Scott Benner 6/24/22 Scott Benner 6/24/22

#706 Bold Beginnings: Adult Diagnosis

Scott Benner 6/22/22 Scott Benner 6/22/22

#705 Episode Full of Grace

Grace has type 2 diabetes... or does she?

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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 705 of the Juicebox Podcast.

On today's program, grace is with me, she is shining light on the Facebook page. And her episode is a great look into what a diagnosis can look like when the doctors aren't quite sure what's happening. So we're going to hear Grace's story. And at the end, I'm going to tell you what grace just told me the other day. So this is many months after it's been recorded, and grace has some answers. I'll share with you what she's learned. Also, Grace has a really weird job, in my opinion, and somehow it's oddly connected to an episode a couple of days ago, but not really anyway, you'll see. While you're listening today, 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. Becoming bold with insulin, we're doing what grace does for a living. Where do you find out?

This episode of The Juicebox Podcast is sponsored by Dexcom and Dexcom makes the Dexcom G six continuous glucose monitor, you may be eligible for a free 10 day trial of the G six and you can find out@dexcom.com forward slash juicebox. Today's episode is also sponsored by in pen from Medtronic diabetes, would you like an insulin pen that does more than regular insulin pens? Well, if you do, then you want the in pen from Medtronic diabetes in Penn today.com. That's where you go to find out more. Don't forget to take that survey AT T one D exchange.org. Forward slash juicebox. All you have to be is a US resident who has type one, or is the caregiver of someone with type 110 minutes later, you'll be done with a survey. And you will have helped people with type one diabetes and supported the Juicebox Podcast.

Grace 2:29
Hi, I'm Grace, and I'm a type two diabetic as far as I know. And I'm an adopted mom, colon hydrotherapist. And I'm here to talk about poop.

Scott Benner 2:41
Nice. I'm only excited because no one's ever started off an episode like that. Well, let's, let's figure out a few things first, how old are you? 58. What do you mean, you think you're type two?

Grace 2:59
Well, I'm not making what's the word? I want to say? I'm I'm not making very much insulin. Okay. So I'm at the low end of a C peptide.

Scott Benner 3:15
And so you've had a C peptide test?

Grace 3:18
Yes. It was like 1.2 1.1 to one point, something like that. But I don't know if I'm Modi or not. I did do I paid for it myself because my endo didn't want to. She didn't see any point in me taking an antibody test. So I went paid for that myself and I do not have the antibodies. And then I tried to look into Modi testing. And from what I could see. It's like $2,500. And so

Scott Benner 3:50
I'm already confused. Hold on a second. So your doctor wouldn't just send you for a test.

Grace 3:56
No, she didn't see any point. She's like you either need insulin or you not. Oh, and I think that they're just, you know, I'm older. I've had it for a while. So I think she's just you know, in her head, she's pretty clear that that's what I am.

Scott Benner 4:14
A low level of C peptide can mean your body isn't making enough insulin and may be a sign of one of the following conditions type one diabetes, Addison's disease, liver disease, a high level of C peptide can mean your body's making too much insulin, it may be a sign of type two diabetes, insulin resistance, Cushing syndrome or a tumor on your pancreas. And where was yours at?

Grace 4:37
1.12 I believe it's right at the low end at the low end. Yeah, cuz I think like a point eight is type one from the test range that I had. Oh,

Scott Benner 4:48
yeah, I'm looking. I'm trying to find out right now. To see. Okay, so you took the test had a low range, but doesn't that More indicate type one and type two. I mean,

Grace 5:05
I would think,

Scott Benner 5:07
all right, second

minus ad thresholds denoted by Oh, I don't understand all this enough to talk about it threshold with fasting blood shoot really should be considered above 80 and below 250. Type Two diabetes over 250 under ad type one. Moody unlikely under ad and what was your skim?

Grace 5:41
1.12?

Scott Benner 5:43
Okay, so in our intermediate insulin secretion, is that level? If I'm reading this correctly, almost I don't know eight. All right, so hold on, we have to start over 1.12 Is that were you fasting?

Grace 6:04
Um, I don't think so. I don't, I don't really recall.

Scott Benner 6:09
Okay, so if you're not fasting, it changes. Under point two, type one. I think I'm reading this, right. This is this is why this is also confusing. And your doctor won't help you figure out more, whether you're type two or moody and he, the doctor just says it doesn't matter.

Grace 6:31
Yeah, just basically, if you need insulin, you need insulin. So what the deal was, is that for the last couple of years, because I was diagnosed like 30 years ago with type two, so for the last couple of years, I was at the point where I could only eat once a day, without my sugars going into the foreign five hundreds, okay, so that I was eating once a day, and trying to restrict my food to keep myself from having to go to the ER fees. And so the last endo never tested even never even did a C peptide. And so, that should at least she did, and that's why I got put on insulin. Okay.

Scott Benner 7:18
So you're for you're being treated as a type two, you're using insulin at meals and you're wearing a pump, right. Okay, so your so your, what's your Basal rate?

Grace 7:31
I've got four of them. And hang on, I will tell you, okay. One moment, please. From midnight to 6am, and 1.9, and from 6am to noon on 1.3 to 4.5. And then four to midnight, and point eight.

Scott Benner 7:58
Interesting, it's very interesting. I don't know why it's interesting, but I'm incredibly interested by it. And so, because I've never spoken to a type two who uses an insulin pump before?

Grace 8:09
Well, isn't that interesting? It is. Can I tell you how I got the pump?

Scott Benner 8:13
I mean, did you buy it legally, I hope? Oh, yeah, I

Grace 8:16
did. I didn't even know what a pump was, what it did, how it would be beneficial. And I started listening to the podcast, and you're like, you know, omnipod.com/juice box or whatever. And so I just did that. And then the next time I went to my doctor, she's like, I got your insulin pump. Like they sent me the demo. And I was like, I don't know if I want this or not or whatever. But Omni pod in my case. Like when I filled out the information, got in touch with my doctor, it all went through my insurance. Everything was approved. I went into a follow up with my doctor and she said, Well, your pumps ready. I'm calling it in, and I'm like, I didn't even know I was going to do it. That how

Scott Benner 8:58
magical my Lincoln. Yeah. Well, and you could have said, I mean, I'm assuming at that point, you could have just said I'd really don't want this if you didn't want it and that would have been fine, too.

Grace 9:09
Yeah, but it was intriguing, you know, because I had been listening to podcasts for a while.

Scott Benner 9:13
So you want to give it a shot? Yeah. Alright, so I'm sorry. Tell me again. How long have you had type two?

Grace 9:20
I was diagnosed. To the best of my recollection. I was diagnosed in my early 30s. And the year after the Oklahoma City bombing, I was in that. And so I don't know if like the trauma from that had anything to do with it. I gained 100 pounds in the year after the bombing. And I was diagnosed at the same time with type two and hypothyroid

Scott Benner 9:51
were you incredibly impacted by the bombing?

Grace 9:55
Yeah, I was. I was not in the Murrah Building, but I was like as the crow flies a block away,

Scott Benner 10:02
okay, did you Would you consider you had like traumatic impact from it?

Grace 10:07
Oh, yeah. Yeah,

Scott Benner 10:12
I gotcha. Well, that would be something, wouldn't it? But you also found out you had hypothyroidism? Where was that then being treated?

Grace 10:20
No, I found out at the same time that I was diabetic and had hypothyroid. But did

Scott Benner 10:25
they give you a thyroid medication? Yeah. How well did that treatment go? Did you have results that were reduced your your?

Grace 10:37
Oh, that was a kind of like your wife. That was a many year long fight. And I don't feel that I was. So I'm 58 now and that's when I was 32. Ish. And I want to say that my thyroid was not optimized until probably around 2017.

Scott Benner 11:02
Wow. Because I just looked up that bombing happened in 95. So it took 22 years to get your thyroid straight. Have you considered going to different doctors?

Grace 11:13
I have been to different doctors. This is probably my third or fourth. Endo.

Scott Benner 11:19
Interesting. Interesting. The endo is handling the thyroid.

Grace 11:25
Yeah, now well, they have been Yeah.

Scott Benner 11:27
Okay. And is your TSH, lower now? What is it now? You know?

Grace 11:34
I could look it up, I want to say it's probably around a one or two. But there's a big difference. I was like, consider myself self a thyroid patient advocate for a lot of years because I was so angry about all of it. But I want to say it's between a one and a two. But there's a definite difference when like being in range, obviously doesn't mean anything. But when you feel optimized? You can you can feel it.

Scott Benner 12:05
Yeah. Do you have any hot or cold tolerance problems?

Grace 12:09
I'm not really I have like a little bit of cold tolerance, but it's not from the thyroid because I have neuropathy in my leg. Oh, so I have it from that.

Scott Benner 12:19
Gotcha. When did you start managing with insulin? Just recently,

Grace 12:23
a year ago? I think it was on November 13 of last year.

Scott Benner 12:28
How long? You've been listening to podcast?

Grace 12:30
Since about that time. Right? Okay.

Scott Benner 12:33
So the podcast made sense to you and you started changing things or?

Grace 12:39
Yeah, I somebody I was in a different Facebook group. And somebody just mentioned Juicebox Podcast as I was like scrolling through I saw it. And I was like, it was one of those people that like, how do I even listen to a podcast? Like where is that? How do I get it? You know? And I figured it out and been listening pretty much since the beginning of since I started being on insulin.

Scott Benner 13:03
I think it's pretty impressive that you learned how to listen to a podcast considering before we started recording, you didn't think to turn up the volume when you couldn't hear me. It's a pretty impressive story now. It is in context. Well, okay.

Grace 13:20
Oh my gosh, so.

Scott Benner 13:21
So prior to a year ago, what was your one say?

Grace 13:27
I've had the ones that I can remember, I'm so mad because we just moved a year ago. And my old I keep everything not like a hoarder. But I have this one box that has all my taxes in it from the first time I ever started working when I was 18. All my lab results from the first time that I couldn't remember collecting lab results. And that got thrown away. So that was a little frustrating. But from what I can remember, I had a onesies that were like six, five, this is in the last five years 657585 10 Four when I was diagnosed, but back in the 2000s, early 2000s. I can remember when I was allowed to test my blood sugar that it was in the three and four hundreds.

Scott Benner 14:21
Was it does it sound like to me? I mean, does it it sounds like to me I'm wondering if you think the same like over the last five years, things were progressively deteriorating.

Grace 14:30
Things were progressively deteriorating. And I don't know if this has anything to do with it or not. I've been kind of researching. But in 2013, my husband at the time committed suicide. And so after that experience, I started experiencing a lot of things the the thirst like really Intense muscle cramps. And I, you know, I didn't really think anything about it at the time. But looking back now, I feel like that was like probably a hit to my body as well. So I don't know, do you have

Scott Benner 15:16
any other autoimmune issues?

Grace 15:20
No. And I really don't know a whole lot about my family. My sister had thyroid issues, she had nodules, and she had half of her thyroid, one side of her thyroid removed when she was 18. And the other half of the other side remove and she was 21. And other than that, the only thing that my family that I'm aware of that may possibly be autoimmune is that there is Alzheimer's on my mom's side.

Scott Benner 15:48
Okay. But you think that two big traumatic events might have kicked two of your problems in may be maybe, or at least the timing anecdotally lines up? Yeah, yeah. But you don't? Do you think you have type two diabetes?

Grace 16:09
I really don't know. I find it odd. It's not a common thing that I'm aware of. And I haven't really looked into it that much that people like, get type two, and then their pancreas is burnout, and they need to be on insulin, because a lot of times from what I'm reading is that they're so insulin resistant, and they're making a lot of their bodies producing a lot of insulin, but they can't use it. And so they get on insulin, but that's not the case with

Scott Benner 16:37
me. Yeah, you're just confusing. I'm hoping that by being on somebody might hear this and, and reach out to you.

Grace 16:45
Yeah, every doctor says I'm a complicated case. Yeah, that sounds

Scott Benner 16:49
to me like they don't know what they're doing. Yeah. I think somebody who understood it wouldn't find it complicated at all. Yeah. Oklahoma.

Grace 16:58
I don't know. I just talked like I am. From California, and I was in Oklahoma for 24 years and I'm in Wisconsin,

Scott Benner 17:07
Wisconsin. No kidding. A my brother's here right now. He just flew here from Wisconsin like 36 hours ago. Say bring your deer. He did not bring anything.

Grace 17:20
I'm alignment kugels. He's a boy. He

Scott Benner 17:22
flies very light. He barely comes with the clothes he's wearing. Okay. Why did you want to be on the podcast?

Grace 17:33
Well, I wanted to talk about what I never hear other people talk about, which is what I refer to as the other side of gastroparesis, because when you have slow motility, and you have trouble eating and what have you, for many people that also translate to slow transit of the colon, and then people have trouble going to the bathroom.

Scott Benner 17:59
So you have gastroparesis? How long have you had that?

Grace 18:03
I was diagnosed with that in 2004.

Scott Benner 18:09
How did it present?

Grace 18:11
It presented were all of a sudden, I could not eat and I started throwing up anything that I ate. And it was to a point where even if I tried to just like eat yogurt, and nothing else, like I was trying to find like was there one food that I could eat that I wouldn't throw up? And even if I tried to eat a little bit of yogurt or whatever, I would just throw up everything I ate.

Scott Benner 18:41
Okay? top line, gastroparesis is also called delayed gastric emptying. It's a medical disorder consisting of weak muscular contractions of the stomach, resulting in food and liquid remaining in the stomach for a prolonged period of time stomach contents, thus, exit more slowly into the duodenum of the digestive track. Anyone who just heard me say duodenum correctly. You're gonna want to thank Grey's Anatomy I don't know what it is. I just not to say it. And, and that happens to people with diabetes because of its like neuropathy almost just happening in your stomach. Yeah. Of the

Grace 19:22
vagus nerve.

Scott Benner 19:23
Yeah. Okay. Did you manage your type two at all for the years prior to all of this? How did you take care of it?

Grace 19:35
Here's the deal is that like, a lot of people I hear on the podcast, I didn't get any information like somebody gave me a picture of a plate. Like I think this was right around the same time that they very first came out with nutrition labels on food. And so they were big about the quote unquote the plate of food and You know, just the same picture that they still show today that looks like, you know, a five year old could understand it right? And so, that's about all the information that I got. And I did get test strips and stuff on occasion. But there's, for type two in my case, there was no quote unquote, management it was, you have diabetes, take a pill. And to me, it'd be like the same thing. Like you have hypothyroid take a pill or you have high blood pressure, take a pill, and that's that. There's, there was no focus. What's your blood sugar doing? How often are you getting high? Whatever, it was just like, you know, eat right and exercise and take this pill. And and that's that, I think.

Scott Benner 20:52
How long did you do that? For?

Grace 20:57
Good Lord, the math.

Scott Benner 21:00
Like decades?

Grace 21:02
Yeah, like three?

Scott Benner 21:04
And when you say eat, right, what did that mean to you?

Grace 21:09
Um, I just tried to eat quote, unquote, healthy, normal, get your vegetables in normal, just regular everyday stuff.

Scott Benner 21:19
I'm trying to figure out what that means to most people. Like, if, if I said, you get your vegetables in, and then you said, Oh, I can eat brussel sprouts, if I sprinkle brown sugar on top of them. And then, you know, like, that's how some people think of vegetables sometimes, like They load them up with. They just make them delivery systems for other stuff.

Grace 21:40
It has. It's been i Sorry, I didn't mean to interrupt you. Go

Scott Benner 21:43
ahead. No, I was gonna say is it's it's a very similar thing to when people talk about their blood sugar ranges. And they'll say, Well, I got I got low, so I ate something. And they think that their interpretation of low is everyone's interpretation of low. And they believe that means that that's the correct interpretation as well. But I still hear people talking about how they treat their blood sugar's at 100. Right? I was at 100. And I needed to get up, I'm like, Oh, I think you need to get it down still, but okay. Right. You know, and so there's this, this disconnect between what people mean, and how they present what they're saying, you know, I, I ate well, but if we kept talking, what I find out that that meant that when you went to McDonald's, you got the chicken, like,

Grace 22:29
at that time, possibly, but it's my food has fluctuated so much over the years. So, when you're first diagnosed, or when I was first diagnosed with diabetes, like, I never had to watch anything I did before ever, right? So then you just kind of start learning and you know, be the best you can at certain times, whatever, try to, quote unquote, eat whatever was healthy at the time, which has gone through different things. I mean, back then it was like a low fat thing, whatever. And so over the years, and I don't really remember them coming back to me and telling me you need to try harder, you need to try harder, you need to try harder or anything like that. So you feel

Scott Benner 23:16
hard me? How did you feel physically? Did you feel okay? Or did you did you live a life where you felt like malaise and tired and stuff like that?

Grace 23:27
Um, I feel like the malaise and tired thing and that might have been kind of the thyroid thing, because it's felt like there was a big onset. I felt really terrible. Like I felt kind of normal. It right before the bombing and that year after like gaining 100 pounds in a year, and not knowing where it's coming from or why it's happening.

Scott Benner 23:51
That really sounds like your thyroid. Yeah, that I'm sure that it was. Did you significantly change your activity or eating life? No, yeah, that sounds like the fire right to me.

Grace 24:02
Yeah, I wasn't doing anything any different. So obviously 100 pounds on your frame makes you feel you know, horrible in a lot of different ways earlier,

Scott Benner 24:11
you 15 feet tall. It probably wouldn't be good for you. Wow, that's crazy. I don't think I've ever popped my lips before on the podcast, but I just did it just now. I went wow. Wow, I have you lost the weight since then.

Grace 24:30
Um, it's gone. It's gone back and forth. I've since then, I had lost 125 pounds. And the last 50 of that was because I got sick and was throwing up my food, right. And then right after I lost that 125 pounds, and I was down to like 125 And I got to keep that off for about three months. And I guess because of the weight loss and they were trying to figure out what I was throwing up and everything was before the gastroparesis diagnosis. They decided in their infinite wisdom that I had adrenal failure, okay, because I was losing my hair and stuff because I was losing the weight so fast. So they put me on cortisone pills and told me that I needed to stay on them for the rest of my life where I would die. But I didn't find out till two years later, I think it was that the doctor never even did the proper test to determine that I had Corazon failure. And so I was taking it when I didn't need it. And that put 80 pounds on me gave me drug induced Cushing syndrome, and put 80 pounds on me within like six months. And that's, that's a hard deal to get off of. Yeah, great. So yeah, that's not fun.

Scott Benner 25:54
Wow, you you have run into a number of doctors that haven't helped you along the way. That's terrible. Okay.

Grace 26:05
All right. It wasn't the most compliant patient because of that for a long time.

Scott Benner 26:09
Tell me about that. You mean, did you notice that they weren't valuable to you? And then that didn't make you listen?

Grace 26:14
Well, especially the thyroid doctors, because I felt like that was a big injury with the, with the being on the cortisone and stuff, there was a whole host of problems that came along with that. And so when I would go to a new thyroid doctor, and they didn't want to do like the full battery of test or what have you, I was just like, angry walking in the door, you know, ready to go out? I've had doctors tell me if you're not going to take Synthroid. And that's what I'm going to give you that I don't even want you as a patient. And so I've just like, had to walk out the door before. And so you know, it's it's a frustration,

Scott Benner 26:55
I tried to tell people that that that lovely woman that I had on to do the thyroid episode, Dr. Benito, she was awesome. She's a diamond. And the they're very hard to find, yes, really, really difficult to find someone that can thoughtfully manage your thyroid levels. Not a not an easy, not an easy lift, finding people like that. I'm sorry, because it sounds to me like you were just having thyroid issues. And then they started dumping on like cortisol on to, you know, cortisol into you. And then that just made everything worse and, and masked. And they thought they were treating something. So probably everybody stopped looking at the real issue. Yeah, yeah. And you didn't have the internet back then either. No, right. Huh. Jeez, can you tell me something good?

Grace 27:43
Tell me something good.

Scott Benner 27:45
I'm looking. I'm looking to move this the other direction? Yeah.

Grace 27:50
Where did we want to go with this, you won't go back to let's talk about the pooping thing.

Scott Benner 27:56
I was gonna say, you mentioned poop. And I mean, we're halfway done already. So like, what do you do for a living?

Grace 28:03
I'm a colon hydrotherapist. Now,

Scott Benner 28:05
how do you get into that, and I don't mean to get into

Grace 28:09
that. Get into that because you're sick. So what happened with me besides the the throwing up the food and stuff, and I was on a predominantly liquid diet for, I want to say about a decade, just because I couldn't process solid food very well. And so I had trouble passing food. And in forums and stuff on the internet, people talk about that, but it's not something people really want to talk about not being able to go. So what I kind of wanted to put out there for people is just my story and things that helped me, because I was at a point where the doctors were giving me a gallon of MiraLAX every Friday night to try to go. So it was like doing a colonoscopy prep every Friday night. And so I would go and then that stopped working. And they've had me on a bunch of different laxatives that start working and they have me on some newer drugs Linzess ama teas and my glucose is 123 and it's beeping at me. And those didn't work. And the only way that I could get stuff out was like those old grandma like red rubber enema bags. I was doing. I go to work, come home, cook dinner, clean the house and then I go to the bathroom and I would they hold like one and a half, two quarts, something like that. And I was doing anywhere from one to 15 of those a night, every single night and succession trying to get something out of me. And my stomach would blow up like eight inches like I'd have to bring different clothes to work to wear because I just couldn't get stuff out. And so that was a weird way to live and they wanted to But when they diagnosed me with gastroparesis, and I couldn't go to the bathroom, it had gotten to the point where they wanted to give me a feeding tube and ostomy bag. And I didn't want to go that route, the ostomy bag really scared me. And so I just decided to go. I was like, if I can't eat, then I can't eat. And I'll just like, try to get nutrition any way I can. And so I'll just like, make my own juice and just juice and just be on a liquid diet and live like that. And I did that for a couple of months. And that changed a lot of things in a positive manner for me, but it did not help me go to the bathroom. And so it wasn't until, like 2017 that I tried colon hydrotherapy. And that worked. And I did quite a few sessions of that. And what that did for me, because the last the last five years from like, let's see 2012 to 2017. And I got to the point where I never even had an urge to go anymore. It was just completely absent. And so I started doing colon hydrotherapy, just out of desperation, which is basically kind of like a half hour enema. And after I did a number of those, probably like seven of them in a fairly quick order. It like, kicked in the peristalsis. And my colon and I started going to the bathroom every day.

Scott Benner 31:30
Alright, so hold on one second. How does this work? Now in my cartoonish mind, we just pump the water in my mouth, and then it just blows out the other side? I'm sure that's not what happens. So the water goes in your butt. Is that correct? How much how much water in your butt.

Grace 31:49
It can be up to 12 gallons. That being said, it doesn't all go in at once. It's a process. Like if I did an enema with just one of those bags that only gets like your rectum. And so with colon hydrotherapy, it goes in your rear end, and it goes throughout the entire large intestine, and just cleans everything out and evacuate everything out there.

Scott Benner 32:16
So this is not much different than if your ear is clogged and they get water behind your ear and fill up your canal and then it pops out the wax.

Grace 32:23
Mm hmm. Got it?

Scott Benner 32:25
Are there any reasons why a person wouldn't want to do this? Is it dangerous?

Grace 32:31
I'm not dangerous, per se. There are some contraindications for people with diverticulitis. People that have had any recent surgeries people with Crohn's and Ulcerative Colitis.

Scott Benner 32:51
So anything that's going wrong back there? Mm hmm. Yeah. So like, Yeah, okay. And you don't want to block your butt? Like, right there. Right.

Grace 33:01
Right. Or if there's, you know, any kind of bleeding or infection or anything in there. You don't, you know, like, you want to have a healthy column? Because I don't know. I don't know if that spreads it around. Or, you know what I'm saying? But

Scott Benner 33:15
how do you figure that out before you fill her up?

If you're using insulin, knowing what your blood sugar is doing is monumental. Is it going up? Is it going down? How fast is it doing that? Maybe it's steady? Is it 96? Or 150? Is it to 10? Or 183? Well, you don't want to check all the time with a meter. And even if you did, even if you had a great meter, like the Contour Next One. That meter just gives you a look into a moment, right? I tested my blood sugar at 9pm. And it was 140. Great. That's good news. I know my blood sugar's 140. But is it moving? How fast is it moving Dexcom can tell you that with the Dexcom G six dexcom.com forward slash juice box, use my link. And you may be eligible for a free 10 day trial of the Dexcom G six, you can find out what I'm talking about how great it is to know the speed, direction and number of your blood sugar at a glance. I will pick up my phone right now. It's an iPhone, but you could do this with an Android as well. I see my daughter's blood sugar is 130. At the moment, it's very steady. Actually. We just did a pump change recently. And we're just kind of bringing her blood sugar back down. You know how after a pump change, you might need a little more insulin here and there. Anyway, you know about that point is we're watching it right now. We're making boluses that are thoughtful and we're moving your blood sugar back to where we want it. This is all made much easier in my opinion by the Dexcom G six again, Dex comm.com forward slash juice box you will not regret checking out the Dexcom I'm gonna head right now to N pen today.com I n p e n t o day the microphones blocking my keyboard.com in pen today.com Oh, look at that. Here's the website, nice graphics, little video running very nice. Here's what you get within pen, you get an insulin pen. That's what you need, right? If you don't want a pump, and you want an insulin pen, wouldn't it be nice if it did some things for you? Not just the little Jabby thing with insulin in it, but had some other stuff? Like how about if it had a dosing calculator, or carb counting support a digital logbook? Or the ability to remind you when you needed a dose of insulin? A dose reminder, you say that sounds wonderful. How could it insulin pen do that Scott? Well, that pen that said insulin pen, the ink pen connects to an app on your smartphone. Oh, wait a minute. Technology you say That's correct. That app gives you a look at your current glucose level. dosing calculator, active insulin remaining glucose history reports, Activity Log dose history meal history. And of course, we just said current glucose. All right there on one screen connected to your insulin pen. Now you're interested, hear it in your voice? Yes, I hear your voice in my head. No, I'm just kidding. I don't hear you. But anyway, hey, listen, here's a little offer that in Penn has. Now this is only available to people with commercial insurance, of course Terms and Conditions apply. But you may pay as little as $35 for an NPN because Medtronic diabetes doesn't want cost to be a roadblock to you getting the therapy you need. And within Penn's access program, you may pay as little as $35. In Penn today.com, links in the show notes, links at juicebox podcast.com to Dexcom. In Penn, and all the sponsors in pen requires a prescription and settings from your healthcare provider, you must use proper settings and follow the instructions as directed, or you could experience high or low glucose levels for more safety information visit in Penn today.com.

Grace 37:26
For myself, or other people just

Scott Benner 37:27
talking about you Yeah, I don't know how they're viewed. Okay. Like, did you go to a doctor and say, Hey, I'm thinking of blasting my butt full of water. And I went off, it's okay.

Grace 37:36
No, that was just kind of like, that was kind of like an internet thing. And just meeting

Scott Benner 37:42
other people who had had success with it. Yeah, I say, okay. All right. So you did it. And not only did it help it help, I mean, because he was probably very relieving to get everything out, I would imagine. And then you started going more regularly on your own?

Grace 37:57
Yeah, I didn't go for predominantly I like I might have an urge once a month to go for, like the first. I don't know, seven years or so. And then like the last five years, I didn't have any urge at all. And then I did this several times. And then I was able to start going on a daily basis. I didn't always completely empty but at least I got stuff out. Yeah. And I didn't find out until this year, when I moved to Wisconsin, that I've had several operations for endometriosis. And evidently, there's a thing that they can do. My doctor my gastro referred me to it is called visceral mobilization. And that is where they just feel on your stomach and they press down. It's a form of massage, and they could feel adhesions. And I had severe abdominal adhesions. I've had five abdominal operations. So all of my insides are also besides the gastroparesis, all of my insides are stuck to each other. So it's kind of like if you went in your gut and like somebody put a spider in your gut, and it weaved a web over everything. So stuff couldn't move.

Scott Benner 39:10
Can they fix that? Well,

Grace 39:13
they're supposed to be able to fix it, like they go in and they break it up, they just press on where they feel the tightness, and they release those adhesions. And I was like, Oh, am I going to bleed internally or like what's happened and if you're, I call them the gut rep. Or if you're ripping stuff up inside of me, and he said, there's not very much blood tissue and that kind of stuff. And he said, it's kind of like if you took scotch tape and wrapped it around your hands with the sticky side out and then rubbed it on the carpet, and then tried to stick the tape back together. But unfortunately for me, they also told me I just found this out. The endometriosis doesn't necessarily stop when you get all your woman parts cut out, which I had done. You got a hysterectomy? Oh yeah, when I was 32 Um, so I guess that can still keep growing regardless. So for me, instead of being able to get the massage and and get the adhesions tore out, I have to do it for maintenance. And that made that also made a huge difference in being able to go to the bathroom and or have your belly

Scott Benner 40:18
massage. Uh huh. Yeah, it's done by a doctor is done

Grace 40:23
by physical therapist. My, my gastroenterologist referred me for it.

Scott Benner 40:28
Does it hurt while they're doing it? Yeah.

Grace 40:32
It's not really bad. It's not anything that like, lays you out or stops her stops you from doing your daily business or whatever it kind of feels like after you're done sore, like if you had done a like a hard, hardcore workout, like core workout. Do you have to go to the bathroom right after he finished? No, no. Okay, now, but after he started ripping stuff apart in there where everything was stuck together. I was able to go from like once a day to sometimes three or four times a day.

Scott Benner 41:03
Interesting. How often do you do the massage?

Grace 41:07
I still have to get it probably once a week, once every two weeks just because I'm kind of messed up inside. So

Scott Benner 41:16
does your insurance companies that do hate mail?

Grace 41:19
Well, my insurance company this is interesting. So I happen. I still got stuff growing in me and causing these adhesions, endometriosis, or whatever is still growing in there and causing issues. And so insurance wants you to get better. They want you to progress or they if you don't progress, then they don't want to continue covering your treatment. So I had to go outside the insurance. And I have to pay cash to get this done. Because the insurance will not allow me to do it for maintenance. Oh, yeah. So it's just you know, it is what it is. Jesus. Why would that? I don't know, why did they sometimes cover some insolence and not? And what you know what I mean? It's just

Scott Benner 42:09
intermediary. So this is interesting, because it is like an inflammation condition, but it's not characterized as autoimmune.

Grace 42:15
No, yeah. And I looked at it's interesting. Yeah, nothing with me as autoimmune. They all say I'm a complicated case.

Scott Benner 42:24
Yeah, that doesn't seem comforting at all. Grace, you've taken me a number of different directions. I know. It's causing me not to be able to find my, my, my North here. My compass is just spinning in circles. Are you okay? Yeah. Generally? Good. You think of yourself as being well?

Grace 42:49
Well, as well as I, you know, it is what it is. But yeah, for the most part, I will tell you, you know, and I've mentioned this probably on the Facebook group before, but I've had such a weird thing from all the different doctors and so many different things that the doctors didn't know what to do with or whatever. And I went through a period of time where I really didn't like, have any hope about things. And my quality of life was kind of down and the podcast from everything I've been through in the like, the last 30 years was the the only thing that gave me not only hope, but like tangible hands on experience that actually made a difference. I'm glad. Yeah. It was huge. Because I was like, once they told me that the diabetes thing with the insulin thing, I was like, I don't want nothing else. I can't hang him, you know? Yeah. And now it's not like that big of a deal.

Scott Benner 43:55
Well, you're a one seat. So you, you came into the group like a wrecking ball, like in a like a delightful, sparkly wrecking ball. You were just like, I'm here. I love this podcast, like you were very, super excited. I appreciate it, actually. And so you're just saying that you got management tools from the podcast right at first? Absolutely. Yeah. And that was a big change for you a big difference.

Grace 44:16
It was huge change because I didn't, anytime I had hope in the past for something. There was never any resolution, there was never any, like, how to go forward, how to find somebody to help me or how to help myself. You know, it was just like a bunch of roadblocks and dead ends until the podcasts, okay? Because I really didn't know how I was going to deal with the insulin because in other groups, I had run across things where people were just, it was fear based, you know, and the advice you get was fear based things like don't ever drive a car if you're under 100 or you know, just craziness and then I found you and I found the Facebook group and it just It really helped. I mean, my last one was a 6.0. And was it really? Yeah, so I started out 10.4 A year ago and then I was a 6.0. I had got down to a seven I think it was on MDI. And then I switched to the pump and that pump to the Omni pod, and it's, I'm glad expect to be probably in the fives next time

Scott Benner 45:30
and you're managing that well with gastroparesis too.

Grace 45:33
Yeah, and I guess it's, I guess it's a, you know, a combination, because there's gastroparesis, and then there's the adhesions, because the guy that did my massage, he's tells me things like, I didn't know any of this, that your stomach has to turn, like a quarter of a turn every so often to digest your food. And my stomach was attached to my ribcage and attached to my diaphragm. So it couldn't move at all. So that has, so there's like a complication between, you know, and then all the rest of my organs are like that.

Scott Benner 46:11
So you definitely have gastroparesis, but additionally, the endometriosis and the scarring is making things worse. Yeah, got it. Jesus. Is there any? Now it's a stupid question. It's got nevermind. I never.

Grace 46:29
I love the stupid question.

Scott Benner 46:30
No, it's such a bad question. I'm not going to ask it. I know the answer already. And so does everybody else. Like just I don't even know why it popped in my head.

Grace 46:39
Okay, I can, I can eat I've been able to eat better since I've been getting the colonics and eaten better since the visceral mobilization massage. So it's made not only has it made a difference in the output, but it's, I'm not on a predominantly liquid diet anymore.

Scott Benner 46:56
Yeah, so you're eating solids, but, but you're still using the colonics to make sure that you're clear. Yep. And you give them to yourself, right?

Grace 47:06
Well, I can now yeah, now. Now that I'm doing it for a living, you know, it was it was, this is how it can be for some people. So if you're, like, if you can't go at all, and nobody can help you, and it's severe enough that you have to get it, then you know, you I'm talking about myself. If I was having a really bad flare up, and things weren't moving, it could cost me anywhere from four to $700 a month to go to the bathroom. So it was more than my mortgage. Oh my gosh. So that's why I and I had an opportunity to buy a business. So I did.

Scott Benner 47:47
So I have to ask you a couple of questions that are gonna be silly. But I need to know these things. After we put the water in, don't come back out the tube.

Grace 47:59
Hey, well, the tubes really small like the one I have the tubes really small the size of a pencil. So it just goes in and the water shoots in and then the waste in the water come out around it all that happens all at the same time to where it's like a giant reclining toilet. Okay, so it just goes down out the sewer.

Scott Benner 48:21
I'm going to Google hydrotherapy chair, right? Is that what I want to do? To see a picture?

Grace 48:30
Google colon hydrotherapy open system?

Scott Benner 48:34
colon hydrotherapy? Open Look at this. Hold on a second. Okay, do people generally are they super embarrassed the first time?

Grace 48:56
Some people are I get a lot of people that come in because they're they're having issues or they're severely impacted and what they give them at the hospital doesn't work. So they come in to see me to, you know, get stuff out. So I have people that are excited to do it. I have people that are mortified. You know, it just kind of runs the gamut. I have a lot of sick people. And then I have a lot of people that just are kind of, for lack of I don't know how to say this politically correctly, but they're like health freaks. Right? Right. And I call them my little moon children. Like they like to come in and get it done when the moon is full and whatever, you know.

Scott Benner 49:36
Alright, listen, I don't question people. I but I have questions for you. What's the weirdest thing you seen? It's a hemorrhoid. Right? A huge one. What is the

Grace 49:45
I don't the way that that chair is designed. I don't see people's parts. Wait, like the one that I have. The one that I have is the nozzle is self inserted. So somebody lays down on This, they insert their own nozzle, and then they cover up with the drape and then I walk in. So I don't see any of that. There's another system where the nozzles bigger and it has an intake and outtake. And then you kind of turn on your side and that one the person actually like inserts into you and holds it in there the whole time. So there's that's called a closed system. And I don't do I don't have that one. Well, I don't I don't see anything other than what's coming out. There's a clear tube that you can see what's coming out of you.

Scott Benner 50:31
How strong is the exhaust fan in the room? I mean, is it like a jet engine? Oh, there's

Grace 50:36
no odor at all. Wait, stop

Scott Benner 50:38
it. There's no odor. How could there not be any odor dust and the poop will come out?

Grace 50:43
It does. But it's encased in water and it goes straight out and into the sewer. So there's no smell. You? Yeah, your poop

Scott Benner 50:51
adjacent? You're not really? Yeah. Well, that's a strong title for this episode. It really is. Oh, I just thought for certain your most of your day was spent like ah,

Grace 51:05
but no, it's just like, like, it's just like being on a big recliner. Like if you were just going to sit back and hang out on your phone and just relax. That's kind of like what it is, except for their stuff going on? How long does

Scott Benner 51:20
it take the process? How do you know when you're done? I guess clear water.

Grace 51:25
Yeah, pretty much clear water. It goes by time it's like on the average, it's like 35 minutes. And you can kind of see when it gets to the end because it'll change from like stool into little pieces of food like where the small intestine releases its food into the large colon. It's like little pieces of food because it hasn't turned into poop yet. And then the water can change color on some people too. Like instead of brown it'll be yellow green or kind of a yellowish green. And that's like the digestive enzymes and the bile that are fed through with the food and

Scott Benner 52:00
what was my next question? Has anything ever come out that surprised you Matchbox car.

Grace 52:06
There are stories. Now I haven't personally seen this. But their stories. So the the gentleman that invented the device that I use, told a story of two different people in their 40s. And that one of them passed a Barbie shoe and one passed a Lego that they had when they were kids. So I don't know where that would stick in you and like why would not show up in a colonoscopy or something unless they never had one. But that's that's the only stories that I've heard.

Scott Benner 52:37
All right. No chunks or anything. Um, so for people.

Grace 52:43
Nothing other than what would regularly come out.

Scott Benner 52:46
Nothing that comes out where you're like, wow. Nothing like that. No, okay.

Grace 52:51
It's just pretty normal.

Scott Benner 52:53
I got you. What if I know you're not a physician doing this? Right? Like so? No, absolutely not. Yeah. What if like, you see blood, you tell him like, Hey, I saw blood?

Grace 53:02
If I did, I would, I would stop it and refer them to their doctor, but I never have like, they have to fill out a questionnaire and all of that. And as far as they know, they have to be, you know, healthy and not have any complications.

Scott Benner 53:14
insurance doesn't cover this as a cash business. And it's good. Is it going well for you? Are you like? Like, are you like, wow, I'm glad I started this like not only for your own personal like sanity, but like financially? Is it going? Well?

Grace 53:28
It's okay, I just do it part time. And if I did it full time, maybe it'd be better, but it's fine. Yeah.

Scott Benner 53:34
out of your garage, though, right? Away hilarious. By the way, if you were like,

Grace 53:40
it just made me smart. They kind of do that sometimes. In Michigan, Michigan. Yeah, I've had some people in Michigan tell me there's this thing called a Woods method. And people get like a five gallon bucket like from Menards and put it on a big piece of board. And then the people lay like kind of on a massage table. And there's like, an enema tube and they just do it like, like that. And like my device is FDA cleared. But you know, their standards, we have to adhere to one stuff, but I guess people get desperate or people just do things on their own sometimes. And so that's the thing. The woods method you could look that up.

Scott Benner 54:21
I'm not drawn to do this very frequently. You hear on the Juicebox Podcast should be considered advice, medical or otherwise, please, always physician before making any changes to your healthcare plan or sticking anything in your butt. Like think that's really important to say. I think you're gonna be the first one to get to different. I'm gonna have to say but in your disclaimer when I when I edit this show. I want to say this right now. I don't know if any of this is a good idea. Okay. And Grace is lovely. But she can also be a kook I have no idea. Right grace?

Grace 54:54
Well, yeah, I can absolutely be me. I am.

Scott Benner 54:57
Yeah, I'm just saying I'm not telling you to put water in your mouth. But, but grace is just telling you what helped her. That's all I just need to be clear about that. Because it sounds insane. And at the same time, I can understand how it might be valuable except you're it really is. Your it's for when you're in a situation where you just don't have another answer. It's not like you can just keep ignoring it till your stomach explodes, or you have to do something.

Grace 55:22
So, but you're either doing it yourself. I mean, you know, if you get to a certain point, you're either doing it yourself or seeking out somebody to do it for you. Yeah. Because it has to it has to go somewhere. And you're not going to hear a lot of people talk about this, but I guarantee you, it's a it's a thing that people do more than I think it's a thing that people suffer with not being able to go that nobody talks about. Yeah. And it's, it's kind of a mortifying thing. Like, even if you're not, like at a place to get it done. But if even if you're at home alone, doing it, there's nothing more more more, more more terrifying than, like trying to get stuff out of you. Because you can't like there's no shame after you deal with that for a long period of time.

Scott Benner 56:09
Great. You're gonna get me to say something here that I hold on. Let me let me get myself ready for this. Metamucil has changed my life in the last couple of years. Yeah, okay. But it can't just be me because there's a Metamucil shortage right now.

Grace 56:28
Well, and I will tell you that sometimes that works. And then some people that are impacted by it makes it worse. Yeah, it can make it worse. Yeah, if things aren't moving, and then you put something in there like that. It can make it worse. And I've gotten in flux from both of them. I've done better off when I've had fiber and then I've like, shut down when I've had fiber. So

Scott Benner 56:47
Right. Yeah, I'm not saying I'm just so right here. I shouldn't say this to people because I don't want anybody to know the truth. But there's a Metamucil. You want the OG Metamucil was sugar, but no flavor. It's like, it works so much better than, like the orange stuff that they make or like the flavored stuff, it is not easy to learn how to drink the first couple times. It's tough, you know, because you're basically somebody basically took dried weeds and put it in a glass of water. And it liquefied long enough for you to get it down. Like seriously, if you put the stuff I use in water, mix it up, and don't knock it back immediately. If you wait 30 seconds. It starts to like gel. And like you know, it's Yeah, starts to take shape. Like so you need to get it in quick quick. Know what the spoon but oh, god that just turned my stomach. I can't believe that's the first thing that made me nauseous in this conversation. But because I know what it looks like, I guess. But like when you go to the stuff like even the orange stuff. It's different. Like it just isn't as good. It just and you can't buy it anywhere right

Grace 57:59
now. I did not know there was a shortage on that.

Scott Benner 58:03
And I'm saying I know COVID and all and you know, we a bunch of people went home and didn't come back to their jobs and stuff like that like that. I understand. But I'm telling you like something like that for there to be a shortage says to me that a lot of people buy it.

Grace 58:19
Well evidently sell it or unless unless they're having a shortage making it.

Scott Benner 58:23
Yeah, but still. Yeah, you know what I mean? Like, how much how many people have to buy Metamucil before you can't find better? And I'm talking about like, legit, like, like, you know, like they're selling it on like eBay like it's like the black market. Really? I wouldn't lie about something like this. I have no reason. You gotta like, I'm gonna tell you that. You can get a big jug of it for 19 bucks, usually. And I just usually order it from, you know, the guy that made the books, Jeff Bezos, right. I usually just get it from him. Does everybody remember that? Amazon started as a bookstore. Anyway. Oh, I

Grace 59:06
didn't run. I didn't know. Are you serious? Oh,

Scott Benner 59:09
I know everything. This is why the podcast is fantastic. Jeff Bezos Bezos, Bezos pieces, who cares? I don't really care. He started Amazon as a bookstore. The first thing Amazon killed was like Barnes and Noble

Unknown Speaker 59:25
really Yeah.

Scott Benner 59:28
And now it's a place I get Metamucil and other things like when I need a microphone I just go on in mean like what am I going to do? So So you go on there on there. Oh my god. What am I 57,000 years old? You go on there the internet the thing I went on the box and I told it

Grace 59:48
Amazon sound water come up my nose when you just didn't.

Scott Benner 59:51
Listen, water comes out all your holes. So let's not be surprised by that grace. So, you know, just now I thought I am funny

I don't even know if I'm funny. I just think my brain is working too quickly. So anyway, this this Metamucil unflavored, like, with sugar, you can't even find a listing for it right now and I know its course, with sugar unflavored that's the one that legit works, right? Like, you put it in. And the next time you go to the bathroom, these beautiful little poos, let's call them nerds, okay, or turn, whatever you wanna call them. I have a glistening sheath across them as if God wanted them to come out of your butt. Right? You just wait till you go. You wait till your body says I have to go to the bathroom. You go, okay body, and then you walk over to the bathroom. You seat yourself, and then this will happen. No, no big deal. It's over. That's it takes two seconds. I'm going to tell you right now, I've never done this. I promise you. But I'm not 100% Certain you have to wipe when it's over. Like that's how well it goes. Right? They just come like flying out. They're self contained. It almost looks like somebody packaged them for you so they could come out. Absolutely legit. It's, well,

Grace 1:01:14
if I can find it, maybe I'll never

Scott Benner 1:01:16
find it. Because I bought it up completely. You black market Metamucil. There's a very, I finally found, like the picture of it on the Amazon. I've been talking the whole time so that I could find the picture. So everything I just said I was making up while I was Googling, and there's no ability to purchase it right now. No price on it. My wife a trip in trying to prove that she she loves me because we've been married a long time. So I can't be certain you know what I mean? Right? I know, I know. Like, just be here because like the bills get paid. And she's like, Yeah, it's easy, you know, but um, but she has a like a thing set up on her phone. Every time it comes back into stock, she jumps on and buys me one. We are now overpaying for it by 100% to get it Oh. And that's 28 ounces used to be $19. Now 28 ounces is $40. And until you've pulled with it and food without it. You're not going to know how valuable it is like she I'm very cheap grace, I think that comes across on the podcast. Like I'm incredibly, like, I hate spending money in a way that's hard to put into words. You know, like I'm wearing a t shirt now that I think is from the 70s. And so she gets embedded than he was I found a Metamucil for you. I ordered it. I was like, Oh, she was the only one I got an alert. And I jumped right on. And she I was like, thank you. When will it be here? And she told me the date. And then we you know, kind of went back to our business. And then she goes, You didn't ask how much it costs? And I said I don't care. Oh, yeah, I was like, I don't I don't I honestly don't care what you paid for it. Like if you if you sold one of the children to get it. I mean, maybe I'd start getting concerned around there. But if you could have got a case for it for like Arden, I would have made the swap easily. It just, you know, like it's that it became that important in my life. And I don't know what's up with my system, you know, or how I eat or how I don't eat or whatever. I mean, let me be honest, I had a vegetable once in the 80s. Okay, right. So I don't eat a lot of vegetables. And I realized I could, you know, I could probably help that. You know that way, but I don't have it in me. I'm like a 12 year old I eat like a child. So I don't I don't want I don't want your damn vegetables. I don't know why. I might say I was like they have a roach. I'm literally a child in my mind. I don't like the way vegetables feel in my mouth.

Grace 1:03:44
Yeah, I heard you say that.

Scott Benner 1:03:46
I'm not kidding about it. Grace. I didn't just say it to be funny. At Green Bean makes you feel like you've just grabbed my uvula. And like pulling on it. You're like vomit vomit now vomit. It's a green bean, you know? So, I mean, I can cook them. I'm happy to make them for people. I'm not bothered by them. I don't care about the smell. Submitted I go in my mouth. I'm like that I make the noise that I assume you make when you work. They

Grace 1:04:16
probably did it Mike or somebody try to talk you into yeah brussel sprouts or something

Scott Benner 1:04:24
that he didn't send me the recipe. Oh, you know where he's at right now. He's on a he's taken to Texas. He went down to Texas. He's driving around to hit the top 50 barbecue joints in Texas.

Grace 1:04:36
I know. I saw that like last night. I was like in that a tray. You

Scott Benner 1:04:39
better get some brussel sprouts too or

hey this is what the podcast is coming through. We're now shouting people out directly, just one person at a time. But no, seriously, I what I'm trying to say is I know how important it is to go to the bathroom. I clearly don't have any of your problems. And just the loss of Metamucil. In my life, like, I mean, you should have saw me. I was in like, I was in the kitchen. And I was like, Oh, I'm out of Metamucil. I didn't know that happened. And, you know, I've only got a couple more spoonfuls left. And I just like, you know, like a spoiled person. I just pull out my Amazon app, and I go to order it. And it's like, they don't have it. And I'm like, no, no, wait, we wait. Yeah, that's gotta be wrong. And then I just drove immediately to Walgreens, and then to CVS and then the Rite Aid and then I just started driving down the street to different and I it nowhere.

Unknown Speaker 1:05:32
Just that trip, man. Yeah, it's a trip

Scott Benner 1:05:35
trip and me right up on the toilet. It's what it's doing. So yeah, I mean, it's just that I know how important it can be. And I don't have all the medical problems you're talking about. So I have a really hard time even imagining what's happening to you. It sounds terrible. Like, I'm not gonna lie to you like it's a sad story.

Grace 1:05:51
Like it's hard. It's, it's, it's a horrible way to live. I mean, it's better now. And thankfully, I found stuff that helped out but you know, yeah,

Scott Benner 1:05:59
good for you. But well, wait a fight for yourself, because you could have given up a number of different times. Oh, yeah. Is there anything we didn't talk about that you wanted to talk about?

Grace 1:06:11
I don't really, I don't really think so. I think that we kind of covered everything and probably more than I even intended to cover, right?

Scott Benner 1:06:20
Listen, you should be covering those people's butts in.

Grace 1:06:23
Hey, they're covered. They got a lovely drape. It's sky blue. Is that disposable? That's right. Oh, abs everything's. I gotcha. Could you imagine if that stuff I could think back in the day that it they used to have to like autoclave it, like dental instruments and stuff because everything had to be sterilized right before it was plastic,

Scott Benner 1:06:43
you know, I'm saying disposable. Like, secondhand too, but my but right? That seems wrong. Did you claim I remember getting a tattoo and I was like, you clean that, right? It's like, Yeah, I'm like, and I'm looking at him. Like, he looks high. Like, I trust this guy.

Grace 1:07:03
I feel like a lot of them look like that.

Scott Benner 1:07:06
I'll tell you a beautiful tattoo. But you know, she drank vodka through the entire thing. And there's a moment where you're like, I'm making a poor decision right now. I know.

Grace 1:07:14
Right? Exactly. A permanent one or semi permanent. I guess you know,

Scott Benner 1:07:18
the only thing I really I thought this was great. The only I'm a little disappointed you were getting ready to talk about how terrific I was. And I cut you off. And now I'm regretting that part. Oh,

Grace 1:07:28
well, you are terrific.

Scott Benner 1:07:29
I'm just teasing.

Grace 1:07:33
I can expand on it. I don't know.

Scott Benner 1:07:35
You're really your your joy online. So thank you. Oh, well, thank

Grace 1:07:39
you. Yeah,

Scott Benner 1:07:40
no kidding. You really you add something to the to the site. It's it's hard to put into words. But there are people that come to mind when I think about that. That are and you're one of them. So I you have great enthusiasm, like you'll like like, we'll post something in the middle of the night. It's like a five year old episode. And like this episode, so good.

Grace 1:08:02
They're also good. I just, I don't know, they didn't get me excited. And they keep me. I'm glad to keep me wanting to keep I mean, I want to go for it anyways, because I want to be healthy. And I'm 58. And if there's complications, I don't like have time to play around. Right. But it's, it's wonderful. How did

Scott Benner 1:08:21
you? I appreciate that. How did you think this episode went? Do you think somebody will like this one?

Grace 1:08:27
Well, somebody out there might, you know, you never know, because it's such a private thing. You know, you never know who's dealing with what so I just figured I'd put it out there and say a couple of things that helped me in case somebody else is suffering because it's a real quiet thing. It's, it's like such a private thing. Like even for my business. To get somebody to put a review up, like five star, nobody, I mean, unless they're like, you know, like, this is their health thing in life or whatever, you know, like they're like super clean, healthy eater, but uh, you know, I do this just because, but for people that are sick and stuff, they don't even want to click like a five star button or whatever, because they don't want their name associated with the fact that they had this done like that. Anybody that now

Scott Benner 1:09:15
I hadn't considered that, but I'll tell you is a person who who has a podcast with like, you know, four and a half million downloads, and only 1000 reviews, but, but in email in private emails, like there are people who will say this, and you should question all of them. You should question me when I say it too. But I mean, I hear from 10 people a day. And at some point in hearing from them, the the concept of you've saved my life comes up in like some wording or another and it took me seven years to get 1000 reviews for my podcast. Really? Yeah, it's not some it's so it's hard for people to do in general is what I'm saying. Like forget that. It's about they can't poo You know what I mean? And I'm now you're making me wonder how many people don't want people to know that they have diabetes? And what?

Grace 1:10:06
Well, I don't know that it's that Scott because it's like, you know, twice a day I hear, you know, on the podcast and, you know, leave a review, whatever, right? It took me a year, I didn't find out till last week, how to leave a review on iTunes,

Scott Benner 1:10:24
and nobody anymore.

Grace 1:10:28
I know. That's why I got it. And I was like, I got an Apple phone because it works better with all the, you know, the Omnipod, and the dex and all of that. And I was like, it also works better with iTunes, because we can't get on iTunes with an Android. Right? And so I got on there. And I'm like, well, where's iTunes? Like, there's a place for it, you know, and I put it in the podcast, and it just came up like on an Apple app. And I was like, now I'm all confused. I don't know how to leave a review. I don't know what's going on. Yeah.

Scott Benner 1:10:53
On an iPhone, you just people problems gonna say you sound like you're 1000 years old, right? Just stop touching the buttons and listen to me, grandma. Okay, so it's Apple podcast is the native app that's on iPhones. Yeah, it's a real good app. And it's a solid way to listen to a podcast. So you open that up and searched for the show and follow the show. They used to call it subscribe. It also doesn't help that they change the wording all the time used to be No, subscribe. Now it's follow. And you follow the show? And then I think you scroll down and you can read it.

Grace 1:11:24
But like, yeah, I just yeah, just finally found that. Yeah.

Scott Benner 1:11:28
And it's fine. Like, look, I'm not gonna lie to you. Like, if you don't like the show. I mean, don't read it, please. Like. But, I mean, that would be weird. I mean, there's plenty of things that I've tried that I don't like, and I don't spend time running around making sure people know, I didn't like it. It I think that's a specifically strange decision to make. But whatever, you know, it's fine. I always just say to people, like, if you like the show, and you can say something about it, that you think will help other people want to listen, right? They can, you know, have the same experience, like leave a review. And you know, and then the truth is that I have that I get to use the reviews. It's like social media posts. And, you know, because I mean, or, or the other benefit is when people go to the app, and they're trying to make that decision, like, should I listen to this, they're going to scroll and look at the reviews. You know,

Grace 1:12:15
I'm really shocked that you said you have what around 1000? Yes, shocks me,

Scott Benner 1:12:19
it will sell well, it's not that easy to I actually, it's a really big number, like I'm proud of it. It's just it's hard to get people to like even like as an example, right? The What can I say? As an example here? Oh, okay. All right. T one day exchange. It's a great example, right? There's this short survey, if you're from the US, and you have type one year from the US and you're the caregiver, or someone from type one, you can take this survey in less than 10 minutes, that really is beneficial for people living with type one diabetes, and it'll help the show like, like, no, like, let me just be clear, I will get money if you complete the survey, right? And people are always like, the PAC is so valuable. So I mentioned it, and I have to generate four clicks to that link, just to get one person to finish the survey. And so and that's a good number. Like if you talk to people who do that kind of business, one in four, like, like a one in four completion rate is, is insane. It's a really great number. But that's how hard it is to get people to do things. And I understand it, too. I mean, there's things I supposed to do yesterday, I didn't do either, like I'm not coming down on people for it. I'm just saying it's the nature of, of the situation. So yeah, you having trouble getting a review, I think is normal, and then compounded by, like you said to people probably don't want to be associated with it.

Grace 1:13:50
Right? You know, that's private thing,

Scott Benner 1:13:52
which is a shame a little bit too. It's the same reason. I have so much trouble getting Type Two diabetics on the show. I think it type twos are not very public about diabetes. It's interesting, if you think about it, like there's a vibrant community around type one diabetes, but it doesn't exist around type two. And those people could help each other so easily. But you can't get them to talk.

Grace 1:14:15
It doesn't exist. I made a post about this one time, but I feel like it doesn't exist around type two, because they're such How do I put this, there's such an emphasis on there's a negative connotation that they brought it on themselves. And that even if the people don't internalize it kind of a shameful or whatever, it's like it's put on them. And like for me, something happened in my beta cells a long time ago. And you know, over time, and I see that a lot of times that that's where it starts for type twos is that there's some kind of beta cell issue that they're not functioning normally or whatever. And everybody just, like puts it on it that it's your fault, you got diabetes, because you ate a Snickers bar, you got diabetes, because you gained whatever amount of weight or there's something physically going on inside the body. Right? You know, and

Scott Benner 1:15:21
shame because you're right, because I'm guessing that the fear is that people are gonna think I did this to myself, I'm a slob I'm, you know, they're gonna think I'm overweight, they're gonna think all the things that people think when you hear type two diabetes, right? Like the things that people that pop into people's minds. I'm not saying that they're right, I'm just saying that that's what happens. And you don't want to be associated with that. And so you keep it to yourself. Right? And but the problem is, is that by keeping it to yourself, you don't let the information get out, that could help you really manage better Live better avoid things that you're dealing with now, you know, etc, etc. So

Grace 1:15:56
well, the other part of that, though, is that we're not taught any type of management, we're not taught how to make it better other than go home and eat right, like, I wasn't allowed to test my blood sugar. So they would give me enough strips. For one time a day, I could test and you weren't allowed to test more than that. And I had to fight with my insurance to be able to be tested to be able to test four times a day. If you're testing one time a day, you don't know what's going on with you. You don't know how to manage anything. Nobody talks about CGM. So I mean, that's just now becoming a thing for type two is like being aware of what's going on. Like we weren't allowed access to our bodies to know what is going on. So how are we supposed to do anything about it. And to that end, I have a friend that is a patient of the VA. And he's a type two, he is only permitted to test with one strip one time a week, and that's how they manage type two.

Scott Benner 1:17:02
i He's in the eights, that's terrible. It does some times strike me that the like, just what you just said, like, the biggest obstacle with helping people with type two diabetes is, is that if they have an eating schedule for their life, that's, that's not valuable for their health, just saying to somebody eat better, and get out of here. Like if they could just eat better magically, I think they would have done it on their own already, they wouldn't have waited to have diabetes, you know what I mean? Like, so if that's really the person's problem, like, right, and you just saying it to them doesn't fit. It doesn't matter if it's even the eating, like no matter what it is that people have built up. I don't know what to call it. Like, there's, there's just the way their life works, right? It's a rhythm, it's how it goes. Maybe they have trouble separating themselves from sugar or whatever they're, you know, they can't stop smoking, like, you know what I mean? Like, you don't mean like looking at a smoker and just going, Hey, you're gonna get lung cancer stopped smoking? Well, they go home and they go, I don't have lung cancer yet. So maybe it won't happen, and I'm not gonna stop smoking. And then they'll get lung cancer, like I literally have lung cancer might as well keep smoking like it's a it's the way people's minds tend to work. And then the medical community, knowing full well, you're not going to stop smoking when they tell you to says stop smoking, and then that they act like that absolves them. Yeah, I mean, like, well, I've done my part, I told the guy not to smoke. Well, yeah. But everyone knows not to smoke man, like no one, you know, it doesn't help anybody. You know, I wonder if I wonder if the thing that doesn't help type ones is that the immediacy of a bad outcome exists? It's not it's not take care of your type one diabetes, or maybe you'll get lung cancer, or maybe your type two diabetes will progress to blah, blah, blah, it's, Hey, you're gonna take care of this right now? Or three days from now you're going to be in a coma? Right? Yeah. Maybe that's the only thing that that that pushes people past their human? I don't know.

Grace 1:19:05
And it begs the question for the type twos beings, they don't, they tend not to test for them extensively, you're not allowed to see you're not allowed to see a picture of what's going on, like you're with type one. So you're not allowed to see what's going on through blood sugar, you're not allowed to see any trends. It's just, you know, pop in here twice a year and will tell you, quote, unquote, if you're good or bad, and not all type twos are overweight, and not all type twos eat like crap. And so it's like, how many type twos are misdiagnosed. And, you know, we see this all the time in the type one community because they're not allowed to even see what's going on with them in any way, shape or form. You know, and then they're blamed for it.

Scott Benner 1:19:55
I completely agree. You are making a lot of sense. I, Mike, I can't say enough. I think you're terrific. I I appreciate you having this long winding and confusing Lee. I have no I've never once thought of having hydrotherapy but now I'm like, I would probably try it once just to try it. Just to see what's up and see what happens. Like it. You see what comes out, right?

Grace 1:20:21
i Oh, yeah. And you can't see it too. Yeah.

Scott Benner 1:20:24
I also, I think, I think a lot recently about like, my, my gut biome, you know, and if I shouldn't, like, we just had it tested for our kids. And they're both taking, like, supplements right now to adjust their, their gut health. Like, each of them had a different kind of thing. So that's, yeah, so they're taking it now. I don't know enough about it yet to speak about it, you know, thoughtfully on here yet, but art is taking something right now that literally is like, I think it's smashed up poo in a capitalist. And, and she's like, she's so funny. She's just like, she said, in the jar, when they're all when all the all the capsules are together. It let me just be clear grace. It's and I was like, well, there you go. You take one out, it just smells like she goes, You know, it's funny. Together. They smell like, but when you just get one of them. It just smells like bad cheese. That's what she said.

Grace 1:21:25
That's hilarious. Just like, just like took a breath. When you said bad cheese. I was like, Oh,

Scott Benner 1:21:32
she's like, I can get that down, no problem. And that she takes no trouble at all. And she only has to do it for like 60 days or something like that. To try to make a change. Like like we're trying to figure out if she has like leaky gut, like she has acne that we can't impact for some reason. Right? Right. And and, and we did this through Addy through Dr. Benito. She sent out their samples getting the kids to get stool samples was hilarious. And that it was they weren't they weren't excited to do that.

Grace 1:22:03
That's funny. So they

Scott Benner 1:22:05
did that. And then they both got their reports back. Kohl's was Kohl's, I think there's like two things. Kohl's, like, you know, pop in once a day. And Arden's taking three. And that's, that's it when I said we're going to try it for 60 days and see if things that they've had complaints about in the past. Clear. It's worth it. That's fascinating.

Grace 1:22:24
I'd like to hear the results of that. She's that doctor is just she's really saying

Scott Benner 1:22:30
I think I'm going to do it myself so that I can talk about on the podcast better. Right, you know, because then because I know how my body works. So I'll be able to thoughtfully say like, this is what was happening before I did this thing. Here's what they told me. I did the treatment. Here's what happened afterwards whether something worked or not. Right, so I think I'm gonna do it like next year, like in the in the new year. Not around Christmas. I don't poop on cardboard at Christmastime.

Grace 1:22:56
No, that wouldn't be so hard. It would be the most festive thing to do.

Scott Benner 1:23:00
The hard and fast rule for me. Great. All right, well, I really appreciate you doing this. I thank you so much for coming on the show.

Grace 1:23:08
Oh, you're very welcome.

Scott Benner 1:23:18
A huge thanks to Ian pen from Medtronic, diabetes and Dexcom for sponsoring this episode of The Juicebox Podcast. Don't forget that you can go to in pen today.com to check out the pen and dexcom.com forward slash juice box to see about that free 10 day trial of the Dexcom G six oh what if you're eligible go looky looky I also want to remind you to go to T one D exchange.org. Forward slash juice box, take the survey. And of course, I want to thank grace for sharing her story. And if you wait till after the music, I'm going to tell you what Grace has learned about her health

head over to the place where I met grace, the Juicebox Podcast Facebook page Juicebox Podcast type one diabetes. Okay, here's my update from grace. I want to thank Isabel who also helps me with the Facebook page. She got this information for me from Grace yesterday because I was not feeling well. And I wasn't up to it. As of last week, Grace's diagnosis of gastroparesis, endometriosis, abdominal adhesions, all stand a new addition last month, she has epi exocrine pancreatic insufficiency. And this is the big one. I would do a little drumroll here, but I gotta be honest with you. It's very late and I'm not up for it. Grace is type two diagnosis has been changed to type one diabetes. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#704 Mature Onset of Young Love

Melanie has MODY diabetes and is here to share her story.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 704 of the Juicebox Podcast.

On today's program we're going to be speaking with Melanie who has Modi diabetes, and a host of other interesting things to talk about. Please remember while we're talking 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. We're becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juice box. Join the registry. Take the survey help people living with type one diabetes while you're supporting the Juicebox Podcast, T one D exchange.org. Forward slash juice box. If you're looking for a place online to talk to other people who live with diabetes, you should check out the Facebook group for the Juicebox Podcast. It's called Juicebox Podcast type one diabetes. It's on Facebook. It's a private group with over 25,000 members. There's something there for everyone.

This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod dash and the Omni pod five. You can learn more today at Omni pod.com forward slash juicebox. Get yourself a tubeless insulin pump. Get the army pod. The podcast is also sponsored today by us med white glove treatment for your diabetes supplies is just a phone call away. 888-721-1514. Call that number or go to us med.com forward slash juicebox to get a free benefits check. Wouldn't it be great to get your diabetes supplies without a hassle? I know it would be us med All right. That was not it was my fault, Molly, but I'm blaming my dogs.

Melanie 2:25
Hey, that works. They can defend themselves. It's the perfect scapegoat.

Scott Benner 2:29
Yeah. So there's like a few minutes before? Do you really care about this? You want me to tell you?

Melanie 2:34
I love talking. So I'll tell

Scott Benner 2:37
you what, then we're you're being recorded. Introduce yourself. You don't have to use your last name. If you don't want to, then I'll jump in and tell you.

Melanie 2:44
So my name is Melanie. I'm super excited to be here. What do you what do you want me to tell you?

Scott Benner 2:49
You're done melody that's good enough, we can start talking. Okay, perfect. So I was up very late last night. There's my mom's been having some health issues. And I'm sorry to hear that. You're very kind. Thank you. So I tried to sleep in a little this morning. And I still figured I could do everything I wanted to do take shower, you know, blah, blah, blah. And then I look over and my wife is sick and she has been sick for a couple of weeks now. She has some crazy cough it's not COVID it's just really bad and it's beating her up really good. And I look over and I'm like oh god she's not even awake. I was expecting her to be downstairs I thought other poor dogs haven't been outside yet. now live in a short amount of time woken myself up taking a shower, gotten dressed. And I'm like by the way, there's you have something talking in the background. I don't know what that was, is it? Oh, it's my daughter. She's running around. That's fine. So I'm like well the poor dogs I'll let them out real quick. So I'm just gonna let them out let them pay do what they got to do and I'll feed them when I'm done talking to you or Kelly will come down and she'll feed whatever they go outside immediately break ranks and go in two different directions. One is meandering around won't even pay them. I'm literally like I'm like indie just pee pee now. I gotta go You gotta pick now I'm texting you hey molly, I'm gonna be late. I get the big one in the house I look over cannot find the little whenever anywhere I am looking all over my property and then I just kind of widened my search pattern in my eyes. And sure enough, Melanie he showed on my neighbor's driveway. Of course not in their yard where I can maybe pretend that their dog did it but in their driveway. So I now am in my neighbor's driveway picking up dog crap. And and in anyway in the rush to go outside to help them to go out. I didn't click one simple button which is why I couldn't hear you while you were doing everything.

Melanie 4:47
Gotcha. No, that sounds like my dogs. I have one of those dogs too. He like will not go when you need him to go. But you're way kinder than I am. I just throw in the backyard and I'm like Okay, stay out there for two hours. You Fake air.

Scott Benner 5:01
I have to be honest, it's gonna sound crazy. I don't want to rush them. Like I wouldn't want somebody running into the bathroom yelling Now Scott, go do it right now. I mean, it's in case case I'm having a moment. But But I really did have to get upstairs and I really very badly because my wife was sick didn't want her to come down and have to deal with every Yeah, for sure. Anyway,

Melanie 5:21
that's, that's funny. Well, I'm glad. I'm glad you got that all sorted out.

Scott Benner 5:26
The downside of it is you spent three minutes talking to yourself.

Melanie 5:31
No, it's all good. I I work from home. And so zoom calls are like my life. So I'm used to staring at a blank zoom screen. So you're

Scott Benner 5:40
Gotcha. Okay, so why are you on the podcast? Let me think if I can remember anything at all, Lada Modi, actually, damn it.

Melanie 5:51
So close, though. One of one of the unknowns? Yeah. Yeah. So I am a Modi type three diabetic.

Scott Benner 5:59
Okay, you are and how long have you known that about yourself?

Melanie 6:03
So my story is really funny. I was misdiagnosed as a type two. When I was 18. I had one of the worst doctors imaginable. I went into him with high blood sugar. My dad's a diabetic, my answer diabetic, my grandmother's a diabetic. And we just don't know beyond that. Went into him. I was like 18 years old. I think I weighed maybe, like 120 pounds. I'm five, seven. So just to give you a little bit of context, like, that's really thin for me. And he told me start Metformin don't gain weight. That was literally his advice, which obviously, you know, is the worst thing you can possibly do. Wow. So it was a very slow progression, since at least for me, my Modio is kind of a slow onset. And so I didn't actually realize that I had what I had until I was pregnant with my first daughter last year. And I'm 20 I just turned 29. So this was like a decade of literally just trying to figure out what's going on. Like,

Scott Benner 7:10
when you say you're trying to figure out what's going on what is happening. But take all the diagnosis. I'm making quotes out of it for a second, like what was your day to day like?

Melanie 7:20
So honestly, like, to give you a little backstory, like my dad is a diabetic. And if I had to put money on it, he's probably Modi as well, but has never been diagnosed. And so I first learned

Scott Benner 7:34
about hey, Melanie, could you put that kid in a closet or something? Please? We're talking here. Yeah. Thanks very much. Just I'm

Melanie 7:42
yeah, let me ask my husband. Normally she,

Scott Benner 7:45
I'm teasing you. That's lovely.

Melanie 7:48
Oh, okay. I'm like, Well, I will try.

Scott Benner 7:51
I thought saying put her in a closet was fanciful enough that you

Melanie 7:57
know, you're I was really just looking over like, do you need me to put her upstairs with my husband, though?

Scott Benner 8:03
were you considering putting her in her closet? Let's talk about that first. Well, I

Melanie 8:06
mean, you weren't necessary? No, not at all.

Scott Benner 8:10
Not at all. If you can, if you can relocate her, that'd be lovely. Yeah, for

Melanie 8:15
sure. Um, once again, let me mute this for just two seconds, so I can yell up the stairs

Scott Benner 8:23
I don't know if I'm gonna pause this or not so bored. Okay,

Melanie 8:27
sorry. Very quick. Yeah, so she's like obsessed with her show Coco mela so I thought that she would just sit there and veg but of course, this is the one day that she's like, No, I need your I need your attention right

Scott Benner 8:38
now. Hey, once again, choke Coco melon. Yeah.

Melanie 8:41
Yeah, Coco mom. It's like this little kids show. It's really it's really the worst thing on the planet. But she likes it. So right up there. So we just go with it. Okay, thank you. Appreciate you. Okay, Kid officially in the closet.

Scott Benner 8:56
Okay. Wow, hold on a second. Cocoa melon are just on YouTube is nursery rhymes. Yeah, it's kind of like not bad, but not good. Animation. And these videos have massive downloads.

Melanie 9:13
Yeah, it's ridiculous. I'm I'm pretty sure that they're like subliminally messaging these kids. Like did you ever see zoo lander? Yeah. Where like, they like have like the subliminal stuff going in the background. I'm pretty sure it's something like that.

Scott Benner 9:26
No lie. These videos have anywhere between eight and 25 million views apiece and they're like 40 minutes long.

Melanie 9:36
Yeah, each episode has like eight to 10 little nursery songs and they're just dreadful. Well, they're absolutely dreadful. Here's

Scott Benner 9:42
one with 50 million views. A year.

Melanie 9:48
I probably contributed about 1000 So

Scott Benner 9:51
I also do it in Spanish Portuguese. What looks like Japanese to me. Yeah. Oh, somebody's a genius.

Melanie 10:01
I know right? Like you look at it, you're like I could have done that. I could have I could have figured that out.

Scott Benner 10:07
It's I am so mad at myself right now.

Melanie 10:10
I know you pick the wrong field,

Scott Benner 10:12
why am I working so hard?

Melanie 10:15
Exactly. Well, the ones that get me are like, have you seen the ones where people will just open toys? Like it's literally just a camera, like pointed at their hands, and they'll just like open toys.

Scott Benner 10:23
I saw one kid do that once I learned how much money he makes for doing it. And it just I never, I never thought about it again. It made me so upset. Hey,

Melanie 10:33
like makes you sick to your stomach, right? Like this. Alright, so

Scott Benner 10:37
now that we've dispensed with your kid, so you were saying that you think your father had? Yes has Modi two?

Melanie 10:44
Yeah. So my first encounter with the whole concept of diabetes was, I think I was about eight or 10. I was pretty young. And my dad had come home from a worksite. He's an alarm technician. So he goes out to like work sites. And he had stepped on a screw. And he didn't feel it. He had complete, like, neuropathy in his feet. And he kind of just ignored it. I think it was more so my parents didn't have insurance. There's six of us. So it was kind of like this, I'm just going to ignore it because we don't have money for it type of thing. And so he comes home. And that's literally one of the first things I remember from my childhood is he like, takes his shoe off, and it's soaked with blood. And so he ended up in the hospital. And he they almost had to amputate his foot because he had blood poisoning. But luckily he didn't. But that was like my first encounter with diabetes. And from that point on, I was just terrified, like, just scared to death that I was going to be diabetic. And that was going to happen to me, but like, nobody talked to me like, my parents are very much so like, we're just not going to talk about things. We're going to kind of just handle them and then sweep them under the rug.

Scott Benner 11:52
Oh, Catholic. Catholic gotta get right.

Melanie 11:56
Not quite close. Yeah, it was my parents. My dad just doesn't talk. Like he's not a talker. And then my mom just doesn't like dealing with things. So

Scott Benner 12:07
tell me, um, on the day your dad's foot got screwed. How old were you about?

Melanie 12:13
I want to say probably about eight or 10.

Scott Benner 12:16
So you wrote around that edge. Worried about it through your those formative years. And then when you were 18, somebody said, Hey, you have diabetes?

Melanie 12:24
Yeah. So it was an absolutely just like, terrifying thing. Because it actually was ice. Okay, so the way that I even learned to like, get myself checked, because I didn't have insurance until I was 18. And like, living on my own, I started working.

Scott Benner 12:41
And so we wait, wait, stop. You didn't have insurance as a child?

Melanie 12:44
No, my parent, no, nobody had insurance in our family. Okay, so it was just, and I mean, like, my parents had six kids. My dad didn't have like a great job. Like, I'm just I'm just amazed at the things they pulled off. Yeah, we didn't. How old?

Scott Benner 13:00
Were you the first time to get your teeth cleaned?

Melanie 13:03
Oh, I was like eight. But because they had like a family dentist that would like give them really good deals and stuff. So I definitely saw the dentist. Surprisingly, enough of all the things you think my parents cared about our teeth,

Scott Benner 13:17
but I just I just don't know, like people who didn't grow up broke. Like, I don't know if they would like think about stuff like that. Like, I didn't go to the dentist until I was an adult and I I had health insurance.

Melanie 13:30
Yeah, it's I literally my mom told us when we were kids, she was like, don't break an arm. We're not going to the doctor. Like that was that that was our like preventative measure. It wasn't like, let me teach you to climb this tree. It was if you break an arm, it's just it is what it is.

Scott Benner 13:46
Not only do you put down because you fall into that tree. And that's what's gonna happen.

Melanie 13:52
Exactly. That was like literally, the things my mom says like, she even told us one time for our dog. And looking back on all this probably explains why I'm as screwed up as I am. But she was like, if that dog gets sick, I'm not going to take it to the vet to put it down. I'm going to take it in the backyard and hit its head with a brick.

Scott Benner 14:10
Hey, Merry Christmas.

Melanie 14:12
Exactly. Yeah. So but that was just really my upbringing with I guess the medical world as a whole, it was just very much so like, we don't touch it. That's not what we do. Um, it was even like, at the point where one time my mom there was a grease fire in our house and she got like third degree burns on her arms and her face and she wasn't going to go to the hospital. Like it was just like, we had to beg her to go in the ambulance. And it was it was just but that was like the demeanor around health and hospitals and doctors. It was just we don't have money. We don't touch it. Yeah. And so that was definitely a big thing for me growing up because I just thought you don't. You don't go to the doctor, right? You You figure it out was really what it was. So then When I was about 18, I started feeling like tingling in my toes. And that was just scared the crap out of me because obviously, I saw what happened with my dad. And so I decided to take his little blood meter. And I check it. And it's at like, 347. Like, really high. Yeah. And that just freaked me out. And so finally, when I was 18, I decided to it was after that point, I decided to go to the doctor at that point, I had insurance. I didn't even know what to do with it. Like, I was like, oh, insurance. So it's that.

Scott Benner 15:35
Just holding up this car to the room going, can someone help me? Can someone help me?

Melanie 15:40
That was literally how it was like, I had no idea how to use my insurance. Nobody had taught me. And so I just go into like the United Healthcare. thing. I don't know if I can say insurance names or not. But I go into their little portal. And I like just search for like a doctor. Like anybody. I'm like, I don't know, just somebody. Of course, I pick the worst doctor on the face of the planet by chance, and so I go to him. And like I said, he was just horrible, like 18 years old, super thin, diabetic family history. He doesn't even do like he doesn't a one C. And then he gives me that Foreman says don't gain weight. That's it. Like that was the diagnosis

Scott Benner 16:21
about 11 years ago. 18 years old Byers. Yeah. Yeah, by myself in a doctor's room. Hey, you didn't? You were probably thrilled when he didn't threaten to hit you in the head with a break.

Melanie 16:32
Exactly. Yeah. So now just the whole experience. And so like, really, my whole diabetic journey was very, I guess, very lonely in a lot of ways, because I didn't know anything. And so I had to learn what questions to ask and what to do and how to advocate for myself. So it's been a very, very interesting journey.

Scott Benner 16:53
How many What was your agency when you were 18?

Melanie 16:57
It was a five points. No, not that's wrong. 6.4 I want to say, so it wasn't crazy. But it was definitely. Yeah, it was definitely in that that pre diabetic range. Okay. So that's why it's been a very slow, like onset for me. Yeah. So I started taking Metformin. And I just I don't, I don't I didn't like the way I felt I was raised very, we don't go to doctors natural remedies. And so I just felt really weird about it. And then I took it. And then shortly after that, I actually got engaged my husband, and we got married really young. So

Scott Benner 17:38
if I was you? Were like, I'm not doing this by myself. I gotta get out of

Melanie 17:43
here. Yeah, get out of my crappy little apartment. Yeah. So anyways, I got engaged. And once again, it was a very, we were in a very, like, toxic religious environment. That was about, we just pray for healing, you know, and it was is very, very toxic and unhealthy. And so we decide that I'm going to stop taking my metformin and we're just going to trust God, and just pray it away. Which is, I Oh, I could go on and on and on.

Scott Benner 18:18
I want you to slow down a couple little things. You're, you're a little excited, which is fine, but I think you're either banging on the microphone wire or touching or touching the table a lot. Don't do that. That's okay. And give a drink.

Melanie 18:32
I can get the one

Scott Benner 18:33
yourself a water, take a drink, relax for a second, okay, because we're gonna dig into a lot of stuff and I don't want to dry you out and get you over excited.

Melanie 18:42
Let me let me grab some water

Scott Benner 18:52
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Melanie 22:48
Okay, we're back.

Scott Benner 22:49
I'm super excited to talk to you about all this. Do you mind digging into some of it?

Melanie 22:53
No, not at all. It's, it's this has been my life. So I'm, I'm excited somebody wants to listen to me rant.

Scott Benner 23:01
But for $40 The therapist will listen to but that's not the point. I'll do it for free. It sounds good. The husband that we just pawned the kid off on same guy you married when you were younger? Same guy. Yes. You and he together decided to let Jesus take the wheel. In a way I was

Melanie 23:19
very much so. Um, I want to say submissive, like, it was just a very unhealthy culture. I don't know if you have any background in like, the religious world at all. But it was just a very unhealthy culture of the man is the head of the household. And, and so so he felt the need as a young man to fill that role. Right? Even though now like our relationship is completely different. Completely, like we totally had the opportunity to grow up together and realize how much just bull crap was going so much so much was going on. So

Scott Benner 24:02
you and he grew up in similar ways. And yes, and so you both kind of escaped together. And then you fall back into what you saw when you were growing up, which was the man says something the lady does it kind of thing. And exactly. For people who don't understand because they haven't ever mirrored that. The guy can feel like well, that's my job. I'm supposed to tell everybody what to do. Like it doesn't it's not as it's not as domineering from their perspective as it feels probably from your perspective. It's more like it's like, this is my responsibility. I'm supposed to be doing this end. They have no idea what they're doing. So they just knee jerk reaction everything and then run 100 miles an hour with it. Is that about right?

Melanie 24:46
Exactly. That about sums it up. So from his perspective, it wasn't an all a I'm I have to dominate here. It was just a well this is what I'm supposed to do. Got it. So So it was yeah, it's our relationship is totally different now.

Scott Benner 25:04
Well, that's amazing that you made it through that if you saw a therapist, they would congratulate you on working things out and not ruining your relationship.

Melanie 25:10
Exactly. Like we talk, we talk a lot, we're at a point where we will literally tell each other everything. And I've told them before, it is a miracle. We're still married. I don't know how we're still married. And why do you think that? I think it's because we both went into the marriage saying, we're going to work out whatever happens. And we were just really committed to being honest with each other. And I'm definitely I've learned as I've gotten older, I'm a very dominant personality, and I'm very much so a leader. I don't like leaving conflict in a box. That's not it makes me super uncomfortable. So anytime there would be some kind of conflict, I would drag it out. Until, until we dealt with it. And I really think that that was probably a big part of it is it just we forced the issue of figuring it out. And he honestly had a huge transformation when he was in college, because it just opened his mind to viewpoints that he hadn't even been introduced to. And so as he grew, and he changed a lot of who he was, he like, realized, wow, I'm kind of an act. To put it, sorry, I don't know if I can say that on here. But it's, he just realized that he needed to change. And then through that, we just, I don't know, we just talked and figured it out. And we were willing to work through it

Scott Benner 26:48
pretty cool. The hardest part is what seeing the things you don't see about yourself, and then somebody points it out to you. And you have to kind of swallow hard and look at yourself from a different perspective, you think that's the more difficult issues,

Melanie 27:02
it's definitely hard, because in order to admit, you need to be better, you have to admit that you've been wrong. And that's one of the hardest things to do. For a lot of people, especially when you are raised in that culture of I have to be the leader. I can't be wrong, I have to man up, so to speak. So I give him a lot of props for the transformation he made. Because it went from him feeling like he needed to take charge, even from a medical perspective to you tell me what you need. And I'll be there. And it's it's been a huge, huge difference for us.

Scott Benner 27:42
How did he overcome that? Do you think like, how did he give away the idea that you weren't going to be lost without his direction?

Melanie 27:51
It it was really going to school was huge, because that changed so much for him. He changed a lot of his, his politics, his beliefs, just everything. And then one of the biggest things for us though, is we actually went through a program together, it's actually one that we're doing through the company I work with. So it's a personal development program. And basically, it was all centered around asking deeper questions and digging into what is true here, not just what do you believe, but what is actually true. It forced some very deep and uncomfortable conversations between us that made us just actually own up to who we were and who we wanted to be. And that like we literally like describe her life The program is called the Creator purge. We describe our life as pre creator purge and post creator purge because it was such a big impact on us, like just digging into our own selves and realizing how much insecurity and fear there was for both of us. And it that just it just absolutely changed our marriage 100% And with that, everything diabetic for me because people think that like a diabetic diagnosis just lives on its own, but it doesn't like it affects everything in your life.

Scott Benner 29:19
know for sure. Okay, so that's kind of crazy. Day to day medically for those 11 years, you're taking Metformin, is it messing with your stomach, or did your body get used to it?

Melanie 29:31
So after taking this back when we decided we're just gonna let Jesus take the wheel, right, I've stopped all medication. I wasn't testing. It was literally like, worst thing I could do. I stopped testing. I just decided I'm just gonna have faith. And when I was 21, we had been married for about a year. We go to apply for life insurance, and they do all the bloodwork and I'm denied for life insurance at 21 because of high blood sugar First, I want to say my agency at that point was probably about a 7.7. Ish. Okay, so definitely like kind of creeping up. And so, same thing, I don't really even know anything in this world of diabetes. I'm super like disheartened, because this is still the point where our marriage is really on the rocks. I go to see a holistic medical doctor, she's actually a, what do they call it, an acupuncture doctor thought it all the

Scott Benner 30:32
way needed to be seeing maybe if they poked enough holes, me the sugar would come

Melanie 30:35
out, maybe. And so I actually started a very strict vegan diet. And so my approach because I did some Google searches, and I learned I was just looking type two diabetes, I didn't even consider type one or Modi or anything else, just because I had always heard. If you don't have type one as a baby, you're not type one, or type two. So my approach was okay, well, let me see how I can fix myself. And so that led me down the path of diet. And so I started a very strict vegan diet, which helped, because my body was still making a little bit of insulin. So the fact that I was eating so clean and so disciplined, it dropped my blood sugar enough to kind of get approved for life insurance.

Scott Benner 31:26
Where did your excellency go to?

Melanie 31:28
It went down to I think, a 6.3 or a 6.4.

Scott Benner 31:32
Did you know that that still wasn't optimal?

Melanie 31:35
I didn't, I never imagined, okay. Like, I didn't even know what a good a one C was, like. My dream was a 5.7. I thought I could never reach a 5.7 ever.

Scott Benner 31:47
Dream was life insurance? Why were you trying so hard to get life insurance when you were 21?

Melanie 31:51
It was just what we thought we were supposed to do. Like as young adults, we were like, Okay, well, we're supposed to set up retirement plans. We're supposed to get life insurance, like we were just completely winging this whole adult thing. Yeah. It was just because my husband didn't know either. His parents are very similar in the sense that they don't really talk about things they kind of just let them be. And so

Scott Benner 32:19
give me a side question. Now that you're a person who talks to their husband, why do you think other people don't talk to each other?

Melanie 32:28
I think because it can be really difficult to just embrace what is true. And to recognize that we all go through things, and we have to be okay with accepting someone else's for us. And so it can be really painful, like, some of the issues that we have had to dig through. And actually resolve were really painful in the moment. And it's really easy to choose momentary okayness in order to, like, but it to put off actual healing in the relationship. And so it's just, there were definitely times where it was hard. Yeah, where I like, I didn't want to, like, there were literally times where I wanted to just go drive somewhere else and be like, I'm staying with, so and so I'm not doing this, but I like forced myself to stay. And it's just it's really difficult. Because working through those things are, are painful. Yeah. Because you have to dig up things about yourself. You have to figure out why you are the way you are. And that's really hard.

Scott Benner 33:50
I find that even after you know, it's still hard. Yeah, that's why I'm impressed when people do it. Because I know for me, that when people I care about aren't happy, or aren't healthy, then my focus turns completely to fixing something for them. Yeah. And I, you would have a hard time talking me out of it. Believing talking me out of believing that my energy isn't best serve, trying to help them. And so even if you stepped in front of me and said it's got a don't help me, I would think I not even think it's hard to it's a it's an impulse, right? Well, no, they just don't know how bad this is for them. I see how bad it is for them. I can save them. That kind of feeling. Exactly. It's a terrible feeling to live with. Because you don't know what's happening. Like, it's not like you don't step out of the situation and never think well, they're right. They don't need my help or they don't want my help, you know, which is a weird thing to try to accept too, especially when You care about somebody and they don't want your help. And then you realize that, like, you know, there is a world where you could be right this person could be going down a bad path or going to end up having a bad outcome. And there's just nothing that they're going to let you do about it. And the more you try the further like of a chasm, you push between each other. Yeah, I think it's important. The reason I'm talking about it so much right now with you is a you brought it up and be because, you know, there are a lot of people who listen who take care of people with type one who are at some point or another may run into this exact problem. And you have to decide, like, What path are you going to head down? Are you going to ruin your relationship to save someone's blood sugar? Because eventually, eventually, you'll you'll wedge yourself so far apart, you won't have any input into their health anyway? Or do you step back and try to let them do their thing. And hopefully, you can be there, if it falls apart, or hopefully they can figure it out on their own,

Melanie 36:01
for sure. And it's, it's really become a fine, a fine balance for us. We're at the point now, because I have I have, I'm fully insulin dependent. Now, I'm just going to give you a little flash forward, I'm on the Omni pod in the Dexcom thanks to Juicebox Podcast, amazing, amazing combo, I am telling you. But he literally checks my blood sugar at night, because I usually go to sleep before I do. So he has the app on his phone, and he'll come and he'll punch in my blood sugar into the Omni pod and give whatever correction is necessary. And so we've we've come to the point where literally, he helps take care of me. And that is definitely a level of trust that we've had to get to. And I would say for anybody that maybe is dealing with that, that they have a loved one that they're trying to figure out how to help. I would say the best thing that you can do is listen and ask questions, and just go on the learning journey with them. Yeah, because there's so many nuances to being a diabetic, like, you are literally I don't have to tell you, you're literally controlling an Oregon from the outside. And there are some days where it's just it's just tough. Yeah. There's there's no ways around it. Yeah, it's just tough. It just sucks.

Scott Benner 37:29
Okay, so cheese. This has got like, so what's Modi? I still don't know what, oh, by the way, no matter how many people I talked to about Modi, I don't really know what Modi is. Did doesn't matter how many times I Google it. I don't know what Modi is, but maybe you're gonna be the one that's gonna set me straight today.

Melanie 37:47
Maybe I'll be the one I get. I get super passionate about this. I talked to everybody. And that's actually really helped me with this journey is rather than allowing myself to become a victim, I use it as a chance to educate the people around me. And I just I tell them about it. I'm like, oh, yeah, this is what I have. And, and this is what it does. And this is why and this is why and rather than giving them a chance to feel bad for me, it allows me to educate and then as I educate I learn more. So anyway, I just I think it's important to teach the things you wear to the people around you as well.

Scott Benner 38:24
Absolutely. Okay, ready? Hold on. Okay. Wait, I'm on. I'm just clicking now. I'm just on the web. I'm on the internet right now. Looking at Modi. What is maturity onset diabetes of the Young is that first of all your understanding of what Modi stands for? Yes. Okay. Yes, it is. Because immediately it then says Modi is a monogenic form of diabetes. And then my brain goes, Wait, did they mean and was monogenic? That's only because I'm not that smart. That usually first occurs during adolescence or early adulthood Modi accounts for up to 2% of all cases of diabetes in the US in people ages 20 or younger. Okay. Yes, so it makes sense. Okay.

Melanie 39:04
Yes. So to kind of break down at least to my understanding, obviously, I am not a doctor. But I have done lots and lots of Google searches. And I was actually blessed enough to land with a an endocrinologist that is really knowledgeable of Modi, which, which has been incredible for me like it was a total godsend. This woman, I have the best endocrinologist in the world, but least in my opinion. So just to kind of break down what Modi is, from my understanding. So mature onset diabetes of the young, it basically means it's diabetes that pops up in your adolescence is essentially what it means. And the thing that sets Modi apart from let's say, type one, is it is truly a genetic disorder. It is not an autoimmune disorder. So, with type one, there's the autoimmune component where obviously, the beta cells of your pancreas, it attacks itself and your your, your body stops being able to read what's happening, which is why your pancreas eventually shuts down and all that jazz, you know all that with Modi, it does not have that autoimmune disorder. So when I was first tested for type one, all of the tests came back negative. It was it was actually in my pregnancy with my daughter, the one the one we shipped off. I went in so little story storytime, I got pregnant with her. I went in to see my OB, and my primary care doctor is is amazing. He basically told me because you're dealing with diabetes, and he didn't really know either, but I don't expect family care doctors to be incredibly knowledgeable about diabetes, it's not their field. But he was smart enough, at least to say, we need you to go see an OB right away, and they're going to get you into a specialist because they're going to help you. So I go immediately I see my OB. And he sends me immediately over to the perinatal, which is like high risk pregnancy. And they hooked me up with a diabetic educator. She tells me, you can continue Metformin, or we can try insulin. It's your choice. Like I can't tell you what to do. But these are kind of your options. And so Metformin, I wasn't taking it at the time. At this time, I actually had switched to a strict ketogenic diet, which helped my blood sugars immensely, but only because I wasn't eating carbs. That was it. Like, there wasn't any other any other science so

Scott Benner 41:45
that I thought you were gonna tell me you switch to Buddha.

Melanie 41:50
Close enough. No, so at that point, I was doing strictly ketogenic, but when I got pregnant, I just couldn't maintain it. Obviously, your body needs carbohydrates, especially in pregnancy. And so I decide, well, I'll I'll give insulin a shot. See what happened.

Scott Benner 42:07
No pun intended. Go ahead.

Melanie 42:09
Exactly. Thank you. I didn't even think of that. So I start taking insulin. And magically, my sugars just fix. There's like, and I'm talking small, small doses. I'm having lows, like, crazy lows for like two or three minutes, like, and it just, I'm floored. I'm like, What is this what is happening here? Because I thought my whole life I was insulin resistant. And then I literally throw a little bit of insulin into my body. And it just like takes it like, throwing water on dry ground.

Scott Benner 42:48
Yeah, I see how you could be confused by that. Okay, that's

Melanie 42:51
exactly, yeah. And so I started talking to my diabetic educator, and she's, she's like, well, this is confusing, because you're definitely not a type two. And she was the one that first sent me for my type one antibody screening. And she's like, your tests are negative. So you're not a type one. You're definitely not a type two. I don't know what to tell you. And so basically, they told me regardless, well, I started doing digging at that point. I was like, Is there something in the middle? Is there something going on? And so good old Google, I started researching. And sure enough, I discover, but I found at the time was Modi. And it just made all the sense in the world. Wow. Because a lot of surefire signs like red flags for Modi is when diabetes doesn't skip generations. Because with like a type one, it is an autoimmune disorder. And so it's not it's not necessarily genetic. There might be genetic leanings. But it could absolutely skip generations. Like you could be a type one diabetic and not have type one diabetic children. That's just

Scott Benner 44:02
but this moody thing, just it every every line gets it like do you think your daughter will have it?

Melanie 44:09
So it is a 50% chance? Oh, wow. So if one of your parents has it, at least with my specific type, the way my endocrinologist explained it is she said it's Modi three with a dominant gene. So if I pass that gene on to my daughter 5050 chance she will have Modi and I'm actually I'm actually expecting my second daughter right now. So same thing with her if I pass that gene, she will be diabetic.

Scott Benner 44:36
I didn't know you're pregnant. Congratulations.

Melanie 44:38
Thank you. I appreciate it. I'm there inducing in about five weeks we were right there.

Scott Benner 44:45
Amazing. Look at you you're you're doing anything you know I've through this entire conversation. I'm I'm really interested and at the same time I can't wait till this is over so I can watch Coco melon and see what it is. I would play it right now but I don't think we Usually I can let the audio run.

Melanie 45:02
Probably not. But imagine Nursery Rhymes where they like put their own twist on it, but it kind of makes you mad because then they ruin the nursery rhyme.

Scott Benner 45:13
makes you angry. makes me angry. cartoon. It makes you angry.

Melanie 45:18
Yeah, no, but at the same time I love it because whenever I need to make dinner I just like turn it on that I think that was literally one of her first words was Coco. She was Coco.

Scott Benner 45:26
Coco. So it's a bit disappointing. I know so really want to be disappointed. Arden told me the other day, hey, she goes on just three days until the next season. A big mouth comes out on Netflix. I was like, oh, yeah, my daughter and I have that in common. We watch Big mouth.

Melanie 45:45
Hey, you know what, whatever. Whatever works. I

Scott Benner 45:47
have to ask you a question before we move on you. earlier. You like wanted to tell a story you said storytime. Was that a Bert kreischer reference. I don't use Bert kreischer. If you don't know those words, then it's not I was just checking. That's all. He's a commute.

Melanie 46:01
I know that. Oh, okay. I know there was the guy on was it fine. You go storytime. So.

Scott Benner 46:08
I didn't know that one. But anyway, like, I just I was wondering where that if it was just something you were saying? Or if you were referencing something,

Melanie 46:14
I think I was just saying.

Scott Benner 46:17
Okay, so let's, let's like, try to like, bring this all little tie it up. And then we're gonna build on it again. You grew up in a home where nobody talked about health. And people didn't take care of their health, you didn't have health insurance. When you became a team, you found out you had diabetes, they told you it was type two, you believed your father lived all that time with type two diabetes as well. You got married early, I did want to ask was your husband in college while you were married? Were you guys married in college,

Melanie 46:50
he had just started college. So we got married, he had been in college. He was in his first semester, when we got married.

Scott Benner 46:58
Were you in college.

Melanie 47:01
So I was taking classes at the time, we actually took a couple classes together, we like worked it out to try to be in the same class. And I was actually going to study music, music education. And I learned very quickly, that was not for me, because I hate teaching in a school setting. And so I just decided I I didn't even know what to do. So I decided to drop out and just let him go. Because financially, it was just going to be a very big burden on both of us. So he went to school, I ended up dropping out and just kept working.

Scott Benner 47:35
Is there any chance that you did that? Because you felt that it was his job more than yours? Or just because you did not enjoy this setting?

Melanie 47:44
I think it was probably a little of both. The more I dig back into what I've been through, I find that that mindset really permeated so much of what I did just everything. So it definitely wouldn't surprise me if there is that there was reasoning there. I haven't actually thought about it. So that's a great question.

Scott Benner 48:01
I know, you're very pregnant right now, I don't want to make you think about things that you haven't thought of. I'm not crying with you on this podcast this morning. I know, right? I'm just not. I'm with you. Okay, so, alright, so that happens. treat you like a type two for a while doesn't work. A lot of metformin get pregnant. And then boom, we're we're not type one. We're not type two, you start Googling Modi. And then how long has it been since you've known that?

Melanie 48:34
So once I had my daughter, because basically the perinatal goals, they told me, even if you get a different diagnosis at this point, we can't we're just going to keep treating the way we're treating pregnancy is just weird. Like, hormones are everywhere. So we can't, we're just going to keep treating with insulin because it's working. Once you have your daughter, we're going to hook you up as an endocrinologist. So once I had my daughter, that's when I went to see my endocrinologist. I told her some of my, my theories. And she sent me for actual Modi lab work, which was a genetic screening pool. And they found Sure enough, the Modi Jing and it was an actual Modi takes rediagnosis you're like Dr.

Scott Benner 49:18
House. Does that reference fall on you? Or you've

Melanie 49:22
never watched Dr. House? No, but I know what you're talking about.

Scott Benner 49:26
The show was just called house by the way. Well, that's goes to show you really did you like you took a bunch of like you took you took some information. You took some happenstance, you took some you know, historical knowledge, you went to the internet, you pieced it all together and you diagnosed yourself. Yeah, pretty much pretty with like one credit and music appreciation. Exactly. There you go. A rough shot upbringing. You're a genius, Melanie. I appreciate it all. Take it. She'd be like, Are you like every incredibly proud of yourself?

Melanie 50:04
Give her like I am. Actually,

Scott Benner 50:06
I would be too. And I am. Yeah, I'd run around telling people I'd be like, I know what's wrong with you just come here. I'll figure it out. Figure this out. You mean Google? We got this. Do you? Have you become the person? Like, are you like the? Are you like the medical person in the house? Now when something happens?

Melanie 50:25
I am. I absolutely am. It's what's funny is, and I will, I'll actually give a lot of credit to the Juicebox Podcast because there isn't a whole lot of Modi stuff out there. Because it is it's it's just such a strange type of diabetes. I just treat myself like a type one. Okay, so if I ever like need to tell somebody what's going on, and I don't want to, like sit there and explain it. I just tell them I'm a type one. I'm just like, I've got

Scott Benner 50:50
I don't want to deal with I don't know how you I don't in a world where people don't know the difference between type two and type one, actually, in a world where people would get burnt with grease and think they're not going to the hospital. I don't know how you explain Bodie. diabetes to people.

Melanie 51:03
Exactly, exactly. And so. So that's kind of how I treat. But I really have like, I just took it and ran with it. And I decided I am going to, I am going to figure this out. I now that I know what's wrong. I'm going to fix it. I'm going to figure out and sure enough, like I was able to during my first pregnancy, I started with a onesie of 6.3. And in pregnancy was insulin management. It dropped into a 5.4. In pregnancy. Wow. Which was insane. And then after that, I started this next pregnancy with an agency of 5.1. And yeah, I was. It's been amazing. And now like I peaked at 5.4. And now I'm back to 5.3. Melanie,

Scott Benner 51:54
are you back on? Are you on the show to tell me that there's finally going to be a baby named after me? What's going on right now? Well, she's a

Melanie 52:00
girl. So Scott tat

Scott Benner 52:04
it's not gonna work? Yeah, it doesn't have I don't want to I don't want to hang that on the kid. Don't worry about it. Let it go. Well, that's really I appreciate you saying that. I also, while you were saying it thought, you're the exact kind of person who would like this podcast because you completely believe that you need to kind of take your own health in your hands and am shepherded along its way and that you can't wait for somebody else to fix it for you.

Melanie 52:29
Yeah, you have to. And I've also been blessed with a great care team. I don't know if that's just because they're great, or because I do my research. But all of my doctors they are so hands off. Like, even my endocrinologist. She's like, Well, call me if you need anything

Scott Benner 52:51
else you imagine in a private room, they're like, they get together like at lunch, and they're like, hey, Melanie's like figuring all this out. We don't even have to do anything. This is perfect. Don't even talk when she comes in, let her talk first. She probably already knows what's going on, we can just nod along and look like geniuses.

Melanie 53:07
I know. Right? So it's, and that's how it is with my diabetic educator, too. She tells me she's like, You're doing a great job, you're teaching me things. She's like, you know more about your pumps that I know about it. So. So it's I feel like that's what's really important too, is you have to own your education. At the same time understanding that you can also like Teach Your doctors. Yeah, but but with the humility of understanding that they're there to help you. Because I think when I originally went into the medical setting, because I'd never went into it. And as a kid, I almost had this like, suspicion, like, all doctors are here to do is to get me to take drugs and take my money. Take my money. Exactly. And then I've realized that I do have a really great care team. But they're not with you every single day. Like they can't be and so you have to take that ownership.

Scott Benner 54:07
Yeah, no, I agree. Let me ask you a question. You're an employed person now and you have health insurance, obviously, yes. Looking back, and now that you have a child and one on the way, talk about what it's like to live without health insurance from the perspective of somebody who now knows what it's like to have it. I mean, what is it? Uh, I mean, I look at it as a scourge. You know, on us. It's a it's a plague on our house kind of a thing. Everybody should be covered with reasonable health insurance. A person at 18 years old, shouldn't walk into a doctor's office and be like, Wow, this is a doctor's office crazy. Exactly. You know, I shouldn't be 20 years old going like, I guess I should get my teeth cleaned. You know, like, like that kind of stuff like that shouldn't be happening to people. It's very basic care stuff. It's not you know, it's it's the great It's just it's just the great leap to say that people shouldn't have to live like your mom shouldn't have to burn herself and think I can't get in that ambulance. I can't even afford the ride, let alone what's going to happen when I got there.

Melanie 55:12
Yeah, you know, it's, oh, this is a whole rabbit hole, we could go down. We're about to go ahead. No, I get very frustrated especially. Well, let me put it this way. I feel like I have people, I have people in my family that are very staunch like Republican, why should I have to pay for health care for someone that's not going to be healthy. And I've had to take that opportunity to educate them. And tell them like there are some things people cannot control. And so I've learned that a lot of the people that are so so called against, like a universal health care type system. Most of them are just very, very ignorant. Some people are just awful people. But a lot of people are very ignorant. And I'm, I'm very blessed to have health insurance, because that's not something that everyone has. And I'll even go into the Facebook group and see people that are struggling with stuff. And I just, it breaks my heart. Like, and I wish I had the magic solution. I wish I do did because it is absolutely terrifying. To have to choose between your health and whether or not you're going to buy groceries. Like it's it's wrong. Yeah, in my viewpoint is it's very, very wrong. And let me say,

Scott Benner 56:41
I don't know, I don't know that it breaks so easily down. party lines. I bet you that that that that sentiment of I worked hard. Let them work hard to I think you'd find Democrats and independents and Republicans all willing to feel that if not say it out loud. I think it's a I think it's kind of a human idea. Like people like to feel like they pulled themselves up by their bootstraps, or things weren't given to them, you know, that kind of thing. And you want to feel like what you did was special. Like sometimes I don't know if it's so much about how a person would feel about another person as it is about wanting to feel like you've accomplished something like look like because if, if there are no poor people, then I don't get to feel good about what I've accomplished. If we're all on the same level, then why am I working so hard? There's some real psychological, like, bends in there that I'm sure not everybody feels that way. But there are enough there are people who do like somebody's got to lose so I can win. And if that makes sense or not?

Melanie 57:44
Oh, no, it absolutely does. Yeah. And I mean, it's definitely one of those weird mechanics of life where, technically that's true. But it doesn't mean that we should strive for that it you know,

Scott Benner 57:56
you could adjust what winning means to you. And then that's exactly like maybe winning means that a stranger you've never met before gets their teeth cleaned when they're nine years old. And that's a good thing. And you let that be, you know, exactly, I just see it pretty basically, as people's bodies break down, and everyone dies. And on the way to that death, they require health care, you're going to either give them the money at the end, after they've lived a hard life that they or just give them money in the beginning and make their life better. Exactly how the hell does that not make sense? Like you mean, like, it's the same money? Just put it in a better place?

Melanie 58:33
Yeah, no, I completely agree with you. And I think that you're spot on when you say that people want like I do when they want to feel special. And we have idolized this idea of, like you said, pulling yourself up from your bootstraps and being the success story. Yeah, you know, because I've talked to people and they're like, Well, I believe that no matter what happens, anyone can kind of pull themselves up. And it's like, but should they have to?

Scott Benner 59:00
Also can they? And is that fair? Like, you know, if you come from a systemic situation where for I mean, imagine 10 generations of people who barely get through high school and never go to college, right? Like, how is how is the the mother in 2020? That's from that line of, you know, of despair? How is she going to make a good decision for herself or her kid? She doesn't have the tools, like you said yourself, your husband had to go to college and meet a lot of other people to hear a lot of other opinions and ideas before he could kind of coalesce them together and say, Alright, well, this thing I heard when I was a kid, that's not right. But this does sound right. And I'm going to take this and this and put it together and turn myself into a person. That's, you know, we just act like that's always going to come from parents. When the truth is, it probably doesn't come from parents as frequently as we'd like to hope. Yeah, and then, you know, and then we just put it on them go, oh, they should have done a better job or they don't know how to do a better job.

Melanie 1:00:00
Exactly. Well, what's even what's funny to me, is my family, obviously, who we've talked about extensively. And just to give you a little, a little backstory to I have five brothers and sisters. So chances are, I'm not the only one with this condition. But none of them will go get tested because my family still doesn't have health insurance.

Scott Benner 1:00:23
And so yeah, they're gonna live their life into the ground then. And so

Melanie 1:00:26
I've begged them, go get tested, go figure it out. But and I finally had to decide I'm not their mother, I can't do anything. I've talked to my mom about it. I've told her, push them to get tested, but I can't. And those same siblings are some of the ones that are so against getting any type of help any type of quote, unquote, handout. And it's, it's just heartbreaking to me because I'm sitting here saying, you could have what I have, like judo, you're just ignoring it. And you have all these viewpoints that are against your own interest. And so that's that's why I say I think a lot of people say things out of ignorance is because they just they think they're fine. And it's easy to hold a viewpoint when you've never dealt with it.

Scott Benner 1:01:16
Listen, $45 worth of rubbers would have been, you know, sent to your dad, we would have been in a better situation. You know,

Unknown Speaker 1:01:24
I mean, theoretically,

Scott Benner 1:01:26
theoretically here like he would have us but horrible to think about I didn't mean to talk about your parents haven't apologized right now.

Melanie 1:01:36
No, you're fine. I've had so many uncomfortable conversations in my lifetime that nothing scares me anymore. So

Scott Benner 1:01:43
So isn't it interesting to I'm have to clear my throat I apologize. Oh, my God, I'm gonna die. Hold on. This is it's almost overwhelming. I apologize. Oh, no, no worries. I was gonna say, Isn't it interesting that your parents won't take medical help, and they don't want anybody to help them and she can't go to the hospital because she's on fire. But I'm assuming she went to a hospital have all those babies.

Melanie 1:02:11
She actually had my two younger siblings at home. God.

Scott Benner 1:02:15
Damn, no kidding. Harder, or your mom is she's like, I'm not taking help, because he's trying to make a point and I was wrong. Oh, your mom's like, no, no, this thing comes out. We all die. That's how it has to happen.

Melanie 1:02:28
My mom is pretty hardcore. I think that's where I get a lot of it from my mom is stubborn. She is a stubborn woman. And I think if she learned how to like, cultivate that better. She'd be a very, very, like, intellectually

Scott Benner 1:02:45
successful person. Yeah, I mean, look, what yeah. What part of the country did you grow up in?

Melanie 1:02:50
I mean, live in New Mexico,

Scott Benner 1:02:52
New Mexico. Okay. All right. I don't know anything about it. I was just interested to hear. Holy hell. Let's take a breath for a minute. Melanie. This is a live demo, right? It was a lot. I thought you were gonna come on and talk about moody and I was gonna go like, I don't know what moody is. And then it was gonna be over. But instead, we learned about life. I mean, I love it. It's a great podcast, everything that looks different. Listen to it sometimes ago. I know it's a diabetes podcast, but it's really not.

Melanie 1:03:22
No, I agree. I agree. And, and I fully believe that, like I kind of said at the beginning, we can't compartmentalize our health. And a lot of times people want to put their diabetes in a box, whether it be it's for them or for their kids, or, or whatnot. And what I just had to learn, and this is something that I've had to process with the ever present reality that one or both of my kids could have what I have is, I've had to already start processing in my mind. How do I teach them to have an okay life? How do I teach them that their diabetes is not everything? And we try to just think that it's all about just fixing the diabetes. And we don't realize that your mental health matters as much as your blood sugar's maybe it's not as immediate, right? Like, you can't die from a mental hypo. But it lingers with you. And it stays with you. And when we're helping the people around us kind of going back to how do you how do you help people, you cannot leave out the components of how was their mental health? How, how is this affecting their view on the world as a whole? Right, like, I had to realize down the line that a big part of why it was so hard for me to get medical help is I had this idea in my mind that I was not worth spending money on. My parents didn't have a lot. And I thought if I had to spend our money on medical things that I was a burden to our family.

Scott Benner 1:05:04
Oh, you were a drain if you did that, yeah. And so

Melanie 1:05:07
all those thoughts are so real. And we can't neglect those and we can't neglect addressing them with ourselves and with other people, too, is reaffirming for them, you're not a drain on this family. Like you have no reason to be feel guilty for this, like I spent years feeling guilty, like I would even i There were times I would tell my husband, I'm so sorry, that I'm I'm such a drain on our budget. And it was just like, it stems into everything. And so we can't just put it in a box and say, let's fix the problem. You have to say,

Scott Benner 1:05:45
I'm sorry to cut you off. I apologize.

Melanie 1:05:47
No, I was just to say we have to look at the external elements as well. How is this affecting my view on my finances? How is this affecting my relationships, right? Because it can become very easy as well to start viewing yourself as the problem child, or they just have to take care of me and we start viewing ourselves as diabetes and not as a person in the family

Scott Benner 1:06:13
sort of comes back around to what we said earlier about wanting to help somebody and I never considered that you would make that person feel like a burden, because they they were somebody you looked at who felt like they needed help even. Yeah, yeah, I really appreciate you bringing this up. I mean, I recorded I don't even know how many podcasts at this point, probably like 650 of them. And this just never come up. Like no one's ever used. Like I just seriously. I believe that people who grew up in a hard way have so much to share. And they don't get an opportunity sometimes to share it. So I'm really glad that you're here talking about it. But just in general, like the idea of not feeling worthy of having $1 spent on you is I bet you're foreign to a lot of people and probably very real to more people than you would think.

Melanie 1:07:05
Yeah. Especially if you grew up with tight was tight funds. Yeah. Right. Because you see, you see the budget and and for my husband and I we've worked very, very good with our money. We budgeted always because that was just the adult thing to do. We didn't know why we just did it. And it panned out well for us. But actually seeing those medical expenses on the budget, and I still I still struggle with it to this day. Because medical supplies even with insurance are not cheap.

Scott Benner 1:07:35
Oh, Melanie, I feel broke no matter how much money I have. I could have an amount of money and double it. And I would still feel broke. And exactly I grew up after my dad took off when I was 13. My brother Brother eight, my other brother three. So three 813 My mom went to get a job because she'd only ever had like this part time job for like extra money. And she went to them and said like, I need full time hours now like Yeah, great. But she worked in like a private clothing store. Like by private. I mean, like it wasn't part of a chain. And I remember she was making $3.75 an hour. And so that was probably an ad three ish, right. And I remember when she got to raise to four and a quarter and how excited we all were. And I remember that there were times where we had like a number. I think it was like $60 We could spend on food a week. We were relying on we rented a home. And but it was a home that was owned by a church. So it was like the parsonage that they didn't use. So they rented it out to us. And we lived in it for years, like for a long time. But then my dad left. And the entire time I lived there. They never raised the rent. Wow. So by the time I left, by the time I moved out probably seven or eight years later now into like the early 90s. They were still charging my mom $300 a month to rent a three storey house that had four bedrooms in it. Oh, wow. Because and without that we wouldn't have made it. That's crazy. Like and so like when you hear tight budget, like understand what that really means. It doesn't mean like, you know, like you can't get a PlayStation when they make a PlayStation five because it's expensive. Like it meant like we didn't have anything. Yeah, yeah, like Christmas was a Christmas we got things we need it because you just did what Christmas was was the things you needed to survive wrapped in paper. Exactly. I mean, it wasn't quite a can of soup wrapped up but you know if you needed a jet if you needed a jacket, you know you got you know if it got cold in October and you're out had outgrown your jacket. Well, you just stayed cold till December 25. So mom had something to give you on Christmas. Like Exactly, and that's even lucky for a lot of people.

Melanie 1:09:54
Mm hmm. For sure. I mean, I I totally get that. Like I don't I think I can count on one hand the amount of like, new things I got as a kid, you know, and it was just an even then there was so much guilt around it. And it's just real. You know that. Yeah,

Scott Benner 1:10:15
everything that happened in my life, I thought, how are we going to pay for that? Everything didn't matter what happened is something broke. It was like, well, that's gone now, because we can't replace it. Or if something had to happen, I don't know how we're going to pay for that. It took me years into my adulthood not to feel that way. And I and like I said, I still feel broke in my head. And I'm not. And I still feel like I am. Ironically. And my bigger point around this was going to be that broke, people have great perspective. And they and they know how to get they know how to get around and through things. And one of those ways that I'm going to tell you, you know, is a happy story is that the success of this podcast is partially due to the fact that I grew up broke. Because when I see downloads, which mean people listening, it never feels like enough to me, wow, like, so it's the same as the money like I never feel like I have enough money, because it's all gonna go away, or we're going to lose it or I'm not going to have enough. And the same thing about this like as so it translates well into helping people with diabetes, which of course also coalesces nicely into my feeling that I have to save everybody. So. So it works out really well. So like when I get hundreds of 1000s of downloads in a month. I think that's a really cool, it could be more. It's my first I never feel done. And I think that's why part of the reason why the podcast is still growing, because I still push at it like it's not successful.

Melanie 1:11:42
Yeah. And it's, it's, I found is such a fine balance. Because that backstory is what can drive you to be successful. And it's, it's important to never forsake that part of your life, like I have grown up to be very resourceful. Because I had to be, like, I bought, I started buying my own clothes when I was 13. It's just what it was. And that has made me a very resourceful person, like, I can take anything and turn it into anything else. I'm just I'm confident of that. But at the same point, it can also trap you in a mindset of, like you said, feeling like it's never enough, and you can never be enough and you can never reach enough. And so it really is this balance of learning how to take that, take the heart of the hardship, and thrive on it. But allow yourself to become new mentally and say, This is not where I have to stay.

Scott Benner 1:12:39
Ya know, I feel that like I, you know, there are weeks sometimes when I just sit here for hours and hours and hours a day for six days a week, and I don't think anything of it, because it's so much easier than the jobs I had when I was poor. Yeah, like, it doesn't feel like anything to me. I'm like, it almost feels like a dream. But at the same time, I know I should probably not be working this hard at something, but I'm not going to stop because then you also get the feedback from it helping people like look, you came off you talked about like, we haven't really talked about it today. But I made a thing and you're living healthy because of

Melanie 1:13:13
it. Exactly. And that's something I hope you're proud of.

Scott Benner 1:13:16
I am very much so thank you. But yeah, I'm not gonna, I don't know, I probably don't know how to stop. But I think that's important because this can be it can become tedious at some points, like you are the third person I've spoken to this week. When I hang up with you. I'm gonna have to say goodbye in a second. I have like 10 minutes, and then I'm gonna record another episode. Wow. So and then I do Jenny tomorrow, and there's editing tonight and editing tomorrow. And it just it really doesn't like it doesn't stop and I love it. Like I genuinely genuinely love it. But I don't think I could have done it if I would have grown up with money and with comfort. I know that sounds really strange. But

Melanie 1:13:58
no, I totally feel that and that could lead us down a whole nother rabbit hole. I know you don't have time for it. But I think that's a lot of why some people are so married to this idea of not helping other people is because they think that you need hardship and in a way you do but then you have to weigh the pros and cons Yeah, okay, well, which hardships like

Scott Benner 1:14:19
not only let me say in fairness, I believe that if I could have afforded to have my teeth cleaned as a child, my lifestyle would have been hard I'm not saying to pick people up and carry them along because I don't disagree either. By the way that you don't need the hardships actually there are people who don't have any that probably could benefit from some of them. I spent a lot of time as I had kids wondering where my kids hardships were going to come from and sometimes trying to not work history at them, but when they when I saw them have trouble I was like let them sit in it for a while. You know, like like that kind of thing. So I'm with I'm I don't not believe that. I think it's important I think pressure creates diamonds etc or whatever. But at the same time, I mean that pressure doesn't have to be a cavity in your mouth that you can't get taken care of. That's exactly silly. It doesn't have to be that you have diabetes when you're 10. And you can't afford insulin or, and I'll, I'll use this example. And it's outside of the United States. So people might, you know, like, dismiss it. But years and years ago, I spoke in the Dominican Republic, where, if you were diagnosed very early with diabetes, like super early, 234 years old, you were dead by the time you were 12, or 13. You know, and so, you think that can happen here? You don't think it's happening to people here? I bet you it is. Yeah, absolutely. So, alright, Melody, this has been an upbeat conversation. Well,

Melanie 1:15:43
I appreciate you, thank you so much for having me. And it's it's been such a joy. And I wanted to tell you, though, one one last funny thing, please. I always listened to the podcast on like two or three speed, just because to sit more, more in my day, right. And so it's it's so interesting hearing you talk at normal speed. I

Scott Benner 1:16:01
can't believe this seems normal to you. Because most people are like, Oh my God, you talk so fast. I sound like a two times speed off the listen and find out. You just have a little higher pitch just a little bit changes my pitch, just ever so slightly, but the resonance in my voice is my favorite thing about my voice. You can't take that from me.

Melanie 1:16:20
Okay, it will make you feel better. I'll listen to one UFC

Scott Benner 1:16:23
waste more time in your life for me so that I can feel better about something that I'll never know is happening or

Melanie 1:16:28
not compensate for not naming. My daughter's got it? How about that?

Scott Benner 1:16:32
Listen, you could just call the kids Scott. Or you could go with Mike, you could go with my middle name. What's your middle name? I would never say that on here. So

Melanie 1:16:41
almost got it.

Scott Benner 1:16:42
It is such a terrible name. Anyway,

Melanie 1:16:46
I appreciate you. Good luck on your next recording. And thank you so much for all you do. I really do appreciate it. And I know it's made a big difference in my life. And it will be for my daughters. Hopefully they don't have to ever deal with it. But at least they'll have an understanding and have empathy towards other people.

Scott Benner 1:17:01
That's very kind of you. I guess I don't want your 20 year old daughters to have to listen to a 70 year old me tell them how to Pre-Bolus

Melanie 1:17:09
Don't worry, I'll take care of that.

Scott Benner 1:17:11
I'll be talking slower by then.

Melanie 1:17:14
Then we'll speed it up,

Scott Benner 1:17:16
then you're gonna have to hold on one second for me. Okay. Okay.

I want to thank Melanie for coming on the show and sharing her story with us. And I'd also like to thank Omni pod and US med for sponsoring this episode. Go to us med.com forward slash juice box to get started today with us man. Or you can call them at 888-721-1514. And of course on the pod dash on the pod five and all the good on the pod stuff we talked about. Is it on the pod.com forward slash juicebox. Links to the sponsors are in the shownotes of the podcast player you're listening in right now. And it juicebox podcast.com.

Don't forget if you're enjoying the show to share it with someone else. If you're really loving it, leave a great rating and review wherever you listen. And if you're looking for that private Facebook group, it's on Facebook. That's where they keep all the Facebook groups right there on Facebook. And it's called Juicebox Podcast type one diabetes. It's a private group. I think that's all I have for you today other than to say don't forget to go to the T one D exchange and take the survey T one D exchange.org. Forward slash juicebox. I'll be back very soon with another episode of The Juicebox Podcast. I really appreciate that you listen today. Thank you

#706 Bold Beginnings: Adult Diagnosis

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Test your knowledge of episode 706

1. What is the main topic of Episode 706?

2. What common issue do newly diagnosed adults often face?

3. Why do some adults fail to get immediate testing for type 1 diabetes?

4. What type of test is often missed at diagnosis for adults with type 1 diabetes?

5. What advice is given to adults newly diagnosed with type 1 diabetes?

6. What did Scott and Jenny recommend about diabetes technology for adults?

7. What is a common feeling among newly diagnosed adults?

8. How can newly diagnosed adults find support?

#705 Episode Full of Grace

Grace has type 2 diabetes... or does she?

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#704 Mature Onset of Young Love

Melanie has MODY diabetes and is here to share her story.

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