#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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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 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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