I didn't really have an issue was more when I was working. Okay.
Scott Benner 17:08
Yeah, cuz I'm listen I'm taking we go V which is ozempic. It's just named something different. And I mean, a couple of things. You said that you can't argue with it like, like losing your your flavor for food, your tastes for food,
Carol 17:22
I lost my taste for food. I was pretty much I was living on like six units of insulin a day because I couldn't even eat. But I needed to, you know what I mean? Like so I know for a lot of diabetics, ozempic works great. But again, we're not all the same. And I think if I was more of a not so much a homebody but not so active in work. ozempic might have worked better for me. When I found that it was very hard to control. My burn at work. Well, the first few days I took it, it's stronger than the tail kind of thing. So I had like 16 profiles in my pump. And you know, sometimes you forget to change the profile. Right,
Scott Benner 17:57
Carol? Carol? I've been trying to say this to my wife, and she doesn't agree with me, but I think that too, it's a once weekly, injectable. And I always say to my wife, I lose weight in the first four days of the week. Yep. But I level. Oh, yeah. Three days. Yeah. And then you can check
Carol 18:15
it again. With symptoms, like I found my first three to four days, I was horrible. So what I would do is I would take you on a Friday, that way there I can get through that first couple days over the weekend and then go to work on the weekend. But my issue is is like somewhere I take bio meds. I can't inject them too close together.
Scott Benner 18:33
And your your BIOS or for what? Tell me again, I
Carol 18:37
have ankylosing spondylitis, rheumatoid arthritis, I have fibromyalgia. That's what the bio meds are for is for those ones. But the bio meds are given me a condition called NLD to skin condition. So I took my last biomed injection three weeks ago, to see if I can because I never had the issues before the biomed. So I'm kinda again no doctors. So my DP he trusts my opinion a lot. And he's awesome. I can get into him quickly. He kind of goes with my craziness. So yeah, we'll see how it goes. So far. The best drug I've added is the Metformin, honestly, yeah, it's helping you the most. Oh, 100%. Like I said, since May, I've lost 27 pounds and my insulin needs are like back to when I was first diagnosed and better. Like,
Scott Benner 19:23
are you scared about stopping the BIOS about what any of your like what condition that you're taking them for? Do you most don't want to see come back
Carol 19:33
to ankylosing spondylitis, just because of the fusion it causes in my spine and all my ball and socket joints. So I guess my biggest problem is, again, is lack of health care. So before COVID I was very sick, but no one would listen to me because I didn't look diabetic and they kept telling me it was paying conditions and stuff but deep down my thyroid was 37 My minerals were all out of whack. I was a type one but no one paid attention. That's it. just kept getting sicker and sicker in the body pain. My rheumatologist said, Well, it's time to put you on bio meds. And I wholeheartedly believe that. Now that I have my thyroid at 2.7, which I'm very proud of, by blood sugar is you know, 100% in control that I'm willing to take the chance to pull the biomed out to see if the instability and everything else because if you do look it up, like you know, thyroid, being out of whack does cause you know, body aches and issues and your sugars being out of whack. Same thing, you know, your iron, I'm anemic. I'm autoimmune anemic, but now I'm not because I had an injection called Elsmere. By looks like maple syrup. That's what I call it's my Canadian juice. But um, it's, I get it once a year, and it brings my blood iron up. So I feel that nap. But everything's balanced. I'd kind of like to pull the biomed out just because of, you know, the research you do on no one really knows the long term effects on it. So yeah, once I started getting the weight gain and the skin conditions, I kind of started weighing myself, you know, the options like, you know, what's the better, I guess? And the skin conditions are horrible.
Scott Benner 21:07
Yeah, I think you're pointing out something that it's interesting, because you have so many different autoimmune issues. And a lot of these medications are newer, the way I would look at it, if I was you as I'm trying to make it alive as long as I can, right and be mobile, right. And so if I've got to do one thing here for three years, then do another thing over here for whatever I need to do to keep leaping forward on the calendar is is what I would do. Is that how you think of it? I do,
Carol 21:32
but I also look at the long term effect of what I'm doing at the same time. So the biomed, like I said, like, there's a lot of issues with leukemia and stuff. When you look at the long term effects, it does increase your cancer rates and stuff. And there is other unknown issues that they can't really prove, but they can't disprove because again, I mean, they don't really have enough information on the drug. And I'm not one to being a guinea pig. So once the skin conditions there to come up that no one could figure out no dermatologists no no one then that's when I was like, Okay, it's gotta go. And as soon as I stopped the biomed skin condition cleared up. Well, that makes sense. Yeah, I'm no doctor, but to me, I don't feel it was a bad decision yet. Like said I work hard. And I don't have any pain yet. They told me within a week, I'd regret it. And I'm on week five, and the only body pain I have is working good. I mean, like work hard, you know, I mean, so I expect the problem I found on the biomed is I wasn't hurting. And that kind of scared me also, because what is this hiding? me the way I work, I should feel some sort of, you know, muscle soreness. You mean like To me that's just normal? Because I'm working like Superman when I was not. Yeah, when I was not feeling anything. I was like, Okay, this doesn't seem really natural either at the same time, like, so. Yeah, I went cold turkey. No. biomed no Tramadol, no opioids, no nothing, just pure
Scott Benner 23:02
CBD. And you've you did use opiates,
Carol 23:04
like primitive medical marijuana patient for 12 years.
Scott Benner 23:08
So what's the relief you get from the medical marijuana? Well, it depends on how you
Carol 23:13
use it like I like kind of versed myself pretty good in it. So I kind of have a mixture between CBD and THC. So when I'm at work example right now, I smoke pure CBD. And the CBD and CBG helps with pain and inflammation. I swear by it like so I've been doing it 12 years. And then the THC. I had PTSD and bipolar depression so I find that the THC kind of helps level me out mentally because I don't take any you know, Ritalin or lithium or anything for that either. So I'm pretty functioning for someone who's technically really broken I guess.
Scott Benner 23:47
Yeah. So okay, hold on a second. How do you smoke CBD? Is that is that like part of the flower or what do you do?
Carol 23:54
I well, I order online like I have in Canada we do legal. So my medical plan thankfully covers my marijuana so my prescriptions for five grams a day so I can order online through cannabis dispensaries. And I have creams I have SAVs I have oil I eat I have pills. I take I have meat I smoke. I have vapes. I smoke. I've even got freakin facewash bodywash is like if if there's a product out there you can pretty much get it with CBD in it now. And CBD is is the byproduct that you can't get high. Like I could literally drink every bottle of oil I have in my house and I won't get stoned. I'll get sick, but I won't get stoned. Yeah. And a lot of people don't know the differences between them. That's why people think meat is so taboo. Just get high like you're in high school and that's it. But yeah, if you know the difference, there's a huge difference.
Scott Benner 24:48
So when you say smoke, CBD, is it with a vape or is it with fire or how do you do that?
Carol 24:54
Well I have my vape cartridges, which is like probably like a rosin oil that goes into like a battery. Hmm, it burns off that way. And then I'll just I have this flower that I can bust up and roll like a joint. Okay.
Scott Benner 25:06
Okay, I got it. Oh, I was going backwards here for a second. But do you have autoimmune hemolytic? Anemia?
Carol 25:15
Yes. The one where I bleed really easy. Yeah. How
Scott Benner 25:18
did they diagnose that? Well, it
Carol 25:21
was a pain doctor, actually, who diagnosed it again, right up, like before COVID started and I was kind of like, my body was melting down, I went to go see a pain clinic. And he told asked me what kind of blood work and stuff I've had. And I kind of explained to him, you know, not too much. But, you know, they told me I had this, this and this. And he asked me if I'd be willing to do a couple tests and stuff with them. And I was like, okay, and he did some blood work and some mobility tests and stuff. And there are certain factors in my blood. If you have the right doctor that they can they can see it. Okay, well, there's like my inflammation markers. I'm trying to think of the name for it, but there's like an acronym for it. That they watch those very often. When I was first diagnosed with ALS, my markers were 900. And now my markers are seven G's. Wow,
Scott Benner 26:12
I'm super impressed. That's the name
Carol 26:14
of it. It's your it's your GSR reading and that will tell you in your blood, the inflammation in your body. GSR.
Scott Benner 26:20
GSR.
Carol 26:22
Yeah. Okay.
Scott Benner 26:26
Okay. Wow. And you've figured all this out, just because you had to. So finding me was not a big surprise, because you found something for every one of your issues.
Carol 26:34
I did. But you were my problem solver for diabetes, because I hadn't had any, any real good information for diabetes. Yeah, like I said, when I was diagnosed, it was, you're an adult, you can figure it out, here's your insulin, have a great day. And it was very heartbreaking honestly, because I had no clue what to do. And I'm terrified of needles. So for the first six months until I bought my own pump, I had to get my spouse to give me insulin. So how I would warm up to it because he's military. So he was coming at me like it was saving my life at war with an epinephrine pen, like I almost had a stroke. So how I kind of got him to do it and not be so like I'm saving your life kind of thing like is I would take my insulin and my butt cheek. So as a man, you can understand this that when your wife comes up and goes time for my insulin and sticks a batik in your face, you can be like, okay, and you're gonna be a lot nicer. So that's how we kind of got through that learning. Carol,
Scott Benner 27:28
you succeed up your insulin time
Carol 27:32
to make it fun. I do terrified of needles like I I am absolutely petrified, like, I need an additive and just to get blood work, even for my biomed I take an Ativan before I would even take my biomed because I was that scared of needles. So the pump for me was a no brainer. You
Scott Benner 27:51
know, that really is scared because I've now used these these fuego V pens a countless times and there's nothing to it and they don't hurt. So you really are no, it's
Carol 28:00
not even hurt. It's just the fact I find it so unnatural, right? Stick myself with something. And a lot of it too, is where I grew up. Like, I grew up in the ghetto. And like, the low income area of my province kind of thing. So growing up, we had a lot of crackheads, like drug addicts and stuff. And to me, needles were addiction thing. So I was always unless my doctor was doing the blood work. I could never do anything myself. Because to me, in my head, it was this is horrible. You shouldn't be injecting yourself. Yeah. And it was just a fear I always had. So it kind of, yeah, I was 14 when I got diagnosed. So it was stuck with me for 40 years. Yeah.
Scott Benner 28:37
How old are you now? Like 44? Okay. Are you still taking steroid injections?
Carol 28:43
No, nothing.
Scott Benner 28:44
So you stop the vitamins and the steroids? Yep, everything. Okay. Arden just got a cortisone shot in her shoulder yesterday.
Carol 28:51
So they're bad. They spiked my blood sugar for three days. Yeah. So
Scott Benner 28:55
like, it was she's had Hold on a second. There's an Apache helicopter going by. Let's wait a second. What is happening? If this is it, Carol, I assume this is the Canadians on the phone together. I think this is the Canadians coming for us right now. Actually, they finally had enough. He tried to burn us out earlier in the year when that didn't work for this smoke. I guess now they're gonna send helicopters.
Carol 29:16
Well, we only got two. So you know, I mean, like, if you see one, there's only one more like our Canadian military isn't very promising. You see one, there's only one and if you see it seeping in the air, it's coming down
Scott Benner 29:28
like that. So I guess Arden had like the guy diagnosed her with like an impingement like I guess her like, off the top of her shoulders kind of pinching on a I don't know, I obviously I was in the appointment didn't pay that close attention. But but you know, there's ligament in there and once it hits it a couple of times it gets a little swollen then you get caught in a loop and you kind of can't get out of that loop anymore. So artists like you know, for years, she's like my shoulder always hurts and the other day I Kelly's like, look at her back and it was swollen like the muscle down the side of her spine was swollen. I was like, What the hell she was my shoulder really hurts. And I'm like, well, your back is swollen. So we kind of like, Oh,
Carol 30:11
my abs started just to warn you. You're what? My Ankylosing Spondylitis Okay, go ahead, tell me how it started as was with the swollen muscles down the sides of my back, my shoulders, my ribs, my knees, anything that was a socket joint, just one after another became unmanageable to the point where my hips hurt so bad that they were talking about a hip replacement. And it came down to having abs and it's it's an HL HLA B one I believe you check for for your, your antibody. Okay. Well, you know, usually if you have one autoimmune disease, you've got more for sure. And if I remember, right, does your daughter have thyroid and arthritis or something? You
Scott Benner 30:55
know, it's funny, I don't know about. Like, I couldn't tell you if she has arthritis or not, I tell you that seems to move with her hormone shifts. Like her wrists will be sore for a couple of days or her knee or something like that. But it's this shoulder thing was specific. It started we felt like it started when she was playing softball. And she stopped playing softball because she couldn't throw a ball anymore. And then, you know, they asked her to do PT and she did PT and it like, I don't know, didn't really do anything. And so then for years, she just kind of like deals with it. Like every once a month when her hormones go the wrong way. She's like, I just need somebody to rub my shoulder blah, blah, blah, but mostly she's, it's mad. It's manageable, but she says it hurts most of the time. So you should, you
Carol 31:45
should look up CBD and CBG you won't get your daughter Hi. I know people who give it to their five year olds for epilepsy and stuff. But I played sports. I was rugby and lacrosse. And I played it right up until I was 25. And I found that CBD was always way better than any pain that I ever took. It was easier on the stomach. I didn't have to take it long term. It was one of those I took it as I needed it. And again, you don't get high there's no side effects. No pharmaceutical worry issues that become a new paradigm
Scott Benner 32:19
Are they like different strength? Like, oh
Carol 32:21
yeah, you can get is like you can micro dose with it or else you work your way up with it. Okay, that's interesting. And yeah, like I said, I use it for my rheumatoid arthritis and everything like, and that's just like under your tongue oil. Well, you can take on your your tung oil, or else you can get into capsule. Oh, no kidding. You can actually make the capsules yourself if you buy the oil. And then you buy the empty capsules, you can fill your cat. So I did for a while. I was like pre filled my capsules. So I had them at work and stuff. Okay, you can get the empty capsules, usually through your pharmacy. That's super
Scott Benner 32:53
interesting. Oh, yeah, I'll definitely look. And I'll ask about the test too, because, but for the moment, like, you know, the guy did the X ray goes like, structurally there's no I don't see a problem in here. And he's like, so you have two options. We can do PT, or we can do like this cortisone shot, and then you can do some PT and strengthen everything around it. And Artem was like looking at me like because we talked about it for two days. She's like, I'm not getting a shot my shoulder. She just had it for two days, then, you know, like, we get in there. And I'm like Arden, listen, if it was me, I take the cortisone shot, just to see if this helps. If it helps, and then you know, really, this is not an autoimmune thing. And it's just your shoulder, then, like, why not take the help from the cortisone and we'll deal with the blood sugars. And, and then you can kind of like see where where this goes. It's at least it's an easy thing to try. And she did. And it was it was amazing. Because prior to the the injection, the doctors like lift your arms, like you know, they do all that stuff. And a couple of places like Arden couldn't even lift her arm of overhead. Like just oh my goodness. Yeah, like she could get it up and it would stop or she could put them out to her sides. But she couldn't raise it past her shoulder like like that. And he pops this cortisone and like, I'm not lying. I was I've never been so amazed by anything in my entire life. And he goes and works in minutes. Holy God, he's like, Okay, stand up, do this, do this, do this. And she lifts her arm and it shoots up over her head. And she actually like the look of surprise on her face was insane. Just so happened. She's like, how the hell did my arm go up in the air like that? And I was like, wow, and she goes, holy crap. That's crazy. So anyway, she's you know, that we're gonna see how she is.
Carol 34:35
I did the cortisone that I started getting into where I had to have it all the time. I would imagine it's you know, and that's why I kind of was like, okay, there has to be another solution for this
Scott Benner 34:45
returns. Yeah. So she just said like, it's weak. It's the the pain causes weakness. So she has the pain and then she the weakness kind of comes from it like that. But she said until he looked at her yesterday, she didn't recognize that her right arm was weaker than her left arm.
Carol 35:01
That's crazy. He's probably just she just grew with it over time. Never really.
Scott Benner 35:05
Yeah. So I'm interested to see what happens. But at the same time, next time she gets a blood test, I'll ask to look for this to get know, well,
Carol 35:11
I would not tell them to check like for HLA markers in general, because usually, usually, if you have type one, and thyroid from what I've learned, and you're having odd pains, that usually means that you have an umbrella, you know, something in there, and rheumatoid arthritis, ankylosing spondylitis and fibromyalgia sister and a lot with diabetes in general. Yeah.
Scott Benner 35:36
Okay. I know, we'll definitely do that. I just wrote it down. So that must mean I have to do it. No. mean what the hell? You know, they mean. I mean, we're in the same situation. You are like Arden's endocrinologist. She's with an adult endo now, but we're not in Canada, but I did the same thing. Like, Arden goes to a doctor who's a cash pay Doctor Who doesn't take our insurance? And then I mean, we can then submit it to our insurance, and we recoup actually, almost all of our money back, it's not the cost is any different. Yeah, we're just lucky with our insurance. But if I said that to this doctor, she'd be like, Yeah, let's do it. Okay, so, yeah, that's my
Carol 36:16
doctor. I'm lucky because I do the same thing to him. I'm like, you know, what's it gonna hurt? And I mean, like, if the test comes back negative, well, then we were wrong kind of thing. But he did it 10 times so far. In the past couple years. I'm usually I'm not always right, right. But then I get their brains thinking like, oh, well, let's try this now kind of thing, right? Find
Scott Benner 36:34
that too. Like you can kind of get the doctors to think about it.
Carol 36:40
Well, once they get past the fact that they can realize you're not there just for the drugs, because sadly, a lot of people are Yeah. And body pain is one of those. If you can play the card, right? You're gonna get what you want, because it's very hard to prove it right without checking your GSRs and stuff. And that takes time. So a lot of doctors will you know, give out Tramadol, we'll say which I started on Tramadol. And it's, it's your gateway. Let's put it that way. Because when I first started with pain, Tramadol was what they gave me. And then the Tramadol didn't work that much. So then they put me up. And then next thing, you know, now I'm on Dilaudid. And then I was on fentanyl. And then I was on oxys there for a while. And then when it started getting to the point where I felt like I was in the movie, and I was one of those addicts. I went to my doctor and I was like, okay, like, you know, this isn't working kind of thing. Like, I can't work. I can't function. They're like, Yeah, but you have no pain. I'm like, sure, but I can't work. And I can't function like this, to me isn't natural. And all they ever wanted to do was push more drugs, more drugs, more drugs. I've been called noncompliant, so much, that I think it's my middle name. And I guarantee you it's written right across the top of my file
Scott Benner 37:52
in big bold letters. And that's for not wanting to take pain pills. That's
Carol 37:55
for not wanting to take painkillers. Okay? Because it same as with my biometrics. When I told them I stopped taking them. He told me he will have me as a doctor anymore, because I'm going against his medical advice. But his solution for my skin problem that I know was caused by this biometric was, well, this particular drug is good for psoriasis. And maybe you have psoriasis. So let's double the drug and see what happens. That's the most uneducated thing I've ever heard
Scott Benner 38:23
in my life. Oh, he wanted to give you more of the biomed one even
Carol 38:27
more, because he's like, Well, you know, maybe you're just maybe you have psoriasis. And I'm like, no, like, this isn't psoriasis. We already went through that, like I had a biopsy done through a dermatologist, and everything came back non conclusive. Nobody could figure out what it was. And I was like, No, I'm not open for doubling my drug. And he's like, Well, you're going against my wishes. And I was like, Well, I told you, I would like to take a break. And that's when he said, if you're not going to listen to me, then I can't be your doctor anymore. So technically, I don't even have a rheumatologist because I took myself off the drugs. But
Scott Benner 38:59
would it hurt him to let you just jump off it for a little bit and see what happens? Well,
Carol 39:02
his issue with me is is I've already proved him wrong. So I think I kind of hurt his ego. So when I first started with the bio meds I started the bio this particular biomed after I got diagnosed with type one, not long after because he wanted to put me on it at the same time, and I was like, No, I have too many other fires burning. I'd rather put out some fires before I add another drug. You know what I mean? Like, I didn't want that much in my system kind of thing. So when I started the drug, it was a very it was questionable anyway, so it's like I had so many other issues that I still to this day believe that all those other issues were making my pain worse because I'm very active. So I know that I don't have as tissues from fusion. I have zero fusion in my body. My inflammation markers are back at seven. So you mean something changed somewhere so I I felt coming off the biomed the worst that's gonna happen is when I do my blood work in two weeks. Bye. CSR might be a little higher, but then to me, that would be the proof. I would need to say, okay, Carol, maybe you need to go back on this. Yeah. All I wanted to do was to go off, have a break, see if the skin cleared up and check my inflammation marker. And he wasn't willing to do that. So that started proving to me that $6,791 In injection every three weeks, I have to pay 10% that I feel on the cash cow.
Scott Benner 40:25
Oh, oh, he's making a little money off the whole thing. Someone's making
Carol 40:29
money. Somebody I know when a new like, when your solution for my problem that only started when I started this firmer drug is give me more that tells me someone's paying you. You're not caring about my health is or else you would be like, okay, Carol, I see what you're saying. Let's try something new. Yeah, interest, but instead he wanted to give me more. I'm kind of glad that we don't really, you know, we're not a doctor patient anymore. But the other issue you have in New Brunswick, for example, is we only have two and a half endos in this whole province. I say half because one doctor is an internal medicine doctor. He claims to be an endo, but she's not an endo. I know I've had her. And she doesn't like me. She doesn't believe in Pre-Bolus saying she doesn't. Yeah, she said Pre-Bolus thing is taboo. I just kind of looked at her like, huh, like and I kind of look I said, Okay, so you mean to tell me that? When I put insulin in my body? You think it works right away? He goes, Yeah, I said, but it doesn't. I said it goes through your skin like it has to absorb. I mean, you gotta give him time to work. And he goes, That's ridiculous. And I'm like, No, it's not. So to me, that told me that you're an internal medicine doctor, you're practicing medicine. You're not mastering medicine. You're still practicing. Because you'll know it. Yeah. Like, I just heard other solutions for diabetes was just I wasn't comfortable with it. It was always you know, we'll try this and I'll see in six months. Yeah. But then I never got a call. And then because of COVID it was, oh, well, we looked at your blood work and due to COVID We can't see right now. And I'm not vaccinate. It's like a big one up here. Like I'm like the ain't Christ up here. Okay. So, where I was on biomed I have so many autoimmune diseases. I was told you have to get vaccinated, you need like 17 doses or you're going to die. And I was like, okay, but my bio meds I was on when you look at the pamphlet, this is how I like this is why I have no trust in pharmaceuticals or medical. So when you look at the pamphlet on the biomed it says right on it. You can't take flu meds. I can't take antibiotics. I can't take vaccines. I can't take anything. But they want me to get vaccinated. That was like Nananana. So I held out. Well, I never caught COVID I never got sick, I worked the whole pandemic in trades. And I proved them wrong. So they don't like me. So my rheumatologist when it came to with him, I told him what the biomed. So I was like I said, the biomems are causing an issue with my diabetes. And he's like, Oh, you're ridiculous. I'm like, No, I'm not. I was like, before I started the biomed I only needed X amount of insulin. So now since the biomass, I need 30% more so either I'm sick, or something's causing a resistance. And he's like, no, no, no, no, no. So airoldi. And Carol does the research. I like it. And I'm very fortunate. My brother in law is a research doctor at one of the hospitals in the city. So I talked to him a lot. And he agreed with me that no your doctor is wrong. And those bio meds you know, there is cortisone and there is steroids and stuff in them kind of thing. And it will cause you resistance. So I went back into the doctor with the information from my brother in law, and he straight up told me I was wrong again. I'm like, wow. Looking at the proof, right? Like,
Scott Benner 43:45
I don't understand that you couldn't go to a doctor and say, hey, look in the package insert for this medication I take it says for me not to take a vaccine. So
Carol 43:54
yeah, but Dr. Trudeau so I had an exemption, they gave me an exemption. So I wasn't, you know, forced to be vaccinated. And then or darling Sackboy Premier, their pre a prime minister there decided that on September 28 of 2021, he was canceling all medical exemptions. So pretty much in Canada, you get vaccinated. And if the vaccine doesn't kill you, then you get a second dose. That's how it works out here. What's nice, yeah, tell me about it. I wasn't able, wasn't able to work at because up till September 28. I had this exemption. So I was allowed on the law job sites and stuff because we do a lot of government work. So in order to be on a government site, even today, no, I said you have to be vaccinated, right. So I had this exemption, and then September 28 came in my exemption was null and void. So I had told my boss I can't come into work. And we were joking about it. I was like, but I can call buddy up on the reserve there and I can get a fake vaccine passport if you want. I can just carry it in my wallet. Because up here it's just a piece of paper right like frickin 12 Euro can make you one and week out, laughed and joked about it and stuff. Nice But now he goes, you hold your ground, and you still get to be vaccinated. And Carol is still working. So so far I'm winning. Because up here we have such a shortage in labor. Well, you can fire me. Yeah. I mean, you need me like
Scott Benner 45:15
the ban on the exemptions get lifted, or does that still exist? It still exists. Okay.
Carol 45:20
Yeah, they backed off a bit on the force of it to a point but not really. And it's not the nominee anti Vaxxer. Like everybody's like, Oh, you know, you just don't believe in science. Oh, I believe in science, like I, you know, you're
Scott Benner 45:35
also holding a package and says, it's telling me not to do this. So
Carol 45:38
Exactly. Yeah. Because before I couldn't get a flu shot, I couldn't use it. So how it came down to another one of those money. I mean, like, if you cared about my health, you'd follow my exemption, and you follow my doctor's orders. But it got so bad up here that even my, my doctor told me, he goes, I know you're right. But if I tell you, you're right, I'll lose my job.
Scott Benner 46:01
It's a weird system. I guess the way it runs up
Carol 46:04
here. It's horrible. Like, I don't know if you've even paid like, if you pay attention to how Canada is going right now. But we can't even see your own news. You can see who decided he made this Bill C 18. So now he expects Facebook, and Google and everybody to pay the government, for us to share our local news. So if I want to go on Facebook and share an article, I'm not allowed as Facebook because our Canadian government expects Facebook to pay the government for the the ability to share Canadian news. And now Trudeau is getting mad at Facebook, because they're not following suit. He's like you're making billions of dollars off of you know, Canadian content. No, they're not. I don't know anything. That's their business. It's not up to you. It's so broken up here. I
Scott Benner 46:57
don't know about your politics. But I can tell you what being Prime Minister's made him look really old pretty quickly.
Carol 47:02
Yes, that's because of his five vaccines, probably. And all the stress he's going through.
Scott Benner 47:08
He was so handsome when he started.
Carol 47:10
Yeah. And then he opened his mouth and he got really ugly. That's
Scott Benner 47:14
crazy. Okay, so we have I'm looking through your whole thing. In we still like, this is just kind of a check back in from you since your other episode. So like, I first of all, I was really thrilled to hear how well you're managing your thyroid stuff. Because when you tell that story about having a TSH in the 30s I can't even wrap my head around how terrible you must have felt like with
Carol 47:43
that, I felt like death. Like I don't even like know how else to describe it. Besides, I went into my doctor, and I pretty much threw my medical insurance, my health card in my wallet on the counter. And I said, whatever it takes fix me. Like, I can't keep living like this. And they finally took me seriously but my thyroid didn't get diagnosed until I went into DKA. It had to be horrible. It was kind of one of those when I hit the hospital, they were like, Oh, by the way, you know, you have type one diabetes and you have you know, I think it's Hashmi knows where my thyroid stays high. Hashimotos Yeah, Moto Yeah. And I was just like, wow, like and this was things I had been, you know, wondering about but yeah, it was, I didn't know how to describe besides saying that. I felt like I was gonna die like my chest because I always felt like I had like pneumonia. And my body like, I was walking like Mr. Burns, if that makes sense. Like I just couldn't straight Nope, because everything was so sore. That it just yeah, like and then once my thyroid came down, like, oh my god the difference like it's crazy.
Scott Benner 48:49
It's such a tiny little thing. And it just,
Carol 48:51
I lost so much weight like I was to the point where like, I was unhealthy looking at my skin was almost GRAY Like it was oh, like I never wanted to go back
Scott Benner 49:01
there. Yeah. And now you just take a Synthroid. Yeah,
Carol 49:05
I take the largest pill, you can take the two milligram. Wow. And I guess it's not ever stops working. And my TSH goes back up. I have to get my wings clipped on my thyroid. Yes. paraphonic grandmother had it done like back in like the 60s kind of thing really told me that it's Yeah, and I didn't learn about that until after I was diagnosed because I I was raised by my grandparents. So I was very young when they passed. So I don't really remember like a whole lot kind of thing. So when I got sick, thanks to Facebook, I put out a post and one of my aunts came back to me and he's like, Yeah, your grandmother had that. That was like, Oh, I remember the scar on your neck. But he smoked two and a half packs of cigarettes a day. So I mean, like that might be tracheotomy or something at one point like I wasn't never really. I'd had thyroid disease about that. So she had her like, I don't know my father. So like I own We really have one side of my bloodline I can really explore. So,
Scott Benner 50:04
yeah. So do you think she had like her parathyroids removed?
Carol 50:08
That's my aunt's. And my aunt said that she pretty much had almost her whole thyroid removed.
Scott Benner 50:12
No kidding. Yeah, something.
Carol 50:15
Right. And that was the only way I guess back then that they pretty much controlled thyroid diseases, they would clip your thyroid back. Like you would go in and they would clip off a bit and see how it works. If that didn't work, they take a little bit more and
Scott Benner 50:29
kind of go that way. Does not seem technical at all. Does that count? Not at all? No, I'm
Carol 50:34
kind of glad that medicine has COVID Since
Scott Benner 50:40
the way you were saying that I was like, oh, god that probably they were probably like, just tried this piece. Let's see what happens. I got my
Carol 50:46
uncle who was diagnosed with cancer in the 50s. He had it in his foot. And all they did was just keep cutting back then. So they cut off his foot. And they didn't know what they were doing back then. So obviously there was a little bit less than it came back. So then they cut him off to the knee. And then a year and a bit later, they cut them off at the hip. And then he still ended up passing away. It's seven and a half years old. But that was what they did in the 50s. For Yeah. I mean, I'm very glad that medicine has evolved. I just wish I could access it. Yeah, I mean,
Scott Benner 51:16
honestly, you are a great example, obviously. But without these medications, you would be crinkled up in a ball right now on my upset. Yeah, pile on painkillers. Yeah, yeah. That's something Jesus wins your first I know, we probably went over this the other episode, but when was your first medical condition?
Carol 51:34
My first mental medical condition was a condition called beuliss pemphigoid. It's actually an autoimmune disease. It's a skin condition. And it causes like, big blisters and stuff on your skin. A lot of the time they think it's a back in the 80s. I told my grandparents, I had herpes, I had scabies. I told them I had HIV. And then eventually they deemed it down to this beuliss pemphigoid. But that was my first one. And I was in grade three. Wow. So when you were and then after that I was in high school and I got diagnosed with anemia. I was in grade 10 I passed my playing rugby. And they thought I just got hit. And I had like a concussion and come to find out that my iron was so low that I was pretty much borderline have a blood transfusion. Okay. And then that was number two. And then after that it just like honestly, some of them I don't even know if I have my thing. Sometimes I just pulled the name of the hat and went well, we'll go with this one this month and see what happens. Because as I kind of fixed other stuff, like I've never felt better than I do today. And I barely take any medication. So I'm tempted one day to try and find another doctor when we have more and actually get properly retested instead of by a doctor who's making money off of me. But um, yeah, I think that I think the 11 I have on paper. I think about three or four of them were misdiagnosis is of other things because they told me I had diabetes for years. Like after my pain doctor, actually very smart man walked through my past blood works. And he was like these blood works. We're fasting blood works Did you eat before you went? And I'm like, No, why would I eat? He said, Well, your blood sugar was 9.5 at seven o'clock in the morning. I'm like, No. And then he was like, suddenly started looking more and more. And he's like, honestly, Carol, he's like, I think you've been diabetic a while. But I've worked treats my whole life. So yeah, he's like, I think your job is what kept you undiagnosed. Because what got me so sick was COVID when COVID first started, the world shut down. So I wasn't able to work. He stopped moving. And I stopped moving. Yeah, I wasn't allowed to go out. I was I wasn't allowed in the woods on my four wheeler. I mean, we were very like you guys were very all locked up for a while. Yeah. And Tick Tick, tick tick tick tick tick to me it just kept going. And he swears that me stopping working is what brought it out but he's like if coping with it happened. He's like you're so active. He's and you probably want to live like this for another five plus years might not even notice for a while. Yeah, he said you've probably he said looking back because he could only go back five years on my bloodwork. And all my blood work was the same this whole five years. When I was pregnant with my children. My blood work was high and they just again contributed to she's pregnant. She probably ate. Like he said I had gestational diabetes with both my last two children. It was just missed because I didn't look diabetic. And yeah, how are your kids? My kids are great. I did the trial net with all three of them. Not one of them has the marker. My killed I have a grandson too. He has no markers. My kids are 2518 and almost seven. And all three of them are super healthy. My middle daughter is on Team Canada for cheerleading my son's in trades themselves. And I find that they take better care of themselves after watching what I went through and seeing how taking better care of yourself has helped me being even though I'm so sick Yeah, like I make my own everything because I don't trust food anymore. So like I make my own butters, Manos yogurt, sour creams, anything I can make because I find everything from the store has so much added sugar. And it's not on the label. No,
Scott Benner 55:13
I mean it getting clean food is I think it's really important. I don't know. Yeah. Or
Carol 55:20
three and a half hours out of the closest major city and we bought since I talked to you we bought a homestead in the middle of nowhere is in New Brunswick. I grow all my own food. I have chickens. I have a pig. I've got turkeys meat birds. Like I'm pretty much almost right now. And like I said, I've never felt better.
Scott Benner 55:38
Wow. Good for you. That's wonderful. Really is your rotation
Carol 55:41
tells me I'm crazy. But it's okay. Like you're crazy.
Scott Benner 55:45
Are you you're at work right now, right? Oh, yeah. Yeah. Fantastic. I don't know. I think you're terrific. I'm so glad you came back. Are we missing anything? As far as an update goes, I feel like we hit the things
Carol 55:57
that like since I talked to you pretty much I just keep. I had relisted two more times, because I made a post there when I was really low at work. And the lady that helps you out her name begins with why amazing lady. She directed me to a couple of podcasts I'd forgot. And those podcasts are what tweaked it around so that I don't go low at work anymore. And then there was another guy in your group who's in trades like me, who's a type one and me and him kind of started passionately, you know, tricks help each other out kind of thing. And honestly, no, thanks to health care. But yeah, I'm doing amazing.
Scott Benner 56:30
Isabelle helped you. That's her name. Yeah, she's JDRF.
Carol 56:34
Up here for New Brunswick, we actually fought. I think I made a poster actually on the group there a couple of months ago, where our provincial government is now covering all type one supplies, CGM pumps, it doesn't matter your age anymore. Before it was when you hit 18, you were on your own. And now, as long as you're not making, you know, crazy amounts of money, the province actually helps you now. Good for you. That's terrific. I have a reserve next to me where I help a lot. Unfortunately, the reserves have a lot of type two diabetics up here. And it's sadly because of the way people are forced to eat because of the cost of living up here. Yeah, I helped build type twos with the staff in which I've learned from you and pretty much a lot of them now have learned proper eating and how to use insulin is even on type twos. No one really teaches them anything. They just kind of give them the, you know, the 10 units a meal and pray pretty much and
Scott Benner 57:27
yeah, yeah. No, I, when Jenny and I made the type to Pro Tip series, I said, like I said, Jenny, I'm like, this is gonna, like I think this is so important. You know, I know what to type on podcast, and some people aren't going to download it. I was like, but there's so many people who know other people. And this is not the kind of thing it's not the kind of information they go out and look for. So I said, I think just
Carol 57:48
my mom's and type two. Yeah. But honestly, I believe my mom is like me, like, I know my real mom. And he has horrible health. And he's had type two diabetes, according to her doctor since he was in her 20s. And she just turned 60. And no matter how much Metformin she takes How much ozempic She takes, how much insulin she takes, he keeps gaining weight, everything keeps getting worse. She's to the point. Now she's in Stage Five, kidney failure, oh my gosh. And it's all because of her diabetes management. She won't listen to me. I've tried helping her, but he's the one that my doctor never told me. So it's kind of sad at the fact that I could, if she would listen, it could help but she's abused herself so long that he's beyond help. They won't approve of her transplant. They won't approve her for dialysis, because they told her where she can't monitor her blood sugar that they don't trust her with a carry dialysis machine. So she can do it at home. But I believe that my mom is allowed to like me, but she won't go to her doctor and get the test.
Scott Benner 59:00
I people just
Carol 59:01
watching her and stuff like and seeing seeing how she does things. And you know what she does if she was tight, too, it should work. But it doesn't work. And where I have a ladder? I believe it's hereditary from what I've learned came from somewhere.
Scott Benner 59:17
Yeah, I would just I wouldn't think so that eventually the lot of would just get to type one. I think it would, it seems uncommon for me for her to live that many.
Carol 59:26
My doctor told me he said ladder. It does. It is type one it just all it is is your body took longer to react. Yeah, I
Scott Benner 59:34
mean, all the way to like boom, like you'd need insulin where you're dead. Like, it's I don't know, like, I don't know if I've ever heard anybody living with a lot of that long. Not to say that it couldn't happen, I guess but I just I've never heard that before. It just sucks that How old is she? 60. Yeah, that's too young to not like
Carol 59:53
120 units of insulin in total a day
Scott Benner 59:58
and eating Yeah, and she's on Metformin.
Carol 1:00:01
Yep, 1000 milligrams of metformin. Is that all I know, is
Scott Benner 1:00:06
that is that an insulin need? Or is she eating in a way that's supporting that insulin need as well? Oh,
Carol 1:00:11
no, she doesn't. He doesn't dose right, because no one's ever taught her. So he just does what her doctor tells her to do 10 units every meal, and then she eats whatever she wants. Yeah, that's what they told her to
Scott Benner 1:00:23
do. Yeah, I think that really is the kind of unspoken plan, like just will just keep them going. As long as they're setting people up for disaster, ya know, for sure. But I think that's, I think that's what they're doing. Like, I think they, in some situations, people just don't understand. And they, they look at you like, well, you're on the path of destruction now. So we'll just slow down that travels best we can. And at the end, you'll crash into the end of it and die from something from this type two diabetes.
Carol 1:00:54
It kind of makes my mother very depressed and hateful at me too, because I get diagnosed way later than her. And I fixed myself if she hates me, for it calls me to show off. Yeah. You're either diabetic, and I'm like, I'm positive. Like, I wear a pump. Like I know. I'm diabetic. I just She really does. Kind of thing. Yeah, like when I'm at her house, or she's at my house. She gets mad at me because the wants something. I'm like, take your insulin. He's like, Yeah, I'm like, I'm not giving you anything until you take your insulin like I have to treat her like a child and it sucks. But I can't let her do that in front of me.
Scott Benner 1:01:31
Yeah, it's hard to say we mean like, yeah, we spoke a lot about your family and the other episode, right? Yeah, yeah. Yeah, it's not. You didn't grow up with the Brady Bunch?
Carol 1:01:40
No, no. Oh, God, no. Yeah. My grandfather were the World War Two vet, and he believed in capital punishment. So yeah. I am 44 years old, and I do not drink. I've never been drunk because of my grandfather. Because
Scott Benner 1:01:56
that's how scared you were in Canada. You didn't drink. That's crazy.
Carol 1:02:01
Smoke lots of weed, but I never drink in the back of my head at 44 I still hear my dad, if I catch you, I'm gonna kick your
Scott Benner 1:02:08
ass. And I just, I had a conversation with a person in their 50s recently, and I asked them if they ever considered smoking weed. And that person said no. And I said why not? And probably for the same reason. They said I I just think it would my parents would feel let down a person in their 50s concerning me with drinking. Yeah, concerned about their parents in their 70s probably the end of their life almost, you know, even maybe older is what I'm saying. And my
Carol 1:02:36
grandfather is even alive. He died when I was 21. And I'm still terrified. He's gonna come haunt me if I drink. Yeah,
Scott Benner 1:02:42
no, that's really interesting.
Carol 1:02:44
Like, because fear
Scott Benner 1:02:46
works. Oh, my gosh. All right, Charles, I could talk to you forever, but I'm gonna let you get back to work. I appreciate you spending this hour with me very much. And coming back and filling everybody in. Like I said before, thanks for the checkups. Oh my god, Carol was on episode 586. It was called body fire. And you should check it out. Thank you hold on one second for me.
I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast and invite you to go to ever sent cgm.com/juicebox to learn more about this terrific device. You can head over now and just absorb everything that the website has to offer. And that way you'll know if ever sense feels right for you ever since cgm.com/juicebox. Jalen is an incredible example of what so many experienced living with diabetes. You show up for yourself and others every day, never letting diabetes define you. And that is what the Medtronic champion community is all about. Each of us is strong and together, we're even stronger. To hear more stories from the Medtronic champion community or to share your own story visit Medtronic diabetes.com/juicebox And look out online for the hashtag Medtronic champion. Thank you so much for listening. I hope you enjoy my full conversation with Jalen coming up in just a moment. The diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about. Travel and exercise the hydration and even trampolines juicebox podcast.com Go up in the menu and click on diabetes variables. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one, two Diabetes on Facebook. Thanks for hanging out until the end. Now you're going to hear my entire conversation with Jalen don't forget Medtronic diabetes.com/juice box or the hashtag Medtronic champion on your favorite social media platform. My
Speaker 1 1:05:15
name is Jalen Mayfield. I am 29 years old. I live in Milwaukee, Wisconsin, where I am originally from Waynesboro, Mississippi. So I've kind of traveled all over. I've just landed here in the Midwest and haven't left since. Nice.
Scott Benner 1:05:30
How old? were you when you were diagnosed with type one diabetes?
Speaker 1 1:05:32
I was 14 years old when I was diagnosed with type one diabetes
Scott Benner 1:05:36
15 years ago. Wow. Yes. Okay. 14 years old. What do you like? Do you remember what grade you were in?
Speaker 1 1:05:41
I actually do because we we have like an eighth grade promotion. So I had just had a great promotion. So I was going straight into high school. So it was a summer, heading into high school
Scott Benner 1:05:50
was that particularly difficult going into high school with this new thing? I
Speaker 1 1:05:54
was unimaginable. You know, I missed my entire summer. So I went, I was going to a brand new school with, you know, our community, we brought three different schools together. So I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was,
Scott Benner 1:06:15
did you even know? Or were you just learning at the same time, I
Speaker 1 1:06:18
honestly was learning at the same time, my hometown did not have an endocrinologist. So I was traveling almost over an hour to the nearest you know, pediatrician, like endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown.
Scott Benner 1:06:35
Was there any expectation of diabetes? Is somebody else in your family have type one? No, I
Unknown Speaker 1:06:40
was the first one to have type one in my family.
Scott Benner 1:06:42
And do you have children? Now?
Unknown Speaker 1:06:44
I do not know.
Scott Benner 1:06:45
Do you think you will one day, still
Speaker 1 1:06:47
thinking about it? But right now, I've just been traveling books at all my career myself. So
Scott Benner 1:06:52
what do you do? What's your career? Yeah, so
Speaker 1 1:06:54
I am a marketing leasing specialist for a student housing company. So we oversee about 90 properties throughout the US. So I've been working for them for about eight years now. And you get to travel a lot in that job. Yes, I experienced a lot of travel. It's fun, but also difficult, especially with all your type one diabetes supplies, and all your electronics. So it's a bit of a hassle sometimes.
Scott Benner 1:07:16
What do you find that you absolutely need with you while you're traveling? diabetes wise,
Speaker 1 1:07:21
I have learned my biggest thing I need is some type of glucose. I have experienced lows, whether that's on a flight traveling, walking through the airport, and I used to always experience just being nervous to ask for some type of snack or anything. So I just felt, I felt like I needed to always have something on me. And that has made it my travel a lot easier.
Scott Benner 1:07:43
So growing up in the small town, what was your initial challenge during diagnosis? And what other challenges did you find along the way?
Speaker 1 1:07:53
Yeah, I think the initial one, I felt isolated, I had no one to talk to that it was experiencing what I was going through, you know, they were people would say, Oh, I know, this is like hard for you. But I was like, you really don't like I, I just felt lonely. I didn't know you know, people were watching everything I did. He was like, You can't eat this. You can't eat that. I felt like all of my childhood had been you know, I don't even remember what it was like for life before diabetes at this point, because I felt like that's the only thing I could focus on was trying to do a life with type one diabetes,
Scott Benner 1:08:28
when you found yourself misunderstood? Did you try to explain to people or did you find it easier just to stay private?
Speaker 1 1:08:35
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just, you know, kept it to myself didn't really talk about it when I absolutely had to,
Scott Benner 1:08:52
did you eventually find people in real life that you could confide in? I
Speaker 1 1:08:57
think I never really got the experience until after getting to college. And then once I graduated college, and moving to an even bigger town, that's what I finally found out was people were I was like, Okay, there's a lot of other people that have type one diabetes. And you know, there's a community out there, which I had never experienced before, is college
Scott Benner 1:09:18
where you met somebody with diabetes for the first time or just where you met more people with different ways of thinking.
Speaker 1 1:09:24
So I met my first person with diabetes, actually, my freshman year of high school, there was only one other person and he had had it since he was a kid like y'all once this was like, maybe born or like right after that timeframe. So that was the only other person I knew until I got to college and I started meeting other people. I was a member of the band and I was an RA. So I was like, Okay, there's, you know, there's a small handful of people also at my university, but then, once I moved to I moved to St. Louis, and a lot of my friends I met were like med students and they were young professionals. And that's where I started. Really getting involved with one of my really close friends to this day, he was also a type one diabetic. And I was like, that's who introduced me to all these different types of communities and technologies, and which is really what helped jumpstart my learning more. And with type one diabetes.
Scott Benner 1:10:15
Do you think I mean, there was that one person in high school, but you were young? Do you really think you were ready to build a relationship and around diabetes? Or did you even know the reason why that would be important at the time?
Speaker 1 1:10:26
I didn't know you know, I honestly didn't think about it, I just was i Oh, there's another person in my class that's kind of going through the same thing as I am. But they've also had it a lot longer than I have. So they kind of got it down. They don't really talk about it. And I was like, Well, I don't really have much to, like, connect with him. So sorry, connect with them all. Yeah,
Scott Benner 1:10:46
no. So now once your world expands as far as different people, different backgrounds, different places in college, you see the need to connect in real life, but there's still only a few people, but there's still value in that. Right?
Unknown Speaker 1:10:58
Correct.
Scott Benner 1:11:00
What do you think that value was at the time?
Speaker 1 1:11:02
I think it was just what making me feel like I was just a normal person. I just wanted that. And I just, I needed to know that. Like, you know, there was other people out there with type one diabetes experiencing the same type of, you know, thoughts that I was having.
Scott Benner 1:11:17
When were you first introduced to the Medtronic champions community? Yeah.
Speaker 1 1:11:22
So about two years ago, I was, you know, becoming more I was looking around and I noticed stumbled upon the Medtronic community. And I was like, this is something I really, really, I kind of need, you know, I said, I, all throughout these years, I was, you know, afraid to show my pump. You couldn't, I would wear long sleeves, like, didn't want people to see my CGM, because I didn't want people to ask me questions. And you know, I just felt so uncomfortable. And then I noticed seeing these people really, in the Medtronic community just, they embraced it, you can see and they weren't afraid to show it. And that was something I was really looking forward to.
Scott Benner 1:11:57
How was it knowing that your diabetes technology is such an important part of your health and your care? And having to hide it? What did it feel like to have to hide that diabetes technology? And how did it feel to be able to kind of let it go,
Speaker 1 1:12:10
I will refuse to go anywhere, like, Hey, I would run to the bathroom, I just didn't want to do it in public, because I felt like people were watching me. And that was just one of the hardest things I was trying to overcome. You know, I was fresh out of college, going into the professional world. So you know, going out on work events and things like that. I just, I just didn't think I just didn't think to have it out. Because I was so afraid. But then, once I did start, you know, embracing again and showing it that's when the curiosity came and it was actually genuine questions and people wanting to know more about the equipment that I'm on, and how does this work? And what does this mean? And things like that, which made it kind of inspired me? Because I was like, Okay, people actually do want to understand what I'm experiencing with type one diabetes.
Scott Benner 1:12:55
What did you experience when, when the internet came into play? And now suddenly as easy as a hashtag, and you can meet all these other people who are living with diabetes as well? Can you tell me how that is? Either different or valuable? I guess, compared to meeting a few people in real life?
Speaker 1 1:13:12
Absolutely. I think if you look back from when I was first diagnosed to now, you, I would have never thought of like, you know, searching anything for someone with, you know, type one diabetes. And now it's like, it's all I see, you know, you can easily search Medtronic champions, and you see people that pop up, and you're like, wow, look at all this content. And I think that's something that that kind of just motivates me, and which is how I've kind of came out of my shell and started embracing more and posting more on my social media with about, you know, how I live with type one diabetes. And I think that's something that I hope can inspire everyone else. What
Scott Benner 1:13:47
was it like having more personal intimate relationships in college with type one?
Speaker 1 1:13:51
I think it was kind of hard to explain, you know, just, for example, like, no one really knows, it understands like what alo is. And I think that was a very hard thing for me to explain, like I, you know, it can happen in a in a moment, and I'm sweating. I'm just really like, not all there. And I'm trying to explain like, Hey, this is what's going on, I'd need your help. And I think that was something that was hard for me to, you know, I did talk to people about it. So when this happened, they were like, oh, you know what's going on with your mate? I'm actually a type one diabetic. This is what's going on.
Scott Benner 1:14:26
I need your help. What about once you've had an experience like that in front of someone? Was it always bonding or did it ever have people kind of step back and be maybe more leery of your relationship? After
Speaker 1 1:14:42
I would tell someone I had type one diabetes after some type of regenerate damage, they were kind of more upset with me that I didn't tell them up front. Because they really you know, I care about you as a person I would have loved to knowing this about you. It's not anything you should have to hide from me. And that was a lot of the realization that I was going through with a lot of people.
Scott Benner 1:14:59
Okay, Hey, let me ask you this. So now we talked about what it was like to be low, and to have that more kind of emergent situation. But what about when your blood sugar has been high or stubborn? And you're not thinking correctly, but it's not as obvious maybe to you or to them? Yeah.
Speaker 1 1:15:14
So I also I go through my same experiences when I have high blood sugars, you know, I can tell like, for my co workers, for example, I didn't really talk to you know, when I go out backtrack, when I visit multiple sites for work, I usually don't announce it. And so sometimes, I'm working throughout the day, I might have snacks, forgot to take some insulin, and my blood sugar is running high, and I'm a little bit more irritable, I'm all over the place. And I'm like, let me stop. Hey, guys, I need to like take some insulin, and I'm sorry, I'm not I didn't tell you guys. I'm a diabetic. So you may be wondering why I'm kind of just a little bit snippy, you know, so I like to make sure I do that now going forward, because that's something I noticed. And it was kind of hindering me in my career, because I was, you know, getting irritable, because I'm working nonstop. And I'm forgetting to take a step back and focus on my diabetes,
Scott Benner 1:16:04
right? Hey, with the advent of new technologies, like Medtronic, CGM, and other diabetes technology, can you tell me how that's improved your life and those interactions with people?
Speaker 1 1:16:15
Yeah, I can. I feel confident knowing that it's working in the background, as someone and I've always at least said it, I have been someone that's really bad with counting my carbs. So sometimes I kind of undershoot it because I'm scared. But it allows me to just know that, hey, it's gonna it's got my back if I forget something, and I think that allows me to have a quick, have a quick lunch. And then I'm able to get back into the work day because it's such a fast paced industry that I work in. So sometimes it is easy to forget. And so I love that I have that system that's keeping track everything for me.
Scott Benner 1:16:49
Let me ask you one last question. When you have interactions online with other people who have type one diabetes, what social media do you find the most valuable for you personally? Like? What platforms do you see the most people and have the most good interactions on?
Speaker 1 1:17:05
Yeah, I've honestly, I've had tremendous interactions on Instagram. That's where I've kind of seen a lot of other diabetics reach out to me and ask me questions, or comment and be like, Hey, you're experiencing this too. But I've recently also been seeing tiktoks And, you know, finding on that side of it, I didn't, you know, see the videos and upload videos, and I might, I would love to do stuff like that, but I just never had the courage. So I've seen people make like just a fun engagement videos now, which I love, you know, really bringing that awareness to diabetes.
Scott Benner 1:17:35
Isn't it interesting? Maybe you don't know this, but there's some sort of an age cut off somewhere where there is an entire world of people with type one diabetes existing on Facebook, that don't go into Tik Tok or Instagram and vice versa. Yeah. And I do think it's pretty broken down by, you know, when that platform was most popular for those people by age, but your younger people, I'm acting like, I'm 100 years old, but younger people seem to enjoy video more.
Speaker 1 1:18:01
Yes, I think it's just because it's something you see. And so it's like, and I think that one thing, and obviously, it's a big stereotype around diabetes is you don't like you have diabetes. And that's something I always face. And so when I see other people that are just, you know, normal, everyday people, and I'm like, they have type one diabetes, just like me, they're literally living their life having fun. That's just something you want to see it because you don't get to see people living their everyday lives with diabetes. And I think that's something I've really enjoyed.
Scott Benner 1:18:31
What are your health goals? When you go to the endocrinologist, and you make a plan for the next few months? What are you hoping to achieve? And where do you struggle? And where do you see your successes,
Speaker 1 1:18:41
I'll be honest, I was not someone who is you know, involved with my diabetes, I wasn't really focused on my health. And that was something that, you know, you go into an endocrinologist and you get these results back. And it's not what you want to hear. It makes you nervous, it makes you scare and so I personally for myself, you know, I was like, This is my chance. This is my chance to change. I know there's people that are living just like me, everyday lives, and they can keep their agencies and their blood sugar's under control. How can I do this? So I go in with, you know, I would like to see it down a certain number of points each time I would love for my doctor to be like, Hey, I see you're entering your carbs. I see your, you know, you're not having lows. You're not running high too often. That's my goal. And I've been seeing that and that's what motivates me every time I go to the endocrinologist where I don't dread going. It's like a an exciting visit for me. So you'd like
Scott Benner 1:19:30
to set a goal for yourself and then for someone to acknowledge it to give you kind of that energy to keep going for the next goal.
Speaker 1 1:19:37
Yeah, I feel as a type one diabetic for me, and it's just a lot to balance. It's a hard our journey. And so I want someone when I go in, I want to be able to know like, Hey, I see what you're doing. Let's work together to do this. Let's you don't want to be put down like you know you're doing horrible you're doing it's just it's not going to move Ah you because it's your you're already fighting a tough battle. So just having that motivation and acknowledging the goods and also how we can improve. That's what really has been the game changer for me in the past two years.
Scott Benner 1:20:14
Jaylen, I appreciate you spending this time with me. This was terrific. Thank you very much.
Unknown Speaker 1:20:18
Absolutely. Thank you.
Scott Benner 1:20:20
If you enjoy Jalen story, check out Medtronic diabetes.com/juice box. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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#1156 After Dark: Irish Goodbye
Katherine was diagnosed with type 1 at seven years old and felt extremely isolated. WARNING: Self harm is mentioned.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1156 of the Juicebox Podcast
Welcome back this is another episode in the after dark series Kate was diagnosed with type one diabetes when she was seven. She is now 38. In my notes to myself, I described Kate's parents as unpleasant. You're going to hear all about it. Kate felt isolated as a child she suffered from depression and there is much more to her story. There's also mentions of self harm, so please be aware. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink ag one.com/juice box type one diabetes research needs you t one D exchange.org/juice box US residents only you can be a type one or the caregiver of one. The survey will take you about 10 minutes you're very much going to help people with type one diabetes likely going to help yourself and definitely going to help me t one D exchange.org/juicebox. Go take that survey please this episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/juicebox. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us MIT. This episode of The Juicebox Podcast is sponsored by the ever since CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're high or low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out
Kate 2:37
I am kit. I am from Northern Ireland and I have been diabetic for 31 and a half years give or take.
Scott Benner 2:46
How old are you? Okay.
Kate 2:49
I want you to mine. I'm 31.
Scott Benner 2:52
Well, so you were just seven? Well, you were diagnosed. I was Wow. That's crazy. That's a long time ago to in the 90s
Kate 2:58
is a long time. Yeah. 92.
Scott Benner 3:02
I'm just going to put this in here for everybody listening. Kate is in Northern Ireland. I am in New Jersey. And we're having the tiniest bit of gap in when we're talking. So we're going to try not to talk over each other. But if you hear that once in a while we're doing our best. Ireland needs better internet. I don't know.
Kate 3:21
I mean, it does.
Scott Benner 3:22
Okay, that's a fair statement. Okay, so what do you remember about being diagnosed at seven?
Kate 3:29
It seems like there was some sort of magic going on. The word diabetes cropped up about 40 times that day, like we turned the radio on, and it was saying diabetes or diabetic disease, things like this. My parents are both medical. My mom actually worked in the Children's Hospital, not in any way related to diabetes. So I think we caught my transition very early.
Scott Benner 3:57
Okay, so you're have family members, your parents who are in the medical field, and you're just hearing ads and stuff like that the word diabetes is coming up a lot that day. But were you having any symptoms.
Kate 4:11
I had a couple of weeks of very rapid weight loss. My parents really struggled to get any kind of fluids into me and I had drunk like seven glasses of orange juice with breakfast and asked for water three or four times in the day and like that's definitely not right. And I had thrown it thrown up in my sleep a couple of times. Well, that's fun. So they knew something was definitely not correct. And my mom took a urine sample into the hospital and just left it on the counter for one of the doctors to walk past and someone walked fast and lifted it and whose is that? They need to come in immediately. What was that? That's case. So we were rushed down to the hospital. It was about it. I think it was eight o'clock on a Thursday night. To be introduced to doctors and nurses that my mother knew personally, but that I didn't know and have my blood sugar tick, and my blood sugar was 43. Which I'm not entirely sure what that is, in fact, I'm not entirely sure the conversion chart that I have goes up. But Hi,
Scott Benner 5:22
I have let's see, I have a great conversion chart on the podcast website, which somebody from the one of the listeners made, and it's actually really terrific. I'm gonna look real quick for you. 774 I have it as that's a pretty big number. Yeah, so So your mom just kind of like used?
Kate 5:43
I was quite belligerent.
Scott Benner 5:47
You were belligerent as a child, because your budget was so high.
Kate 5:51
What will go with that?
Scott Benner 5:56
Sure, why not? So your mom uses her ends at the hospital to get your your urine looked at? I'm assuming they take you in how long? Were you at the hospital? Do you remember any of that?
Kate 6:05
I think I was in for a week. And I probably didn't need to be there that long. But it was a week before I would let anyone else inject me. I took my own injection from like the morning after I was admitted. And wouldn't let anyone else near me with a needle for a week. So they couldn't let me go home until at least one of my parents had given me an injection. So that was a week later. That's there's a cat in this room somewhere.
Scott Benner 6:39
I mean, is it your cat? Well, I mean, I guess that's fine. That the way you just turned around, I was like, there's the cat. She doesn't expect the in the room all of a sudden. Is there any other type one in your family on your mom or dad's side?
Kate 6:53
I have a second cousin on my mom's side. So my mom's cousin's daughter is a type one. And we have a number of type twos. My mum had as arthritis. So I'm not sure if it's the type that would be relevant.
Scott Benner 7:15
Without Hashimotos celiac? No
Kate 7:18
Hashimotos or celiac. My mom definitely has an underactive thyroid. Okay. And other than that, not that much anything that I'm aware of,
Scott Benner 7:29
is your mom take medication for the thyroid? She does. Yeah. Okay. All right. Well, what was it like growing up in Ireland with diabetes?
Kate 7:41
When I was diagnosed, it was, it seemed to be not common. I have never really known very many other people with type one. I did go to like a children's summer camp for diabetics twice. When I was little, I think when I was eight, and when I was either nine or 10. And then, as far as I'm aware of those camps stopped running, because the person who was instrumental in running them was assassinated by the IRA. You don't hear that every day. We're Excellent. Sorry. I have. It does seem ridiculous and even seems ridiculous to us. Because it's like, it's been a long time. I'm from the troubles were the troubles
Scott Benner 8:29
Catherine their murder had nothing to do with diabetes, I assume? No,
Kate 8:33
no. Okay. It was to do with it has to do with his day job. That's, that's crazy, which, you know, was, was not in any way related to any kind of sectarian goings on. He just worked for the wrong company.
Scott Benner 8:51
So for all of you who don't like living in America, you could live in Ireland where you'll get shot for reasons I don't know. And your internet, it's gonna suck.
Kate 9:00
I have. I have family who grew up in Saudi Arabia who were scared to come and visit us here. So
Scott Benner 9:10
listen, I'm making assertions. And the only thing I used to know about Irish and something else is I hear I'll tell you something. I met my wife. And then I met her family. And I noted that her sister would leave a gathering. I always teased it was like the Lone Ranger. Like she was there one second, and then she was just gone. But I've been told since then, it's called the Irish goodbye. Just is that. Is that a real thing? Have you ever heard that?
Kate 9:44
I have heard that. But I don't think it's like a common usage.
Scott Benner 9:49
I don't think it's one thing a lot of people say. They don't say goodbye. They just boom, they're gone. Right? Yeah, you're diagnosed at seven And, you know, you come home. Now you're gonna grow up with diabetes. Tell me about that a little bit. This episode of The Juicebox Podcast is sponsored by the only CGM you can take off to get into the shower. The ever since CGM ever since cgm.com/juicebox. Well, I mean sure you could take the other ones off, but then you'd waste the sensor and have to start over again. But not with ever since ever since is a six month where implantable CGM. So if you want to take a shower without anything hanging on, you pop off the transmitter, jump in the shower, when you get back out, put it back on, and you're right back to where you started. Come to think of it. You could do that whenever you wanted to. Maybe it was your prom night or your wedding day. Maybe you just don't want the thing on for a little while. But you don't want to go through the hassle of taking it off and having to restart it and you know, starting back over with like wonky numbers and having you know all that that goes with it when you take off a CGM and put it back on Oh, but you don't have to do that with the Eversense CGM. Because ever since is the only long term CGM with six months of real time glucose readings. This gives you more confidence, more convenience and flexibility. The Eversense CGM is there for you when you want discretion, a break. Or maybe just a little adult time ever since cgm.com/juicebox. Podcast transmitter off, pop it back on you're right back where you started without any wasted devices, or time. I'm starting to take it for granted. I am I'm starting to take for granted that Ardens diabetes supplies just show up. But they do because of us med us med.com/juice box we get an email that says you know do you want to refill your order? And you click and say yes. And then it just comes to the door? There's not a lot to say when things are done well yeah, I could stand here and tell you us med carries Omnipod five Omnipod dash Dexcom g7 G six tandem x two libre three libre two I mean, they've got there's so much I'm not even listening at all. I should be I will at the end. I promise. My point is this. It just works. And we don't talk about things enough when they just work us med.com/juice box or call 888-721-1514 Get your free benefits check and get started today with the white glove treatment offered by us med us med here's what they got. FreeStyle Libre three and two. They got it. Omni pod dash Yes. Omni pod five, aha. Tandem. Yep. What about have they served a million people with diabetes since 1996. They have better service and better care is what you're going to get from us med but you're also going to get 90 days worth of supplies, and fast and free shipping. They carry everything from insulin pumps to diabetes testing supplies, the latest CGM, and they accept Medicare nationwide. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or call 888721151 For contour next one.com/juice box that's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters. I'll click on the Next Gen. And you're going to get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough. The contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this download a coupon? Oh, receive a free Contour. Next One blood glucose meter. Do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use.
Kate 14:31
Both my parents were fairly career driven so they weren't around most of the time. And I spent most of my time with older people, grandparent, an aunt and uncle and I don't have any family members really close to my age. And I was the only the only diabetic I knew. I have the second cousin on my mom's side who is also a type one but I think I've met her twice. They don't live far away, but it's far enough away that I've been presented with a coffee. Oh, me.
Scott Benner 15:10
What just happened? But
Kate 15:13
my husband thinks he's funny. Oh,
Scott Benner 15:15
you should look for a different husband
Kate 15:21
claiming to be kept prisoner?
Scott Benner 15:25
Listen, I'm also claiming that for anybody who's listening, somebody can come get me. I think I'm being kept by, against my will to. Okay, so nobody's around you even the people you know are far away, you don't or aren't far away, but you don't see them very frequently. does that leave you feeling isolated?
Kate 15:44
It does quite a bit. And of the people that I knew of my own age, they only knew of diabetes from like, older relatives who have diabetes, or pets who had diabetes, I have been subjected to that I know exactly what you're going through because my dog has diabetes. Oh, concrete.
Scott Benner 16:08
Exactly the same. How do you respond to that?
Kate 16:12
Usually, you're smiling and nodding situation. You come across this conversation at times where someone is saying, Oh, I used to have type two diabetes, but now it's type one, because they've put me on insulin. And you're like, you have it and you don't even understand what it is very
Scott Benner 16:28
common. Katherine, the next time someone says to you, any of you can use this. I know how you feel my dog has diabetes, you can say, Oh, I work for Sal, I know how your dog feels like. They can follow that along quickly enough. I'm sure you can slip it in, no one would even notice. So does that isolation lead to anything because you have a list here of things to talk about that goes through mental health, self harming complications, you know, and I'm wondering what led you in that direction,
Kate 16:58
I feel I didn't really feel like I had anyone to talk to about it. For whatever reason, I felt that it would be better if I had, what I was going through emotionally, as much as possible if I had what I was going through physically. So I would pretend to have recovered from a hypo, before I had really recovered from a Hypo. Or I got very good at hiding symptoms of high blood sugars and low blood sugars, I would avoid taking my blood sugar as often as possible. Because there was quite a lot of guilt attached to any blood sugar that wasn't perfectly within normal range. Like you would possibly a sign of the times, because it's 30 years ago. But if it was not within normal range, it would be because I had done something wrong. Or I wasn't managing it properly. I wasn't looking after my diabetes properly. So I just avoided sharing what my blood sugar was as much as possible. Okay. And I was a very limited, I'm very much a people person, I was very little child. So when I got the opportunity to go to boarding school I left. So I stopped living at home with my parents when I was 11, which I can't imagine a lot of diabetics get an opportunity to do. My mom had to give a lecture to all the boarding school staff, and then electorate, all the teachers at the school so that I could go and be in boarding and then I would only come home at the weekends. So I had a lot more freedom to miss manage my diabetes.
Scott Benner 18:42
So that was what I was going to ask you did you use that freedom to take excellent care of yourself, or to ignore it further?
Kate 18:49
I would say initially, I was quite strict with myself about managing it. For the first years when I was in like a mixed dorm, they kept my insulin in a locked cupboard in sickbay. And I had to have a member of staff go with me to get my insulin out and take my insulin, which I find like the grossest invasion of all, some member of staff would be coming into your room going, are you ready to come with me? Please.
Scott Benner 19:21
Now, I can't do this by myself. But you're 11 though. So that really that really caters The interesting thing because elevens too young, you've only had it for three or four years. You're not doing well to begin with. It's not like it's not like at home. Everything was going terrific. So now you're taking the did
Kate 19:37
your parents, I would set my HPA once he was probably pretty good. At that stage. I had a bit of a wobble when I came to the end of my honeymoon periods. And it took us a little while to work out that oh, she literally just needs more insulin. That's what this is because I couldn't understand why it was suddenly high all the time. My diet was very strictly regimented. I did I started off as a diabetic at the time when it was like, Well, you take this much insulin at this time, and you eat this much. Yeah, no matter what's going on, if you're at a birthday party, you can still only eat this much. If you feel sick, and you don't want to eat, you still have to eat this much needed at that time. And it doesn't matter what time the party is, at that time, you have to eat off you go, Oh, it was very strictly controlled. And a lot of high, I manage day to day was about finding a way to be at a certain place at a certain time, because that's when I needed to take my insulin, okay, and that I needed to
Scott Benner 20:35
eat. So you would consider from seven to 11, well controlled with your mom's help, or were you doing it on your own. With
Kate 20:42
mom's help? Well control, I would have been more or less counting my carbs by myself from that period on. And as my parents were at work all day. So I would have been kind to my own carbs through the day as well. I got quite, because you were so restricted in what you were allowed to eat, it wasn't as difficult as it would be, I feel naive for a child trying to count a different amount of carbohydrate every day and try and work out a dose or program, a pump. To give the right amount of insulin, you were just like, well, you know, if you're really stuck up for digestive biscuits, and that's exactly the right amount of carbohydrate.
Scott Benner 21:31
And so when you do, can you look back and say, Were you set up for failure leaving? Did you really know what you were doing on your own? No,
Kate 21:41
but there was less to know, because you weren't adjusting your doses, you were just taking the same amount every day at the same time. And if it went wrong, it was either because you had exercised shortly after taking insulin, or you had eaten too much or too little. And
Scott Benner 22:02
so as much as there was not a lot of, there wasn't really a lot of a lot to do for you. But you still didn't do it. When you got there like or you did it. And then it kind of waned as you were there.
Kate 22:15
When it wind over, like over puberty. And shortly thereafter when I was like in my annoying teens, it became a kind of rebellion. Alright, it's like, well, I hit my diabetes, so I'm not going to give it any attention. Okay,
Scott Benner 22:33
when did you start having complications?
Kate 22:37
I do have slow digestion. And I have had it described as nerve damage. But I know I had symptoms of that at 13. So I don't know how accurate it is to describe that as a complication, I would say my mid 20s, I started to have issues with my eyes, I got a bad result of routine diabetes eye screening, which we get basically forced to go to once a year in the UK, so that would be arranged. And you'll just be sent a letter go to the screening. And I got a bad result of one of those. And it happened to me around about the time. My ex partner and I were looking to get ready to move from Northern Ireland back to England, which is where he's from. And I had discharged myself from the hospital, and then we decided we weren't going they wouldn't take me back.
Scott Benner 23:43
They wouldn't take you back told me about that. It became
Kate 23:49
it became a whole ordeal. And took, I think a year and a half until eventually I had to just go back to the routine ice screening to get put back on the list to see the specialist about my retinopathy. Because they couldn't put me back into a list after removing me from it. There was a lot of faffing about and then we were back to the bottom of the list. Okay. From I did eventually get back into it. It's not a macular problem, but it is the macular clinic that I attend. I'm usually the youngest person there by about 30 years. I've had six lots of laser surgery to correct the retinopathy. The first surgery didn't go very well because I am extremely photo phobic. And if I look at a bright light, my eyes just clump shut. So the first thought of surgery did not go well at all. And every time thereafter I have had a local anesthetic for the laser surgery which I would not recommend.
Scott Benner 24:50
That's just to keep you a little dopey so you can't close your eyes. It's to
Kate 24:54
numb the nerves for your eye. So you do go to Line temporarily while your eyes and asymptotic G's rich. They're very poor at explaining things to patients here on like aftercare kind of brushed over. So the first thing that they'll ask you to do is to hold your eyes still while they put a needle up your tear duct. Okay, which is not great fun.
Scott Benner 25:25
Okay, I feel like I just got kicked in the balls in case you're wondering how it's going over here. Really? Jesus, very unpleasant.
Kate 25:38
Doctor said follow me and left the room. And I got about three steps that I can't see. And then you have this momentary panic? Oh, maybe I'm supposed to be able to see and something's gone horribly wrong here. I can you help me? Kate,
Scott Benner 25:57
I wouldn't let anybody stick a needle in my eye in a country that couldn't figure out the internet. What do you think of that?
Kate 26:07
What's the alternative?
Scott Benner 26:08
I don't know. I have no idea. What country is to your left?
Kate 26:16
It does become your you're on your own? Yeah. You kind of have to just pick a person to trust doing the things that you can't do yourself. And aside from that you're on your own. Yeah, I feel that. You can't necessarily. Definitely not going to mention any of them. So you can't necessarily just trust what you're told at the diabetic clinic? Because they're going to tell you to eat
Scott Benner 26:41
loads of carbs. Yeah. And I'll tell you how to use your insulin. No,
Kate 26:47
not if you're concerned about your weight, and I'm particularly interested in your weight. They're only concerned about your blood sugar beet staple. There is absolutely no hope in hell, my blood sugar would be stable, no matter what I was doing. If I was eating the amount of carbohydrate recommended. Yeah, that became even more ludicrous. While I was pregnant. Where I was told by one dietitian, I should be eating 270 grams of carbohydrate a day for the baby. Like while I was pregnant, but obviously keeping my blood sugar under eight.
Scott Benner 27:24
Okay, 201 270 270
Kate 27:28
grams.
Scott Benner 27:32
I mean, this is just the Google. But how many carbs? Should a pregnant woman eat a day? Institute of Medicine recommends 175 grams of carbs intake during pregnancy. However, many women are consuming lower carbohydrate diets within pregnancy, improving for glycemic control. Yeah, I mean, I don't think 200 Like it's not a rule. That's for sure. Not I mean,
Kate 27:54
I think I put the phone down on her. And just putting in by Tom to see what it says. So to Bolus for that I would need 45 units of insulin. Yeah. And,
Scott Benner 28:07
yeah, I mean, just in general, like I don't understand eating more than you need. I understand eating what you need, etc. But, I mean, that's not like, here's my point, if somebody said to you eat 200 grams of carbs even. But here's where I want you to get them get this much from vegetables, get this much from here get that's, you know, maybe, okay, whatever. But when you just give people a number, they're not nutritionists, they're just gonna start looking at things and eating whatever they have until they get to the number. It's just it's an incomplete way of making your point is what what I find upsetting. They
Kate 28:42
seem to be very concerned with low blood sugar during pregnancy. And I have not heard an explanation as to why not that I was attempting to set with my blood sugar at 3.5 throughout my pregnancy. But if if my Libra was reading 4.5, then a blood test probably would have been five, I was not concerned about a blood sugar 4.5 for blood sugar. 4.5 is normal. For a normal person. They were freaking out.
Scott Benner 29:22
Yeah, I mean, a 4.5 is 81. Yeah, that seems reasonable. It's very low, I would think. I don't know. I just think nobody knows what they're talking about, generally speaking, and it's fun to know that it exists in other countries as well, not just in America. I
Kate 29:37
think it is a very dangerous thing. Because I have one or two people. I wouldn't necessarily call them friends. There are one or two people that I know vaguely, because I happen to get my pump on the same day and we were in the same class learning how to use our Medtronic pumps. And one of the girls Girls that was in the class at the same day as me had recently had her first baby. And I when I fell pregnant, I had texted her and said, How did you keep your blood sugar under control, particularly after meals with the amount of carbohydrate? They're asking us to eat? And she replied and said, I just did a low carb diet and lied to the hospital.
Scott Benner 30:21
Oh, there you go. Perfect. Yeah, that's what you want. That's where the advice was leading her. You know, she's like, I can't do this. And I can't argue with them. So I'll just do my own thing and not tell anybody. Yeah. Okay. All right. So the baby came out. Okay.
Kate 30:38
Her baby did. Yes. We, we lost our baby, actually a year ago today.
Scott Benner 30:43
Oh, my gosh, wait, I'm sorry. Okay, so this is during the pregnancy.
Kate 30:49
During the pregnancy, I had contacted her for advice, because I think I have my certainly for the earlier part of the day, from getting up in the morning until about three in the afternoon. I had my pump on 200% or more of my normal daily dosage to try and keep it at a reasonable level. And I was eating very little carbohydrate.
Scott Benner 31:11
What did they tell you what they thought happened to the baby? They
Kate 31:15
did do some investigation afterwards, but they weren't able to find anything conclusive.
Scott Benner 31:20
How far along? How far along? Were you?
Kate 31:22
We were 12 weeks.
Scott Benner 31:24
I'm sorry. Do you? Was that your first try? It was our first try. Do you think you'll try again?
Kate 31:33
I think we're just about to get into that this night, where we'd be ready to try again. But you know, we're both a little bit older for first time parents. Yeah, I'm a little wary of needing any kind of assistance, because I'm almost at the age in this country where they wouldn't allow you to have assistance unless you were going to pay for it privately. I think 42 is the cut off? What kind of assistance IVF treatment?
Scott Benner 32:05
Did you have trouble getting pregnant? The first time were you trying for a while? Not at all? Your poor husband.
Kate 32:15
We got married last year on the fourth of May. Because we're nerds. I think I started my period two days later, which would have been the sixth of May. And on the 17th of June, we had a positive pregnancy test. Wow. Quick work and all seem to line up very nicely. My diabetic anniversary was alright you did. I was pregnant at the same time as my cousin. And very strong pregnancy symptoms. Everything seemed to be going extremely well. But a private scam because the shifts My husband works on he was never going to be able to come to the hospital with me. So we had booked a private scan so that he will be able to see and then we went to the scan. There was nobody in there.
Scott Benner 33:03
That was it. Just like that. Yep. Oh my gosh, that's terrible. I'm sorry. needed
Kate 33:09
quite a lot of assistance to end the pregnancy then which took from ours down. Just look at my diary. are scams on the 20th of August. And the 29th of August, which was the was a bank holiday Monday last year, which was a year ago today. We were in the hospital having surgical intervention.
Scott Benner 33:37
Nine days before the procedure. Yeah.
Kate 33:42
I was frantically emailing the hospital. But our scam was on a Saturday. And Sunday I was frantically emailing the hospital. I was supposed to have an appointment, which they call the booking appointment here and a scam on the Tuesday following the scam where we find out the baby wasn't there anymore. And asking was I still expected to come to this appointment on the Tuesday did they want I really did not want to be in the hospital surrounded by heavily pregnant women. I really didn't want to have to do it. Yeah.
Scott Benner 34:17
No. I mean, I can't imagine what I understand.
Kate 34:22
Or is there a different appointment I should come to and they told me to come the following day, which was the Wednesday and I could bring someone with me probably was working so I took my mum. And it's always good to have a second pair of ears when you're in shock. And they give me hormone suppressants that day. And then tablets to take which I took on the Friday and I'd arranged to just be off work and spend the day with my parents on the Friday when I took the tablets and things started to happen. Mainly a lot of pain started to happen on the Friday, and just got worse and worse as the day progressed, and nothing else seemed to be happening. And the following day, the pen continued and nothing else seemed to be happening. On the Sunday, we had a family barbecue planned because we were, we had initially planned to tell the whole family we were pregnant at this barbecue. My cousin had just had her baby. And it was his first, I think, to meet the family. Time and it's like a Greek tragedy. So I have my cousin texted me saying, Do you want us to not come? And I'm like, no, please, I'm like, I need something happy, please come, please come and please bring the baby. And you know, we will let on to family what had happened. And just carried on with the barbecue. And every now and again, I had to go and sort of put my elbows in the sink and close my eyes and go, Oh, this is painful. And at some point, the hospital rang to say, well, is everything for rest, as it sure did everything over like No, not at all. No, we're
Scott Benner 36:15
just at a barbecue. Everything's everything's the same. Thanks for asking. How did you deal with all this? Because in your notes, you talking also about? I mean, like I said earlier, like you wanted to talk about mental health and self harm, like how do you? Is that a thing you've left in the past? Is that something you're dealing with now? And if so, how does it intertwined with all this?
Kate 36:34
I wouldn't say it's entirely my mental health problems are entirely gone. But I am in such a better place. And I have an excellent support system, my husband, who was claiming to be kept here against as well. It's amazing. Certainly in comparison to anything I have had before. He is willing to do things that I would never have asked another person to do. He has my blood sugars coming through on his phone. He's checking up on me, he's reading things. He knows what's going on. And that may not sound like something that you wouldn't expect from a partner, but it's not something that I've had before. Okay. And I think particularly in a relationship that you're starting later, I mean, dating in your mid 30s. Isn't? I wouldn't recommend it. The last time I was dating, there were no smartphones.
Scott Benner 37:40
Oh, you were with somebody for a long time before recently. 15 year? Oh, my gosh, where are you married?
Kate 37:48
We're married just over a year. We were married for somebody last year. To the previous partner. No, no,
Scott Benner 37:54
the previous partner? No. Okay. But you were together for that long.
Kate 37:57
We were together from university. Wow. That's
Scott Benner 38:01
interesting. And was that an unexpected breakup?
Kate 38:04
It was unexpected to me. Not to him. No, no, not to him.
Scott Benner 38:11
Is the Irish Did you just leave and not say anything?
Kate 38:14
No, he didn't. He from Yorkshire. In England, he, he actually moved here with me. In what 2009 I had lost both my grandparents on my mom's side in quick succession and decided I needed to be home for a while. And we agreed that we would move back here for a year. And then he got a really good job. And we just stayed. And we were here for a long time. He owns property here.
Scott Benner 38:47
I don't need a ton of details. But I was just wondering like it just like it ended abruptly for you. And I didn't
Kate 38:55
know no one was saying about Greek tragedies. My diabetes has been poorly controlled. I have put a lot of work into getting it back to a reasonable place. I would still like to improve my control. But I would say it's at a reasonable place. When I go into the diabetic clinic, they're more interested in telling me it's the best graph they've seen today than improving. Were my controls out at the moment. But I spent I want to say six seven years attending the free pregnancy clinic or hospital trying to get my my diabetes control to a place where they were going to give me permission to try and get pregnant and the morning that they have my appointment and they told me I could get pregnant whenever I wanted was the morning that we broke up.
Scott Benner 39:52
Oh perfect. After seven years of trying what were your blood sugar's outcomes a once he's like Prior to going to that class and getting yourself down and what helped you get to a place where you could get pregnant? To
Kate 40:07
be honest, a lot of it was the Juicebox. Podcast. It's worse my HB one C was 13.9, which is 120. I believe.
Scott Benner 40:22
Are you looking? Yeah, okay, I was gonna say I can't tell when I lose you or when you're doing a one C? Of what a one C of what? Mine?
Kate 40:34
It was 13.9. I think that's 128.
Scott Benner 40:39
Well, 13.9 is an average blood sugar of 352. Or an average blood sugar for you of 19.6. Does that sound about where you are?
Kate 40:53
I want to say yes, but it would have required me to be testing it more often.
Scott Benner 40:59
So you wouldn't have known to begin with so you're not testing, you're not using enough insulin, you don't functionally understand what you're doing. You're with this guy, you decide you want to have a baby, you go to the clinic, where they're going to help you get blood sugar's like, quote unquote, where you need to be for for pregnancy. But that takes six or seven years to accomplish. When you accomplish it. That guy leaves. And but you didn't accomplish it really through the classes. You found the podcast, when did you find the podcast? When did the podcast start? 2015
Kate 41:32
I don't think it was maybe 2016.
Scott Benner 41:37
So you're listening, but you're still not completely focused on your management, or it took you that long to get it together. Oh,
Kate 41:45
it took me that long. Okay. I completely avoided talking to my parents about my diabetes control for years. And I remember coming out of the hospital and ringing them to tell them that my HPA once he was in single figures, because it was 9.9.
Scott Benner 42:02
And everybody was like way to go
Kate 42:04
mentally. And they were horrified. And I got my first I was given my first Libra sensor, like a drug dealer would give you a free sample of something. Here, try this FreeStyle Libre sensor that will track your blood sugars. And I think I'd had it on. I think I got it on a Thursday, and I had it on Thursday night Friday. And on Saturday, I went for a run. And then for a swim and it fell off. And I already knew I couldn't do without it from having it on for 40. At
Scott Benner 42:41
work, they hooked your quick. Yeah.
Kate 42:45
At that time, it wasn't available on the NHS. So I self funded that for two years. And I get it on prescription.
Scott Benner 42:54
Is that something you could have afforded? Or it was just it meant enough to you that you made adjustments to your finances? If
Kate 43:01
it meant enough that I made adjustments? I didn't really have any money to do anything else? Gotcha. So it was a bite, where they were 50 Ponds around 50 ponds, and they last for two weeks. So just over 100 pounds a month. And I was I was earning minimum wage at the time. So it was a considerable portion of had to cut out a lot of things to be able to afford it. But I
Scott Benner 43:29
have 100 pounds as about 126 American dollars for people understand what interested okay, there's no doubt how valuable that information is. So if so, is it really the podcast? Or was it just being able to see your blood sugar that helped you and
Kate 43:43
same as being able to see my blood sugar definitely helped. But I'd already made a lot of progress. Oh, from listening to the podcast and you know, kind of getting a grip on myself and testing my blood sugar again. When my HPA once he was 13.9. I was also referred to the clinical psychologist, which was immensely helpful. And I still see the clinical psychologist, I certainly don't see them on any kind of a regular basis. I have you because it's a chronic illness clinic you will not be discharged from it. But I am no longer given sheduled appointments. I will just contact them if I need to talk about something but
Scott Benner 44:31
speaking speaking to that psychologist helped you to what what were you not? What was not happening that was happening after you had those conversations? I
Kate 44:45
had depression and generalized anxiety. Okay, he level my HB one C was at has been referred to as suicidal by a number of clinical professionals. To me and And
Scott Benner 45:00
did it feel that way to you, Catherine, did you feel like you were trying to hurt yourself?
Kate 45:03
I certainly was having a lot of thoughts about life not being worth living. Okay? Because I think I was 30 I turned 30. And I was driving to work. And thinking about what my options were a finding a way that I could work from home, because I didn't think I was going to be physically able to continue going to work every day, because my health was so bad. I have been diagnosed with nephropathy around the same time, and I was on a number of medications to combat the nephropathy and my high blood pressure, which at one point was something like 270, over 180 G's
Scott Benner 45:52
really,
Kate 45:54
I thought I was gonna have a stroke. Yeah. And so one of the medications that they gave me to combat, I had really horrific reactions to I had fairly bad edema. I couldn't breathe. I was having fainting and dizzy spells, I had cysts in my joints, it was pretty grim. And they just kept bringing me back for blood tests, which were inconclusive. And it wasn't. We went on a holiday to stay in which I was in so much pain, I could hardly walk. And that week, we were in Spain. And the Spanish healthcare system is excellent. And my parents took me down to like the local clinic and their local time, and I had like a full speck of bloods done. And we went and got the results the next day, and the Spanish doctor came out to me with the page and pointed to the medication on my list of things I was taking and said, There is your problem.
Scott Benner 46:55
You're just taking so many so many different medications. And
Kate 46:59
it was that one in particular is apparently known for Oh, having quite a nasty spectrum of side effects. I stopped taking it and those symptoms had gone away within two weeks.
Scott Benner 47:13
Jesus really how long were they going on for? I
Kate 47:17
was taking it for a year. And prior to that I've been taking a different one, which was an ACE inhibitor, which gave me a cough like croup, okay? I just I happened to cough in front of the kidney specialist one day and it was off, if that's making you cough like that, you'll have to come off it. This is after having, I don't know three courses of antibiotics from my GP to deal with this cough that won't go away because currently they don't read your chart.
Scott Benner 47:42
So So okay, so the therapy helps with the feelings about life not being worth living, and you get some better health care and get off of medication that's hurting you. You're listening to the podcast and trying to make adjustments. It sounds like you were moving through quicksand. Like but but making progress just slow progress, which is
Kate 48:04
Is that about right? It's been progress over years. Yeah, it's taken years I do have a list of complications, but they're all stable Not at the moment. I have been to the eye specialist within the last month the back of my eyes are stable. There are no changes. There are no new vans, I have a lot of scar tissue. and a high blood pressure event has caused bleeds in the past. But it's been two years since the last one of those everything is nicely stable. She be English isn't her first. And she has this odd turn of phrase because they they send me to her from the pre Pregnancy Clinic. Just they are to see if my eyes are stable before we try getting pregnant. And she says it's okay for us to start practicing.
Scott Benner 49:10
But does that mean you don't know finish within 10 Is that thing
Kate 49:16
about stable? I own the the kidney specialist once a year and I for a checkup unless my meds need tweaking. So my blood pressure is perfect. My protein leakage is well under control. My kidney function is over 60% Which is where they stop measuring. considered normal if it's over 30
Scott Benner 49:44
Well good for you. Do you feel like a weight lifted?
Kate 49:46
The last year since we lost the pregnancy has been quite difficult. And I put on a lot of weight between getting pregnant and no And I think a lot of that has been to do with the amount of insulin that I had to take to keep my blood sugar. Stable. Yeah. So over twice what I was normally taking. And it's been kind of difficult to get in control of
Scott Benner 50:21
that. Also, were you, were you really going for the 270 carbs thing while you're pregnant? You weren't doing that. Okay. Yeah, that would have been crazy. The amount of insulin you would have needed then would have been insane.
Kate 50:37
I feel guilty about using a lot of insulin. I mean, we don't, I don't have to pay for my medication here. But that's not true for everyone. I feel guilty about using a lot of insulin.
Scott Benner 50:52
Okay, I hope you can find a way not to feel guilty about that. That's just you're just using the amount you needed. Not a thing you should feel guilty about. Why do you feel guilty about that?
Kate 51:01
It feels wasteful. Really. We've had some supply problems here recently. And like, since Brexit, I have been stockpiling insulin, like not to a ludicrous degree, but I'll have like three or four files in the fridge more than I technically need. Oh, my God, am I glad that I did that. There's been a period of a couple of months where they're just like, oh, we just can't get that. There isn't any.
Scott Benner 51:30
I have to say I, I would feel guilty about that. I think I think that you should use what you need to use. Just enough to feel bad about life. Don't feel bad about that. You know? Okay, so let's see what we have here. Let me ask you, if there's anything we haven't gotten to that you definitely want to talk about? I don't think so. We're doing okay.
Kate 51:56
We're done. Okay.
Scott Benner 51:59
What about the podcast helped you was that because I've heard some people say I knew what to do. You didn't tell me like how to manage. It was I felt like connected to diabetes by listening every day and hearing other people's stories that made me want to do a better job. So did you not know what you were doing? Or were you just not doing it? In
Kate 52:20
Part, I didn't know what I was doing. I learned about Pre-Bolus thing through the podcast. I have since had Pre-Bolus thing mentioned to me through the clinic. But like within the last four years, okay, people this thing has been mentioned, for the first time to me through the clinic, they sent me on a Daphne course, which is the dose adjustment for normal eating course, I think made a huge difference because it was probably the I probably hadn't had any refresher about counting carbs. Since I was eight years old.
Scott Benner 52:58
Oh my god. Can I ask you a difficult question, Kate? Sure. What's with your parents.
Kate 53:07
They were busy all the time. And I'm a control freak.
Scott Benner 53:11
So they weren't trying to help. And if they did try to help you push them away.
Kate 53:15
When I was diagnosed, we were told 40 grams of carbohydrate for a man meal, and 20 grams for a snack. And I was seven years old, but my mother would be quite keen for me to continue working on those ratios. Now as an adult. If I see my mother and she doesn't mention my wit, I would be wondering what was wrong with her? So
Scott Benner 53:43
is it? Is it just that her style doesn't match well with how you need to be spoken to?
Kate 53:50
Maybe? I mean, I don't think she should speak to anyone. So I
Scott Benner 53:54
know I'm just saying I'm trying to trying to be polite, but okay, so they weren't helping you
Kate 54:02
with parents of a certain age thing. Are they older? They were in their 30s When they had me and I'm nearly 40 So they're around 70 know, my mum, parents were a lot older. My grandfather was born in 1910.
Scott Benner 54:20
Is it how direct is it? Is it okay? You're fat? Or is it some it's pretty direct? Okay. I was gonna try to give you a spectrum. She was out of
Kate 54:34
the ex boyfriend. The first time I ever brought him home from England to meet my parents. My father met us off the plane and greeted me with the phrase you haven't lost any weight. Have you? My ex boyfriend looked at me when he's brave
Scott Benner 54:53
Oh, my sorry. I don't know why I'm laughing that just it's there. That's that's what got me is the idea of like there She is right there with her boyfriend who we've never met before. And you know what I'll do? Yeah, that's terrible. Sorry. That sucks. I don't know why you were depressed.
Kate 55:14
Okay, so I think like a lot of what helped me was, without that realization that you were on your own with it, so you kind of better get on it. You know, there's no point in waiting for it to get better. If you want it to get better, you're gonna have to make it better. And actually making it better is not as complicated as it may seem. No
Scott Benner 55:37
know. I mean, listen, if I can talk about it, and it makes sense that it's got to be pretty uncomplicated, because I'm pretty much an idiot. But what I'm seeing here is, I can't believe that I've come to believe this. But I've talked to enough people, you have a very common story. Diagnosed at a certain age, you know, there weren't a lot of expectations. So managing diabetes seemed kind of easy, because nobody was really tracking it that much, and there wasn't that much to do. And then you get a little older, you don't really know what you're doing. But in your parents mind, you're like, Whoa, she takes care of it. So that moves on you head out of the house, you get older, you ignore it, at some point, you decide you want to have a baby, this is really a common like, story for women, you decide you want to have a baby, you start looking hard at your health, and you go, Oh, God, this is nowhere near me having a baby. And then you make steps towards either getting that together or give up. That's really how I see it go. Yeah, those are your options. Yeah. And so you know, you can go backwards in the, here's the kindness, you come on and tell the story so that people whose children are now eight and 11, and 15 and 18. And hear this and think we could get ahead of this. And this doesn't have to be my kids story. That's why I like having the conversations, because I hope they're spurring other people into doing it. Or I'm hoping like a, like a 20 year old girl at college hears this and says, You know what, why don't I not wait the six years to decide I want to have a baby to take care of myself? Why am I starting now? So my eyes don't bleed. So I don't feel I don't find out what it's like to get a needle in my tear doc, and or whatever else is coming here. And we also haven't really talked Kate about high blood sugars could absolutely make you feel like you're depressed. Or it could give you mental instability. You don't I mean, like you could be
Kate 57:33
an angry angry person. Right? And but
Scott Benner 57:36
people don't see that they don't go oh, you know, Kate's blood sugars are really high all the time. They just go she's mad, or she's angry like you, you don't realize how many parts of your life it's going to touch in ways that like, There's no magical doctor that's just going to look at you and go, Oh, I know what's wrong. Take one of these, turn this dial here eat some of this, Baba, bah, all fixed. Life doesn't work that
Kate 58:00
way. No, unfortunately, magic pills. And
Scott Benner 58:03
variables start layering on top of each other to the point where you can't make sense of them anymore. And again, by example, you're taking a medication for a year, that's decimating you and you don't even realize it. I'm just saying, if you start off well, you have a much better chance of ending Well, yeah, and and that's what to me. That's what your story is about. It's about what happened to you, and you found a reset point. And that's terrific. And you'll move forward from there and everybody else. I hope you find your reset point sooner than that. I also think it's a great example that I don't give a crap how smart your eight or 11 year old is. Really don't put them in charge of their health. I mean, they can be part of it and learning as they go. But you can't just walk away from them and say they have it. I don't know that. I'm not sure I could walk away from Arden at 19. And that she wouldn't be on someone's podcast 10 years from now going, Yeah, you know, he let me go on my own. And the next thing I did was XYZ just like everybody else say,
Kate 59:08
you know, if they hadn't let me go on my own, I might have lost my mind. But oh,
Scott Benner 59:11
you'd be nuts with good blood sugars. Is that what you're saying?
Kate 59:16
In prison for murder. So
Scott Benner 59:19
let's assume that in the conversations we're imagining they're not your mom and dad. Oh my god, I can't imagine where you in the airport when he said it. Were there like people around? Yeah. Surrounded
Kate 59:34
by people.
Scott Benner 59:37
Wow. He didn't read any of the parenting books. I
Kate 59:41
wonder if I can find it because I actually have it on video. My parents were in Spain when we found out we were pregnant last year. And we had the the one photograph that I'd been given at the hospital showing a little, a little bump and I'd put it in the back of the photo album of the wedding photographs. So we were showing those to mom and dad and I just put this the scan photograph in the back. When we were telling them that I had my mom on video to the end of the turning the period and looking at it and staring at it and looking at me and saying, You can't lose any weight. No, I can.
Scott Benner 1:00:22
Is your mom then?
Kate 1:00:24
I would. She's not overweight, but she's constantly on a diet.
Scott Benner 1:00:27
Okay. We all are. So oh my god. Yeah, I don't know what to say. It's terrible.
Kate 1:00:39
Go kind of wish I didn't have that on video. Yeah,
Scott Benner 1:00:43
yes. She didn't go Oh, I'm so happy. I'm so proud of you. I can't wait. What do you think you'll name the baby? None of that. She went Ah, well, she
Kate 1:00:50
was clearly happy and smiling and crying and hugging. But that's what she said. But
Scott Benner 1:00:56
that's what she said. And that's something. I wonder why that is? How is she? 60.
Kate 1:01:01
She's 30 years older than me. So she is 67.
Scott Benner 1:01:05
Tell me when you were born? What year 84? She was born in 5454. Okay. I don't know my mom was born then. She didn't say any. Well, my mom was born actually earlier than that. And she still didn't say that kind of crazy stuff. Me. It's just luck of the draw. Are you like that? Be real honest with me. I mean, I don't think you are okay.
Kate 1:01:31
I am. I am pretty much as non judgmental as they come. I don't have grinds to be judgmental of other people.
Scott Benner 1:01:40
Well, that's self awareness. I don't maybe your parents don't have that. Who knows? It might just be generational to honestly. You know, it sucks. But maybe it's just how they were brought up and how they were raised. And it's how they talk. Maybe they didn't help you. That's for sure. You still talk to them? It is?
Kate 1:01:58
Oh, yes.
Scott Benner 1:01:59
Yeah. Do you really talk? Yes,
Kate 1:02:03
I have put a lot of work into keeping that relationship
Scott Benner 1:02:07
is the work, you're not killing them is that the work?
Kate 1:02:11
Sometimes, I mean, when my my previous relationship fell apart. And I was in the very enviable position where I had assistance in getting a deposit to buy my own place. I moved in here on the first lockdown started, within three months of me moving into a house by myself for the first time ever. And they offered to have me come live with them. You said, I stayed here by myself.
Scott Benner 1:02:46
But what did you What did you say though? No, no, thank you. Did you bother telling them? Why do you think they knew why? I
Kate 1:02:57
don't I don't think they would understand why.
Scott Benner 1:03:01
Okay. I mean, I believe that I don't I don't think so if I'm being clear, I don't think that your parents is an example, or anyone's parents who would do something like this. I don't think that they're sitting like, you know, I don't know, the bad guy from a 40s movie, wringing their hands and planning your demise. You know, the
Kate 1:03:21
most frustrating part of it is that it comes from a place of love, and his like, but you can't say that.
Scott Benner 1:03:29
Or maybe there's a better way to talk about this. And maybe there's not, by the way, like me, you've alluded to it, maybe it would have been difficult. Like maybe your mom could have come up to you as nicely as possible, and tried to have that conversation with you. And even if she said everything textbook you might have gone. Are you calling me fat? And maybe it just would have gone that way anyway, like, I have no idea. But you could try, you know, just use I don't know what animals let their kids go at a certain age and never see them again. Maybe we should try that.
Kate 1:03:56
Most animals, most animals.
Scott Benner 1:04:00
Maybe we should try that for a while a couple of generations have just been like right leave good luck, and we'll see how this goes and keep me out of your problems. And maybe I won't make them worse. Oh, my gosh. All right, Kate, I really appreciate you having this conversation with me and sticking through the technical trouble and everything. It was really lovely to get to know you. I appreciate it very much.
Kate 1:04:22
You too lovely to finally get to speak to you in person. Well, I've been listening for long.
Scott Benner 1:04:28
That's it's so nice. I can't believe you've been listening that long. That's terrific.
Kate 1:04:34
It certainly helped me a huge amount.
Scott Benner 1:04:36
I'm glad I really am. So again Pre-Bolus saying like so management ideas helped you because you didn't have those. Do you like hearing the people's conversations is that are that I
Kate 1:04:49
love hearing people's stories. I think when you see diabetes represented in them when you see diabetes represented movies, and it's almost always entirely incorrect. When you see it represented in the media, it is either doom and gloom, or someone showing what a good day they've had. For the most part, I'm certainly predating the podcast, I did not see anyone struggling with control represented, okay. It appeared that I was the only person struggling with control. And you knew that mustn't be true. Because when you go to the clinic, there are other people there who are clearly struggling with control. But their stories are not represented. So
Scott Benner 1:05:42
you think, is it to say then that the podcast does a good job of accurately representing what it's like to have diabetes? Yes. And that that's important to you? Absolutely.
Kate 1:05:54
And the the episodes with Janee, the big episode about variable, I must have listened to that episode, like 100 times.
Scott Benner 1:06:05
I would like it if everyone listened to all the episodes 100 times, please. Thank you.
Kate 1:06:12
That was one of my favorites. Definitely. Why? It was it's really like this. And I sent it to other people, for them to listen as well. This is what it's like for me on a daily basis. Because people don't see, you know, the number of times I have heard, where you just watch what you eat, and you take some insulin, and then that's fine. Is this. Okay? Yeah, I'm glad you say that.
Scott Benner 1:06:40
I know, that's hard. She and I, Jenny. And I just, I think we just finished up recording the myth episodes, because that was something else. We were trying to shine a light on just what people think and what you hear in public. But you know, what is obviously, mostly not true about your life.
Kate 1:06:59
Our local health center has a special rate for people with disabilities, but they don't stay on the website, what they mean by that. So I had phoned them to see if they included diabetes, as a disability that you would get discount to attend, they'll send her for. And I was told by the woman on the phone that diabetes is not a disability.
Scott Benner 1:07:25
hardly think it's like having a cold, except you get a pump. So yeah, nobody's I mean, it's your point, nobody's going to understand it. As well, as you're going to, I've come to believe that the that statement that doctors tell you like, like a good doctor will tell you listen, in six months or a year, you're going to understand this better than I am. And I think they say it to you, to give you I don't know where that statement comes from. I really would like to dissect it more. But I think it's I think it's, it doesn't help people the way they intended. I imagined they intended to saying, Look, you're going to gather up all these experiences, and eventually you're going to know so much about this, you're going to make me look like I don't know about it, which, you know, hint, hint, they'd already don't know about it. But I don't think that that's a comforting thing for newly diagnosed personally. What do you mean, I'm going to no more than the doctor? That doesn't make sense. Again, it's
Kate 1:08:22
not like you can you can tell a newly diagnosed person you're on your own with this, right? Yeah. Am I? I don't I don't mean it exactly like that. Yet. There are resources and other people and medical professionals that are available to you with help, but they can't understand it for you. Yeah,
Scott Benner 1:08:39
that really that's that's a wonderful sentence. I think that helps. That's why Yeah, I've been thinking about that a lot lately, right? Because I think what they're probably thinking is, hey, listen, you're fine. This is all on you, I'm barely going to help you. And if you don't figure this out, you're gonna have incredibly bad health outcomes. But you know, instead of they go, Oh, don't worry in a year, you're gonna understand this way better than I do. It's like, I guess they're trying to give you like an attaboy like some like a lift up. But I just think that better communication and more words, sometimes is the way to go. You know, just tell them. This is difficult, but it's doable. Here are a bunch of people doing it. Well, that is possible. So set up that there's hope. And then give them some basics, here's what you're really going to have to know you're really going to need to know how insulin works, you're really going to need to know what your blood sugars are, you're gonna have to understand how food impacts you're gonna have to be flexible. These things are going to come in time you're going to have experiences those experiences will inform you. I know this sounds like a lot now, but we'll write them down so it doesn't seem as bad. Here's the fourth. Keep notes as well. Right?
Kate 1:09:50
I have graphs. I have graphs
Scott Benner 1:09:54
of your notes and just trying to figure it all out.
Kate 1:09:57
Is what what am I in while I'm getting through a period of time and how those are affecting each other, I have graphs.
Scott Benner 1:10:05
Okay, let me end with this. How was your blood sugar today? Like, what are your? What is your range? Like? Were you, you know, you struggle How easy is it for you, etc.
Kate 1:10:16
I have been between alarms all day, which is not to say that it's been perfect. It has been between five and nine all day.
Scott Benner 1:10:31
Five is 99 is 162. between 90 to 162. All day, what time is it that right now? It's late, right?
Kate 1:10:40
It is 7pm. Okay, yeah,
Scott Benner 1:10:43
cuz it's like two in the afternoon here. So that's terrific. What have you eaten today?
Kate 1:10:48
This morning, I had some natural yogurt with a very small amount of granola and a sugar free sweetener and my yogurt and I had some fish sticks. And at lunchtime I had some homemade chicken curry with chickpeas in it and broccoli. Sounds
Scott Benner 1:11:10
like a good day. It really does.
Kate 1:11:14
I've had about 30 grams of carbohydrate today. Nobody's
Scott Benner 1:11:17
asked me what I ate today so far. But I would tell you if you asked me, and let me tell ya, I call your mom up. You're like listen, I had a key lime coconut milk. Yogurt this morning. I had one egg with one shrimp. I scrambled the egg. The shrimp had hot sauce on it. I cooked them together and put them in a small wrap. I think the wrap is like 20 carbs. I've also taken a digestive enzyme with my food which by the way, I wondered if you shouldn't try earlier in the episode.
Kate 1:11:50
I actually got some last week. I started taking them on Friday. And I find them to be slightly to effect.
Scott Benner 1:12:00
Oh, here they come out the other side. When you do can you take fewer don't take them with every meal take them maybe more with protein stuff that's harder to digest.
Kate 1:12:10
I was thinking I would take them with like larger meals. Rather than it says take no more than three a day. Yeah, it was meals.
Scott Benner 1:12:22
I tried to stack them with the food that looks more like it's difficult to digest. If you don't, I mean, I
Kate 1:12:29
went through a period of eating like protein and almost exclusively raw vegetables and was having like real stomach problems. And as it turns out, that's probably the worst thing you can eat for so digesting. Yeah,
Scott Benner 1:12:43
for sure. million percent. But I mean, the point is that some type ones just have slower digestion, and it's not gastroparesis. So I would think if you see your insulin hitting pretty consistently, and you're not like getting, I don't know, if you're not getting impacts from food hours and hours and hours later than you expected. You might just have a slower digestion and some of these enzymes like peppered through your meals, like in decent places could really you might even see your insulin go up go down a little bit because the foods not sitting in your stomach as long.
Kate 1:13:17
I do you sometimes see where my insulin will take effect. And I'll go low and be looking at this low going. Should I correct this low? I've just eaten and then have a colossal high because I've had to correct you know, a low blood sugar that has gone to like 3.1 and falling. Yes. But haven't digested the dinner yet.
Scott Benner 1:13:42
Well, that I mean, listen, I'm not saying you don't have gastroparesis either. I don't know. But I'm just saying that this would be an easier way to like, look into.
Kate 1:13:50
I'm hoping the the enzymes will stop that from happening. Yeah, good luck.
Scott Benner 1:13:56
I mean, I don't know what else to say. Like, I won't see you again. So good luck. I mean, I could say something your mom would say, that's not gonna work can't give up now. How's that? sound more parental to you.
Kate 1:14:12
The more along the lines of why don't you just digest properly? No. Oh, I
Scott Benner 1:14:15
see Kate, you're doing it wrong. Or when you meet? Oh my gosh. I'm sure she'll have to be 100. Me everyone loves to be honored. But please be nice to each other. Okay, Kate, I'm going to hold on for a second. I'm going to say goodbye and I'll wrap some stuff up with here at the end.
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#1155 Grand Rounds: School Nurse
Scott and Jenny discuss proper type 1 diabetes management in schools.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, welcome to episode 1155 of the Juicebox Podcast
Welcome back everyone to the Grand Rounds series. I hope you're enjoying it. Today's episode is for school nurses. If you know a school nurse who'd like to know more about type one diabetes, send this one to them. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes. If you'd like to help with type one diabetes research, you can do that right there from your smartphone or your tablet in just 10 minutes. T one D exchange.org/juicebox. They're looking for US residents who have type one diabetes or are the caregivers of someone with type one. You're going to help people living with type one diabetes, you may help yourself you're definitely going to support the podcast in less than 10 minutes T one D exchange.org/juice box please go fill out that survey. I cannot tell you how much it helps.
This episode of The Juicebox Podcast is sponsored by cozy earth.com Cozy Earth is where I get my clothing, linens and towels from they're incredibly comfortable and temperate. I love them. I really do love them. And I love that I can give you an offer code that will save you 40% off of your entire order. Just use the offer code juice box at checkout and you will save 40% at cosy earth.com This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since is going to let you break away from some of the CGM norms you may be accustomed to no more weekly or bi weekly hassles of sensor changes. Never again, will you be able to accidentally bump your sensor off. You won't have to carry around CGM supplies and worrying about your adhesive lasting. Well that's the thing of the past. Ever since cgm.com/juicebox. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox. Good morning Jenny. How are you?
Jennifer Smith, CDE 2:44
I'm fine. How are you?
Scott Benner 2:46
It's Monday, I'm on my way to the dentist after this. I don't know how good I am actually.
Jennifer Smith, CDE 2:50
Oh fun. Hopefully they find nothing. They say you have sparkling tea.
Scott Benner 2:55
This is the end of a thing for me. So this is this is the easy visit after the two where he's like, sorry for the pinch and then stuck a needle through the palate of my mouth. Oh, oh, sorry, for the pinch. What a way to put that the pinch, sorry that it feels like someone's running a hot poker through your face. Actually, our dentist is terrific. So I shouldn't say that he's very good at making injections. Today, we're gonna go over the school nurse portion of the Grand Rounds series. And this one is great, because we added it late to the list you and I did. But then through happenstance, I started seeing a mass flood of school nurses come into the private Facebook group. And it turns out that just it just took one person in a different Facebook group for school nurses to say, hey, if you're having trouble with helping kids with type one, you should go check out Juicebox Podcast. So like a serious influx came in. And I took that opportunity to make a post and say to everybody that's in there, 45,000 people in there, there's gonna be a bunch of new school nurses in here, new members that are school nurses, what would you like to tell them? And then oh, my gosh, Jenny, the post ended up reaching 18,000 of my members, which if you don't know how the Facebook algorithm works, that's generous. Because even though there's 45,000 people in there, it doesn't serve it to everybody all the time. And it's
Jennifer Smith, CDE 4:21
interesting. I know nothing about the like people, they are looking at putting a picture in here for the algorithm. I have no idea what that means.
Scott Benner 4:30
Means the algorithm likes pictures, so it'll show it the more people and people like picture so they click on them. But this post got 170 replies, wow, after being seen by 18,000 of the members. Nice. And all I said was there's a large influx of school nurses who have just joined the group. I'd love to see a vibrant conversation aimed at them. What are your best tips? So that's what we're gonna go over today. Great. Yeah. So this is feedback from the community. These are from real moms and dads, and I have some input because I had a kid go completely through school. With a with type one diabetes, yes, I want to start by highlighting the anxiety that I felt our daughter was diagnosed when she was two. She was MDI for a couple of years. My first compelling feeling about getting a pump was I don't want another person to stick my daughter with a needle every day. Oh, interesting. That was just it. I mean, I don't know why that occurred to me like that. But I was like, I don't want that. So we got Arden and Omni pod. And that took away that one little thing, but you know, didn't really help anything else. So,
Jennifer Smith, CDE 5:36
right, it still means somebody else is pushing buttons. Yeah, right. And I don't know, like, I've always felt when I've gone to the doctor, and had to supply the thing to have them download. It's almost like taking a piece of my body and handing it over is kind of how I felt. And it feels very weird to hand that over. So I can imagine being a caregiver of a child or some, you know, or for somebody else. Yeah, the idea of that being touched, right?
Scott Benner 6:07
I'm glad you brought that up. Because I had this experience with Arden all the time, where I found, like, she's the nominee pod, right? So it's an insulin pump, that's tubeless. And the controller for it is therefore not attached to her. Right. But it has a physical distance limitation. It won't work if you're a certain distance away from somebody. And I used to have to tell her, Hey, stay still for a second, like stand here. While this thing makes a connection. It wasn't long, but it felt the humanizing to me a little bit.
Jennifer Smith, CDE 6:42
Yeah, I can see that. Because from a tubed perspective, you already have that mental piece of understanding that it's there. Sure, I have to sit here and a child might even not think about the fact that they need to sit there because the tubing clearly is a is a visible connection piece, also
Scott Benner 7:00
push a button on a two pump and hand the pump back to them. And then it does what it's going to do while they're walking away. And yes, before, I don't know, I just did something that always stuck with me that there was something not right about, even though it wasn't a demand, it was all done very kindly, but it was like you have to stand here stand here for a second. And it just made me think of that when you said, even just handing my data over to somebody else feels like I'm giving something away. It does. Yeah. So anyway, I would say keep that in mind. You know, when you're dealing with these kids that, you know, and you'll see as you go through the feedback here that there are a lot of opportunities to create moments where they get to feel poorly about things and and you're not gonna know they're happening, you know,
Jennifer Smith, CDE 7:44
and I think that in this same kind of line of talk, as a school caregiver or school nurse, that piece of hand the product over to me, when I mean, this is a beginning start of talking to the family, does the child actually know how to button push, and all you really do need to do is truly watch them push the button and make sure that the figures in the facts that they're putting into it are exactly what they need to be then great. Don't touch the product. There's there's no reason or anxiety,
Scott Benner 8:16
if they're going to do it wrong. Give it to me. If that makes the person feel like Oh, I'm that you lose your autonomy, right? Yeah. And I'm sure there are kids who aren't old enough or don't know how to do it or anything like that. That's one thing. But that is needed, you make a good point. I'm going to start here with this, this person just says I absolutely love our school nurse, she and the two ladies that helped her have become like, Mom, number two to my son. Oh, yeah. And the other diabetic kiddos at the school, I couldn't ask for better support system, and I have them, they're willing to learn more willing to help my child, I don't even think they realize how hard it is for me to give up control, but I completely trust them. Now, that's great. And many of you might be doing that already. But as we get through other feedback, you're gonna see that that's not everybody's experience. And I'm always the one the first one to say like, school nurses are no different than other health care professionals. You don't know who you're getting until you get them. And, you know, my problem always is that if you get somebody who's combative, or egotistical, or whatever might happen there and you have you get into this battle with them, you could just think this is normal and just take it. And that's, you know, upsetting to
Jennifer Smith, CDE 9:25
you. And as you bring that in, I think I've seen that more in working with families. I've seen that attitude, if you will happen a lot more with nurses who have and again, this is not all of them. But nurses who've been around for a while and have had experience with type one diabetes, or have an idea in their head about it, and how it should be managed. But it's very aged information. It's the old 15 and 15 rule right for treating lows, it gets stuck there. And no matter what is told to them, that's what they're going to do. And this is where those plans that you come in to school with, to care for a child who has some type of medical special need, like diabetes, those become really important and can be more of a teaching tool, then to say, Hey, I see that you, you didn't know what you were doing. But that was years ago, and we have to update this or each child that diabetes is into, you know, an individual same
Scott Benner 10:32
for every person, or even every food and people bring this up in their feedback, two main messages through through all these 170 comments are, please don't talk down to us. What I'm hearing is that that's how people these are their experiences and work with us. You know, like, yeah, and that that struck me too, is like, how did it become adversarial so quickly? I just want my kid to be healthy and in class and not missing time. And I'm assuming you want that as well. Right? How's it possible? We're arguing, you know, like, like, we're, we're literally on the same team. This person just says, Please don't talk down to parents about how they manage. This journey has been evolving over time. For us. It was quite emotional in the beginning. I didn't appreciate the discussions about checking everything through the doctor. Yeah, so it sounds like the school nurse anytime the mom said hey, could we change this or give her a little more a little less? Well, we'll have to call the doctor. I'm assuming from the school nurse side. That's something they have to do. But you got to see what it feels like here like I know what I'm talking about. Give them another half a unit I've lived through this 50 times right? Like on oh, we're gonna call the doctor with a law you're calling the doctor which is not going to get a response today. And maybe not this week. Right now my kid's blood sugar is going to be high all week long. Because you know, what's the point like at some point you got to be a an ally in this. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use G vo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information. This episode of The Juicebox Podcast is sponsored by cozy Earth and right now I'm looking at cozy earth.com to see what's going on. I got oh look at this bamboo pajama set for ladies. That jogger pants for ladies looks like plush lounge socks. That's one of Oprah's Favorite Things. There's the bath collection. We love the waffle towels, but there's also premium plush bath towels. Everything that you see here can be had for 40% off with the offer code juice box at checkout. Even the sheets now we use the bamboo sheets, you may choose different linens I don't know what you're going to love when you get to cozy earth.com But we sleep on bamboo sheets from cozy Earth. They are incredibly comfortable. And I bought them myself with my own money using my own offer code juice box at checkout 40% off is what I saved you can as well at cozy earth.com today's podcast is sponsored by the ever since CGM boasting a six month sensor. The ever sent CGM offers you these key advantages distinct on body vibe alerts with higher low, a consistent and exceptional accuracy over a six month period. And you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly or bi weekly hassles of sensor changes. Not the Eversense CGM. It's implantable and it's accurate ever since cgm.com/juicebox, the Eversense CGM is the first and only long term CGM ever since sits comfortably right under the skin and your upper arm, and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off. You're looking for the ever since CGM ever since cgm.com/juicebox. You know.
Jennifer Smith, CDE 15:28
And I think another piece that adds into this, especially more recently is that a good majority of people are using some type of an algorithm driven pump. Yeah. And that brings in some adjustment to what the parents have learned how to navigate because they're with it 24/7, right every minute of every day, and they're looking at data, and they're analyzing it for adjustments and what to do and what works. And while school nurses have kids every day of the school week, their interactions with them are very momentary. They're right, they're not all the time. And so again, what they might have learned about something like treating a lower blood sugar, is there's a difference now with algorithms in how you treat and how quick you leave, how quickly and what amount you use in the same for highs. Maybe the pump is suggesting this amount, but you know a little bit better because of your experience. Those are things that, again, they technically have to be written down as a guiding post for the nurse to use. But they may shift and change through the course of the year, especially because kids grow.
Scott Benner 16:39
And even if they're not using an algorithm, they might be acting as one, not even knowing it, like oh, you know, correct after this meal, we always do a Temp Basal increase, or, you know, like, little adjustments to insulin, which in the end is what an algorithm is doing, making like, unseen adjustments. But these people might already know, like, Oh, I know that with popcorn, and this drink. She needs you know, X, Y, Z insulin, right? That's not going to be reflected in the orders that the doctor put together that said, like, you know, for every 10 carbs, it's a unit of insulin, right? Yeah, except for when she eats like this, or except after lunch, or I mean, after gym or something like that, like they might have? I mean, might they're definitely going to know something about this, you don't know. And then the touch point here is that you've put yourself in a position where if you're not being flexible as the school nurse, you are now in the power position, you're holding these people hostage, right? They're trying to do something with their with their health, you're saying no, you're not a doctor, you're not even their doctors. They don't know you, you know, I mean, you're the person at the school who's a school nurse, like that's a lovely job. And everyone's thrilled you're there. And thank god, you're there, because plenty of schools that don't even have nurses. But you can't become the I don't know the border guard and say, No, you're not allowed to do that, like I do this 24 hours a day when I'm not with you like why are you the you know, the end all be on this? I think that that's just important to hear if you're the school nurse, like, Oh, is that how that could feel? On the other side? I'm just trying to do the right thing. I'm following the orders here, right now. And
Jennifer Smith, CDE 18:20
I think too, because there's there's a lot to navigate in a school environment, right? There's a lot as you mentioned it before, that we don't really want kids to be consistently pulled from class, it decreases what they're therefore which is learning, right? And especially if that pull is always at the time of a class that's already kind of harder for the student or that they might be falling behind in because they're constantly being pulled from that class. So I think, you know, in using a lot of these tricks that as the parent or the caregiver, you've learned, you also have to think about it from the angle of the nurse as well, and the angle of your child in that we want to simplify as much as possible. So that, you know, little Lucy doesn't always have to go back and forth to the office four times a day to figure out what is typical coverage for this type of a meal. Maybe you don't feed that meal at school then, right? Maybe they're reserved for the weekends when you have the navigation tool, and you make the weekday a little bit more simplified. I mean, there are there are ways to work it on both angles. I think school nurses, they tried to do as well as they can in some school nurses don't even have coverage of just one school. They're not there all day. They might be navigating between five schools. Yeah,
Scott Benner 19:42
I've never met an ill intended school nurse. Right. Right. But I have dealt with some of them that were problematic for our life. Yeah. Oh, I'm, I'm quite sure. Yeah. So I know I've said this on the podcast in other places, but it very much fits here in second grade. My daughter had a standard time she'd go to the school nurse to have her blood sugar check. There were no CGM at that point. And she went every day, every day at this certain time. And then she'd come back. She was only gone for a couple of minutes, 10 minutes she was back, and we were on our way again. But she was falling behind significantly at math at like, really, really badly. And it, we didn't know why. And it wasn't till the following year, because her teacher carried over with her class. She went, she took took on the same class and third graders she hadn't second grade. And over the summer, she like literally called me and said, I know why Arden is struggling with math. And I was like, why is that she was while I was just sitting down and filling out my lesson plans and getting my book ready for next year. We are sending her to the nurse, right? Like two minutes before the math portion of the day. And she's missing the explanation every day, like every day, but she comes back and she puts her head down and tries to figure it out. She doesn't make you know, she doesn't say anything. But in a year and a half. Like we were literally I've joked about this before we thought like oh, maybe he's a little dumb. You know, like, like she was really she she was really struggling in math. And you know, it took a couple of years to like, get her caught back up again. But that wasn't the worst part. The worst part was that for years and years after that, Arden believed she was not good at math. Oh, but she is, you know, and it's taken a number of like now that she's in college has taken a number of advanced like, mathematics stuff that you look I look at and I go I don't understand why numbers and letters are on the same piece of paper. And like, what's that shape? But she gets that now but lived a long portion of her young life thinking?
Jennifer Smith, CDE 21:46
I'm just not good at that. I'm
Scott Benner 21:48
not good at this. Yeah. And that's just from that one decision. Let's send her every day at 9:45am. Right.
Jennifer Smith, CDE 21:53
And it was a decision that was we
Scott Benner 21:56
had to do it.
Jennifer Smith, CDE 21:57
You had to do it right. And it circulated around one piece of her life, which was diabetes is circulated around when we don't have a CGM. This is the time that we need to have a blood sugar or some visibility to what's happening. Probably it was coming into snack or maybe it was just before lunch or whatever was happening. But you have to kind of mold all of these things together to make it work for the child. Yeah,
Scott Benner 22:22
if you go through these, this list of people, please let my kids stay in class, do everything you can to let them stay in the classroom. One person says, if you have the ability to go do what you need to do in the classroom, like don't even make them come to your office. You know, also, you know, there are a lot of sick people in the nurse's office, right? And I'm not looking to get sick. The you don't I mean, like I don't want the cold is going around the building. Like don't bring me into the small room with all the sick people. If
Jennifer Smith, CDE 22:51
you don't everybody is vomiting, please. There's
Scott Benner 22:55
some kids, they drink a juice. They're like, I'm good. They're like now you gotta sit here. Now you're sitting there for 15 or 20 minutes. And you know, right. Also, psychologically, I'm always with sick people. Right? Like the kid you intersect in the nurse's office on Mondays? Not the same kid you see on Thursday. Correct? All your brain sees is that I'm always with sick people. Right? And am I sick? You don't I mean, right?
Jennifer Smith, CDE 23:19
There's making a connection for the child of I have diabetes, it must be an illness. I'm sick i n. You know, unfortunately, that kind of crosses over into a lot of them. You know, what they might hear in the doctor's office about being safe and being careful. And you know, you're more prone to getting ill and like, kids hear an awful lot even though they may not verbalize or question what they're hearing. But eventually it kind of starts to sink in. So that's a very good point to make. Honestly,
Scott Benner 23:52
when Arden got into high school, the we were at the meeting in the summertime and the nurses like where your daughter and I were going to be best friends. And I was like, Listen, I don't want my daughter in your office at all if we can help it right. Yeah, I don't. Don't be friendly. I mean, you can be friendly with her. But like, don't keep her there. You don't I mean, this isn't a club. She's like, got the kids hanging out. I'm like, no, no, they're at school. are hanging out with you? This is not the sick kid club. No, thank you. Like, like, but she meant it so positively sure, you know, and upbeat. And then then there's a pushback. And then we had to explain, you know, listen, in the summer before art and went to kindergarten, I went to the elementary school that was local to me where my son had already gone. So I was a person who they at least knew. I went into the office and they said, Hey, I'd like to set up the groundwork. You know, for my daughter being here with diabetes. And they said Your daughter's not here. I said, No, no, it should be here next year. And they laughed, like literally stood the office and laughed at me. I was like, No, I really think this is something we should be ahead of you Yeah, there's like, no, no, like, we're gonna get your 504 plan set up. It's gonna be fine, right? I was like, Okay, I don't know anything about it, Jenny. I was like, my kid had only had diabetes for a couple years. I'd never send a kid with diabetes through school. And they said, We're gonna have a 504 meeting. And I was like, great. So they bring me in a couple of weeks before school starts. If they sit down to give me a piece of paper, I'm not lying to you had five bullet points on it, I'm sure. And it was the most basic stuff. And they were like, This is the plan we're going to follow. And I looked at it, and then I got the laugh at them. You're like, I know, I said, if this is all you know about diabetes, my kid's gonna be dead in a month. Like so like, this isn't gonna do it. She's five, she weighs not very much her blood sugar bounces around a lot. CGM is weren't a thing yet. Like, you know, like, this is right. Using going to work, you know. So I went home. And I read, I think three different 504 plans that were available online. I think I got one from the ADEA. I got one from JDRF. I got one from somewhere else. I read over them. And then I cherry picked from them the things that I thought impacted her. And I built a 504 plan. I brought it back and this is the 504 plan. And they laughed at me. They're like, we're not doing all this. And I was like, oh, no, you are. And then we got into it. Right. I did not win that fight. And about whenever the spring was, you know, so a few months later, they had a system like we had Oregon come down at certain times, I was able to get that done. Check her blood sugar at this time. Bring her back before recess. Check her blood sugar before she goes outside for recess. Check her blood sugar before lunch, give her insulin, check her blood sugar two hours after lunch. I think that's about how I had it set up. So one day, this little boy comes into the nurse's office with a breathing problem. And they had to give them a breathing treatment. And it was a lot of like it was unexpected. Sure. And you know, a lot of running around I guess in the office a little bit. But it happened right before Arden's recess. So they just forgot Arden they were supposed to call down to have her come up. They didn't do the call. She's five, she just was like, right out on roles right out on the playground. Now, Scotty had a backup plan. Okay, so all the stuff that was set up, I had an alarm on my phone. So I know I'm supposed to hear from them. At this time. I give a little bit of leeway. But a couple minutes later, I'm like, I call the nurses office. I said, Hey, you didn't call me about art. And the nurse goes up. Oh, Arden and then hangs up the phone. I was like, Okay,
Jennifer Smith, CDE 27:39
so like, can you get in your car and you're driving, sat
Scott Benner 27:43
next to the phone going, Oh, my God, like just my heart, my throat. Oh, and I get a call back. Obviously about 10 minutes later, hey, it's us. Arden's fine, and I'm like, oh, yeah, she goes, and she tells me all about the kid with the breathing treatment. I'm like, fantastic. I said, where, you know, how's Arden doing? Well, she was low. And then goes on to tell me how she's on the top of one of those turtle like jungle gym things crawling around, and they tested her blood sugar. It was like 52. So I took that opportunity to say, look, that stuff I brought you in the 504 plan that you laughed at me about this is why it's there. Pretty important. Yeah, you know, and we use that opportunity to move forward. But it was a it was a growing experience for them. Because they finally were like, Oh, that guy's not crazy. The thing he said was gonna go wrong, actually went wrong. You know, and that was the beginning of the relationship. Then those two nurses and I all through elementary school, we were like, thick as thieves because they trusted me that right. But I was a soothsayer, I predicted the future. Right? You know, and, but we had such a great process. And then I'll tell you that the what we did then is when art and went to like middle school after that, I brought those nurses with me to meet the nurses from the middle school for the first time. That's a great idea. Because they sat there, they're like, whatever that guy says. Just do it. And like like getting a you don't and that built that I had built in confidence then with the new nurse. And then we did it again. At high school. I brought the middle school nice to the high school when the high school nurse started pushing back, that middle school nurse was like, Listen, I have never seen a kid with a stable or steady blood sugar's as this kid, like, listen to what he's saying, you know, but there's a lot or Jenny, like it was a ton. It's
Jennifer Smith, CDE 29:25
an enormous amount of work. And then when you've got schools that really do give a lot of pushback, no matter what information and what data you provide, to prove what you're trying to have written into their plan of care. I mean, that is a lot of the reason that, you know, I actually encourage people that you sit down with your endo and go through that and even get their signature on it because as you said early on, many times they're gonna say, Well, we have to call the doctor about that. But the doctor signatures at the bottom of that plan If you're more likely to decrease the need to call the doctor because clearly everything on this plan was already okayed by the doctor
Scott Benner 30:09
I have or had when Artem was in school. I don't know the sentence Exactly. But there was a sentence in the 504 plan that said, you know, these are all the rules, but decisions about food dosing, all that stuff are adjustable by the parents. Yeah, that was it. You know, another
Jennifer Smith, CDE 30:32
similar line that, again, something usual written on a lot of people's, as parents have final say, or final decision in dosing, meals, snacks, low treatments, all of that kind of stuff. This is the plan. But, you know, if questions, call the parent, the parent has the final say, it
Scott Benner 30:51
protects the nurse, honestly. And also, I think, allows the nurse to feel a little comfortable, because, I mean, I can put myself in their position, the doctor's orders, say, you know, three units for this, and I'm like, No, do four. And they're like, Oh, I'm gonna do put an extra unit and so on this kid, send it back to class, so they can pass out, right? And then I didn't know, you know, like, so it's a big deal to get that into your 504. If you can, right? This person says, Please be careful about how you talk to children. They are sensitive, they know a lot. Don't comment on their numbers, or the carbs on their plate. Don't scare them about high low blood sugars. Be patient with them, because their blood sugars can affect their moods. This lady also says please, please don't ask me to do more than I'm already doing. Like, I have enough on my plate till I'm doing the best I can. I think that's a big deal. They're like, don't scare the kids don't try to it is, you know, I don't know, take what you think, you know, and pass it on to them in a split second in passing moment when their blood sugars are all over the place. Correct.
Jennifer Smith, CDE 31:54
And I think from that judgment standpoint, it was this person said something about, you know, don't judge on the carb kind of thing. Don't judge on the food in general, right? That's not your job. As a school nurse, quite honestly, there's probably somebody else in the background, who's already assisting the family to navigate proper nutrition and an intake and everything that might be needed. And you know what, maybe the kid has a lot of really considerable food preferences, right? Maybe the only three different things at lunch, and that's what has to be sent. And maybe it is 80 grams of carbohydrate. And as a school nurse, you're like, well, their blood sugar will look better if they didn't eat so much carbohydrate, that's not your business, just not their
Scott Benner 32:34
blood sugar would look better if their pancreas was working, right. But a lot of ifs in there, the no shame thing comes up over and over again, with the feedback from people like please don't shame my kid. It's all hard enough already. Open communication, big deal. You know, like, let's go back and forth be on the same team? Why are we fighting with each other? Like, that one's fascinating. You know why, right? Like the nurse is protecting their professional life. And, you know, and you're trying to protect your kids health. And you know, that in the middle are these orders that are probably not going to work most of the time. So, you know, sucks? Could you help us with our 504 plan, so that, yeah, I'm throwing that in there for school nurses, like people don't know what the hell a 504 plan is, when their kids are diagnosed, usually, it'd be helpful for them, if you could walk them through it, tell them how the process works through the school, that kind of stuff.
Jennifer Smith, CDE 33:25
And if you've worked with somebody who has a system that's working really well with type one, and you have their 504, obviously, getting rid of all the personal information that might be in it, but maybe have those as a good example, for families who are new that you're working with and are questioning, I don't even know where to start with a 504 plan. Or maybe you have a list of sites of available examples to be able to provide them with. And then they can pick and choose because again, all of these 504 plans being very individualized, you're very likely to find one that is almost similar enough to what you're doing with your child. And you can start it as a template that it works better than somebody else's 504 plan that's like, you know, not eating very much, or whatever it is,
Scott Benner 34:12
yeah, and make little adjustments to fit you. And I also I like to say to, Don't be unreasonable in it. Because when you start being like, hey, you know, my kid really needs a Ferris wheel, you start making big asks, or like, you're trying to take advantage of this. And then you don't get taken seriously, because you look like you're, you're grabbing. You know, like, I think that's important. I also, I like to remind people that usually as the kids grow, there's something on your 504 plan that was super important in second grade, that doesn't matter in fourth grade anymore. And if you want to be a real hero at your 504 meeting, say oh, you know, like line three there, we can strike that you guys don't need to do that anymore. Like it feels like you're giving something back to them. You know, like there's one less thing for them to worry about. So, you know, I think that's a good idea too, especially
Jennifer Smith, CDE 34:58
as things like recess and whatnot change. I mean, my, my little guy has two to three recess sessions a day. And my not so little older child has only two recesses once he gets to middle school, he'll only have one recess a day. So all those things are, as you said, their points of navigation from one year to the next that may change based on schedule, and what's going on for that child. And there might be some new things, there might be several things that are able to be taken out. Yeah,
Scott Benner 35:28
two opportunities in that example, to not replicate out of a classroom, for example, you know, that kind of stuff. This person says, I, our school nurses, terrific, I have nothing bad to say, but here's why she's terrific. She'll like discreetly pop into my son's classroom, check on him for a second, make sure everything's alright, slipped back out again, instead of him leaving class and missing that class time. But she goes on and on. But I think what she's really saying here is she has a school nurse who's putting that kid in the same polling that kids health at the same level as the mom does, yes. Like, do you know what I mean? Like she's, that's that extra effort that you have to put in when you you have a kid with type one. And
Jennifer Smith, CDE 36:05
in today's world, with the technology that we have, it's lovely that the school nurses even just popping ahead in to just visibly see that the child looks like they're okay. But I've gotten a lot of families whose school nurses are absolutely able and willing to do like, like Dexcom has Dexcom follow, or they might be using something like sugar meat in which they can look and follow online, they can even make notes about what was what was used for a treatment or whatnot, which translates right over into the parents. So it's a it's almost a seamless communication. And there's a lot less texting and stuff that kind of can happen. i There are there are kids, teachers and classrooms and even nursing stations that have things like was it sugar pixel and the glucose just visit they might have the name on, you know, so they know which one they're looking at. And again, that means that the nurse doesn't necessarily have to get up out of her office. She's just visibly able to see where are things going. What's this next child's schedule look like? You know, from that standpoint, it can be useful tools, technology
Scott Benner 37:05
was brought up over and over again from people especially because a lot of people do get into that situation where I think I've seen it, I'm seeing it shift more over the last couple of years. But in the beginning was CGM. So for people who are listening who don't know a continuous glucose monitor the device that the kids wearing, it's reporting back their blood sugar in real time that you can see on a number of different devices, right, like phones, Android, Apple phones, iPads, stuff like that. There was a time where they would say, well, we don't want that data, because then it's a liability, because now I know if the kids low, and if I don't react well or I don't see it for some reason, or my phone's not near me. Now it's my fault if the kid has a low blood sugar. To me, that was a really strange way to think about it. But it is that was the initial pushback from from school nurses. Like, I'm not at fault, if I don't know. So don't tell me. Some nurses were like, Yeah, give me the information. I want that. And more and more. I am seeing nurses following kids on CGM in schools, just to watch a kid's blood sugar for a day or two, it would take so much of your anxiety away, you don't I mean, you'd see what's happening. You can make adjustments or in you know, in concert with the parents make adjustments and not have all the worries that you had before. So embrace the technology, for sure. Right?
Jennifer Smith, CDE 38:21
Learn a little bit about it. I mean, that might be an additional session that you end up spending with the parents to learn from them. What what is the technology doing, especially if again, like I mentioned before, they are using an algorithm type of pumping system, learn what's the system really doing? How does it act, because all of them are a little bit different, right? And so it's really important to understand what one child system might do that another one's not necessarily going to do the same way. Yeah,
Scott Benner 38:49
I have some stuff here from actual school nurses. It says I am a school nurse, but I'm also a type one parent. It's extremely hard to follow doctor's orders when you know that that's not the right thing to do for the student. Luckily, I am the school nurse for my son so I can do what I want. But it's very frustrating when having to follow the typical standard orders that don't fit for everyone with other students. Yeah, then that's something to really remember is that you might have a great school nurse who is right there with you. I don't know why they wouldn't say that though. Like why why why not just like whisper go, Hey, listen, you know, I'm stuck here. Let's fix the water. So I can give me a little more autonomy here to help you write another school nurse on the school nurse and also a mom of a type one. school nurses with diabetics just have to understand that each student's diabetes needs are different. Just like student's educational needs are different in the classroom as a parent with type two a type one. What I didn't understand until working as a nurse in school is that you are held to the doctor's orders. Yes, the parents know how to manage, they know how to manage better. They know how to help keep the numbers in check, but I've got to do what the doctor put So on that piece of paper, yeah, so that's really, it goes all back. It's that one sentence on the 504. Yeah. Would you say you put it eloquently and succinctly?
Jennifer Smith, CDE 40:10
Yeah, it's just parents have final say it's dosing, snacks, treatments, etc. Whatever you want to include in that statement is that follow the orders. But parents have final say
Scott Benner 40:20
this parent says, I would just love to know what the nurse needs from me. Yeah, like, I want to help you help my kid like, so if your hands are tied, or you're having trouble with something come to me and tell me that let's see if we can work it out together. Right? That's excellent. This person made your point from earlier, don't settle for the way things used to be done. Yeah, a lot has changed significantly for the better for type one diabetes, for kids for health and safety, embrace the new technology, try to dive into it. This is exactly everything you said. If you've been at this for a long time, learn how to use an iPad, if you don't know how you figured out the apps that you can track the kids on, help us to push our kids to take, you know, good control for themselves. Sometimes an outside caregiver can really help the transition to more in dependency, that's a good point. Like, you have an opportunity there, right? Because the parents might be butting heads with a kid. But all of a sudden, you know, what's that analogy? I always say like, you know, if your kids play baseball, and you're the coach and your kids the pitcher, you never go out and talk to your own kid, you know, send a different coach out there, right? Not gonna go well. So work with the parents, not against them be an ally, stand up for my kids. This was interesting. Oh, that's a great one. If the district is making some ridiculous policy, or school administrators aren't allowing you to do something like for instance, a remote monitor with a CGM, you could use your voice to stand up. You could say, Hey, I know this is the rule. But these people are right. This would be great. If we did this, you know,
Jennifer Smith, CDE 41:49
and bring in safety whenever you're right. Very likely what the parents are bringing up and that you know yourself. It's a safety consideration. And if you can prove that what they're asking for actually increases the safety and decreases the risk to the school. That's a hit point.
Scott Benner 42:07
One of the best moments for Arden in going through schools regarding her diabetes care. It's also one of the saddest moments I've experienced. So I came up with something that I think is it's episode for the podcast. It's I think that episode is called texting diabetes. And there was this day where I was in the house and Arden was upstairs. And she I could see on her CGM, she needed a little more insulin. And I was about to get up and walk upstairs and tell her and I just didn't feel like it now post lazy and I was like, I don't want to do this. I picked up my phone and I was like, hey, I need you to Bolus a half a unit and admitted to later she goes, okay. And then I was like, Oh my god. That was easy. That was so easy. To move again. And my brain started racing. I was like, it worked from here to upstairs. It would work from here to down the street at her friend's house. Schools not that much farther. It would work from here. Oh, wait a minute. And then I froze, because I had trouble doing it at first. But I had trouble doing it. Because it turns out when she was in the house, and I felt like oh, if something went wrong, I was there to help. Right? Yeah. When she's not with me, I didn't have that same comfort. But then suddenly, I was like, well at school. I mean, the nurses there they have glucagon. They know what to do. I've explained it 1000 times. Like, you know, Arden was never a seizure at school. Like I don't want that. But I bet she'd be okay. Right. And then I stretch my legs. I was like, alright, well, now we're gonna start doing it at school. Arden's blood sugar's were never so good. As when she and I are in concert, we're just managing right through through texting. It's the it's the unsung hero of diabetes, texting seriously. And you
Jennifer Smith, CDE 43:47
may have also had leeway then in terms of what she could have on her person. I know some schools are really strict. And even if doctor writes that it's okay, or whatever their protocol is that things like, especially the older school blood glucose meters, or like the PDM for the controller, or what's now the controller for Omnipod had to stay in the nurse's office, it couldn't even stay with the child. Right? And so in that case, texting diabetes is a great idea. But you're not going to get anywhere because the child no longer holds their product to you. Well, I
Scott Benner 44:27
had to what did I have to do? I had to get her phone set up as a medical device in her 504 plan. That was the first thing I had to accomplish. Then I had to get them to put her phone on the teachers Wi Fi. Oh, so that we had, you know, stage stable communication. And that came with we had to go to a meeting where they got to look at Arden and tell her like you're not allowed to use your phone during school. Like like nowadays, I don't think it matters. I honestly I think that things have changed so much since then that's probably laughable to kids, but She took it very seriously. Like I told her, I was like, Look, this is a thing they're letting us do. It's making your day much easier. Like, you know, it's nice to say to kids, like your health is better, but kids don't think about that day to day. I'm like, Look, your life is easier. You're not going to the nurse. You know, if you need a little bit of insulin, you and I are talking it takes a split second, instead of you having to go through this whole rigmarole like, just be cool. And don't use your phone at school, right? One day she came home so seriously, she was so earnest. She goes, we got out of class early today. I was like, great, because I opened Instagram, do you think I'm gonna get in trouble? I was like, Oh, honey, I don't think anybody's gonna know. So
Jennifer Smith, CDE 45:36
it was like after getting out of bed, it was
Scott Benner 45:38
done. It was just the day was over. But she's like, I did open it while I was on the Wi Fi. And I was like, what an opportunity. I wish a teacher could have seen how much it meant to her to have that access. You know what I mean? But yeah, those are the things we had to do. Because the regular school Wi Fi sucks. Most of your buildings are built out of bricks and blocks, and you're not going to get good signals in some places. And that's going to panic the hell out of you. You know, when you can see the blood sugar, see it see it all of a sudden, it's just gone. So school teachers Wi Fi. In the end, they were very cool about it. I had a really wonderful experience throughout art in school. But I want to say this too. I recognized early on. When I came in that day, you know that that before kindergarten started that to those people I looked at in my mind. Like, do you mean like you were that you did? Yeah, I know. I wasn't I know that pre planning was the right thing to do. But to them, it wasn't something that we're used to I look, I look like a crackpot. And so I spent a lot of time not looking crazy. And I and I found the best way to do that is you don't over explain. Because diabetes has so many variables and steps and intricacies and nooks and crannies, that when you just start talking about it, you sound nuts. Like, you know, maybe you're like You're like because if the insulin goes into soon, and then she gets active, that activity is gonna bring her insulin down, then she might have a seizure, she has a seat like you You sound crazy to other people you're not by the
Jennifer Smith, CDE 47:03
way, you're not it's like a it's like a flow of everything that you honestly don't know. Right. But it's in terms of what needs to be applied in the school setting. That's all they need to know.
Scott Benner 47:17
Yeah, I'll also tell you, this emails that you send to nurses or people in the office that go over about three or four sentences make you look crazy. Gets into manifesto types. Yeah, you're also seeing it as a, you know, I hate to say like, seeing it as a, you know, a marathon, not a sprint, because it sounds, you know, sounds sounds douchey. But like it it is like, right? Like, you're not trying to get all the information to them today. Like, you know, it's it's a slow process, you're given an out a little bit by a little bit, you're building a relationship, you don't want end their people to they're just at work, right? You know what I mean? Like, don't, don't beat the hell out of them. They're, they're not, they're not, you know, they're just at work, like you go to work to you don't want people lump of extra stuff for you to do on all day. So pick and choose and, and try to, you know, try to not ask for more than is really necessary. Right? You know, it's all you're looking for is for your kids blood sugar to be stable and to be able to like, react to emergencies,
Jennifer Smith, CDE 48:18
and to allow them to also stay in class as much as feasibly possible. Right. I mean, that's again, what they're there for.
Scott Benner 48:25
This person said, you know, please be compassionate show patients over and over again, I want to point out how thankful people were in the feedback for the nurses and all the things they do this one person says, I think the Joslin diabetes Center in Boston has school nurse training sessions of maybe twice a year. Oh, yeah, that may be your local hospital has something like that? Yeah. Do you have anything to add that you think we might have missed? No.
Jennifer Smith, CDE 48:49
But that's interesting. Along the same lines, if you are a school nurse, and in your area there is a pediatric endocrine practice are several of them. It may behoove you to actually call and see if any of them have class type of education for people with type one. And that you could very well get some good information by just attending even one of those classes. Yeah. Right. Because that's free information. And while it is your time, yeah.
Scott Benner 49:24
Also joining the Facebook group for the podcast. Even if you just lurk in there for a couple of weeks, your understanding will lift way up. I don't want to end on a sour note. But I do want to bring this up. There is a line to like, you have to know your place a little bit. So I don't remember I honestly don't remember what it was but in high school, art in school nurse had a question about her care plan that she didn't understand. And instead of asking me are Arden she called our doctor's office? Yeah, no, yeah. And then I yelled at her a lot on the phone. So That's not any of your business. Like that is not uncommon, by the way, I see a lot. That happens a lot. Like, I don't know what you think you're doing calling somebody's doctor, but don't do. Yeah, yeah. And I want to say to this episode comes very much from the perspective of people who are trying really hard, who were very involved. And you may be also involved as a school nurse with people who don't understand a damn thing about diabetes and aren't putting any effort into it. But you got to not be jaded when you get to the next person who is trying, like, right, like, those are two different situations. I don't know how to tell you to help those people. I really don't. But, you know, right. Anyway,
Jennifer Smith, CDE 50:42
outside of giving them information about where they can get better. Yeah, information, go
Scott Benner 50:46
check this out. Have you heard you know, like, there's probably nice little ways to drop that in there. But saying things like, your numbers are crazy. And you're gonna, like, that's doesn't work, it doesn't work for doctors, it's not going to work for your school nurse. And anyway, I appreciate all the great school nurses that my daughter's had over the years. They were all fantastic. In one way or another. I would say that any stumbling blocks we came upon. I stayed calm, they stayed calm, we got past them. You know, the worst thing you can do, in my opinion, as a parent, is be the person who, when you walk into the building, or when the phone rings, they think Oh, it's this one. Like you don't you don't want your comes Jenny. your loins? Yeah, like, you don't want to be that person. Like, it's no, it's definitely not gonna have a good ending anyway. And I think too, as
Jennifer Smith, CDE 51:35
a as kind of a last point, it's also, you know, your child has one thing, or maybe a couple of different health things to navigate. And in those, I guess, instances, you expect the school nurse to become really knowledgeable about that issue. And you have to think that the school nurse isn't just there to navigate kids who have type one diabetes, they're there to navigate a whole host, you know, allergy medications, dosing of specific things for for irritations and allergies are through their heads. Yeah, there is. And so you have to understand that while you're, your child's needs are absolutely important. There are other kids who have needs that are just as important to and so expecting to establish some type of schedule that obviously works based on what's happening for the school nurse, ya
Scott Benner 52:30
know, it's, there's, there's a lot to consider there's a lot of human beings involved a lot of pressure. And, you know, I think there's some grace has to come from all sides to be perfectly honest, you know, and in the end, you're trying to help the kid be healthier, happier, become educated, and not leave with some sort of a feeling that they're, you know, broken or a problem or, you know, that kind of thing. So, anyway, I appreciate when everybody does, and I appreciate you, Jenny. So I'll talk to you soon.
A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that g VOKEGL. You see ag o n.com. Forward slash juicebox. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast and invite you to go to ever since cgm.com/juice box to learn more about this terrific device. You can head over now and just absorb everything that the website has to offer. And that way you'll know if ever since feels right for you. Ever since cgm.com/juice box. I'd like to thank cozy Earth for sponsoring this episode of The Juicebox Podcast and remind you that using my offer code juice box at checkout will save you 40% off of your entire order at cozy earth.com That's the sheets, the towels, the clothing, anything available on the website. If you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective, the bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CDC es a registered dietitian and a type one for over 35 years. And in the bowl beginning series Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698 In your podcast player, or you can go to juicebox podcast.com and click on bold beginnings in the menu. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast a hell The once over Juicebox Podcast, type one diabetes. The group now has 47,000 members in it, it gets 150 new members a day, it is completely free. And at the very least, you can watch other people talk about diabetes, and everybody is welcome type one type two gestational loved ones, everyone is welcome. Go up into the feature tab of the private Facebook group. And there you'll see lists upon lists of all of the management series that are available to you for free in the Juicebox Podcast, becoming a member of that group. I really think it will help you it will at least give you a community. You'll be able to kind of lurk around see what people are talking about. Pick up some tips and tricks. Maybe you can ask a question or offer some help Juicebox Podcast type on diabetes on Facebook. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com
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