We don’t know what we don’t know

This week, Jill talks about the importance of being your own advocate and arming yourself with the right info to have successful doctor’s appointments.

Jeff Sarris Welcome back to the Kidney Stone Diet podcast, the show about reducing your kidney stone risk–wow, so I have three different podcasts and sometimes my brain just wants to say a different intro. But this is the Kidney Stone Diet podcast. It is about reducing your kidney stone risk and living your best life, and I am your host and fellow student, Jeff Sarris.

Jill Harris And I’m Jill Harris. Usually, you listen to me screw up, so it’s very wonderful that I’m just sitting back smoking a cigarette, watching him screw up for a change.

Jeff Sarris That would be so funny if we were here just smoking.

Jill Harris And talking about a healthy lifestyle.

Jeff Sarris Yeah, there you go. But yeah, this is all–we just we have fun here. We take the serious stuff seriously, but ourselves–this is just like, it’s how it goes. This is a conversation about kidney stones.

Jill Harris Jeff, many years ago–this is why I love doing this work–I would listen to all kinds of videos, right? That’s why we opened up the YouTube channel because we both love YouTube. And it’s a great tool for people who want to learn things and it’s free for people! I’ve learned everything. from changing my toilet plunger thing to cleaning my stove, the burners. I just get on my YouTube and I’m like, “What?” Pause, “What am I looking at?” It’s a wonderful tool. I love YouTube! What was I saying?

Jeff Sarris Just how much building this channel means to us and why we sort of pursued it.

Jill Harris Yes, thank God for you. So, anyway, I like listening to health stuff. I go to Mayo Clinic, whatever. And I’m like, “Oh, my God.” When you said, you know, we take what we do seriously, but you have to have fun, too. I mean, it’s very difficult to learn when it’s just so friggin’ boring. That’s just my humble opinion. Y’all might like that kind of delivery. I’m certainly not for everybody. We all know that. I’m a certain kind of girl and I’m not for everybody, but if I’m going to learn about something really serious, I want the right information. It must be clinically correct, but I also want it to be entertaining a little bit because I’ll understand it better. That’s how I think, you know. I don’t know, I could be way off base.

Jeff Sarris I mean, that’s how I feel, too. A lot of times–I’m not talking about medical or anything–but when it comes to YouTube, in general, or any sort of podcast, sometimes people miss it that like this is entertainment. It’s edutainment, you’re learning, but you’re choosing this one because I feel good watching, listening, whatever it is. So I think there’s a ton of value there because we want people to come here, realize they’re getting a ton of great information, like all the actual scientifically valid info from your 22+ years of experience, but then, also, they leave here hopefully with a smile on their face and like feeling good, just better than maybe they felt when they arrived. That’s sort of why we made the tagline, “reducing your kidney stone risk and living your best life” because we want people to feel good, obviously, in terms of like the pain and everything, but also just overall.

Jill Harris Yes, absolutely. You know, me as a stage four cancer patient in remission, I never wanted to really–when I got sick, I was really scared. You’re just scared. You don’t know if you will live or die and, in my case, that’s the truth, that’s not dramatic. When you’re learning everything, of course, you want a credible source, but you also want somebody that you’re going to be able to understand, and that you can feel, you just can feel. You want to feel that person, right? So, I think for me, as a patient, it was very important to be able to connect to my caregivers. So, I want people to feel like they can connect to us, and that this is a safe place for them to come, and just feel a little of the burden of being sick just taken away.

So it is a very fine line of having a nice time, but also getting the right information to people. It’s a tricky–you don’t see this often because it’s a very fine line. I feel really proud that we’re able to do it the way we, first of all, want to do it-what is our instinct and what is our nature as two people? I mean, look, Jeff and I can’t come on here and be two different people because that’s not who we are. We work for ourselves. We don’t have to answer to anybody, so we are going to be who we are and that’s very valuable to us as human beings. So, there is just that, so if you’re not feeling this podcast, then yeah, you better click off because it ain’t never gonna change. I think it’s just important when you’re not well just to have human connection and feel like you’re being seen, and validated, and heard. Because, as human beings, that’s the number one thing we want. We want to be seen, right? So, I think that’s very important. And that’s why we run this channel the way we do, and why we run everything the way we do. It’s very important to us.

Jeff Sarris And it’s so much about community as well. Even when you have your group calls, when you have the Facebook group, all the things there, it’s bringing people together with like experiences. We’re hoping to facilitate that to make it a place where people actually want to be because they get value on multiple levels out of being in this community.

The Value of Asking for Help

Jill Harris In the Kidney Stone Prevention Course this week, during the accountability calls, we were talking about being courageous and–again, viewer, please know that this has to do with you. So, we’re talking about being courageous. To me, once I did get sick, I really learned the value of asking for help because I was never good at it beforehand. And when you’re really sick, you have to ask for help. You don’t even have to ask for it. You just need it. You know, it’s obvious you need it, right? And we were talking about in those calls, how, you know, I’m always so proud that people come to those calls and actually, like, people stay in the accountability group, they’re kidney stone formers, but they also want to lose weight. And so they come, maybe you don’t see them for two weeks. Typically, when someone goes away for two weeks, I’m like, “Oh, it ain’t going well, for that person,” right?

And then, all of a sudden, they come back on the call, and they’re like, “Here I am! I’ve been away for two weeks. Let me tell you what’s going on.” That means they fell off the horse. And so I take that so seriously, that someone is able to come into that Zoom meeting, and say, “I’ve screwed up and I’m here to ask for your help and your motivation, not just for me, but all the group members there.” And I can’t tell you how wonderful it is. It’s just what we’re trying to do is create a community for people who are sick, for people who need to lose weight, for people who are trying to make lifestyle changes, so they can feel better, because nobody wants to live a long time sick. That’s not fun.

So, that we’re able to bring people together and have a safe space in order to talk about where they screwed up, how they’re going to get back on track, laugh, cry, all of it, it’s–besides my son–the best part of my life. The end period. So, it’s a wonderful thing. The Facebook group has almost 14,000 people on it. All people there to motivate, you know, bring everyone together. “Here’s what’s going on. Here, do this.” Everybody talks, you know, it’s just it’s wonderful to see it grow so much. I’m very appreciative. We’re both very appreciative, too, for everybody who makes a comment on this YouTube channel. We’re trying to foster a community here as well. So everybody who does that, people who call in and leave a message, we just think you’re awesome. So thank you so much. We really appreciate all your feedback, your input, and that means, too, if if there’s something you don’t like, you can certainly talk about that we’re open to everything.

There was somebody who sent me an email this morning and they said, “I subscribed to your YouTube channel, but I thought you might like to know, I don’t agree with everything you say.” And I wrote him back and I said, “Well, please, let me know what the things you don’t agree with because you know, I’m here to learn, too.” That’s fine by me. I don’t think anybody should be here and agree with everything I say. Who the hell am I? I’m just giving you my opinion on things. And, of course, all the things on kidney stone stuff, well, that’s just drenched in science on my mentor’s site at kidneystone.uchicago.edu, Fred Coe, C-O-E. But as far as my, you know, practical advice, these are things that, in my humble opinion, have worked for patients for over 23 years, so I just go with it. I’m not here to tell everybody, all the things that I’m 100% right. So if there’s also something that you’re like, “I don’t know about that one, Jill,” feel free to write me. That’s not a problem. I love it.

Jeff Sarris Absolutely. This is all about growth all around, like internal and for the community. So yeah, every every piece of input is so valuable and all the people–real quick! We hit that milestone on YouTube that we were going for!

Jill Harris Yes! 5000 subscribers! Right now, we have–because I have this contest going on–we have 5,018 subscribers. So we made over the 5000 today and that’s May something, I don’t know, May 28. So, you guys, thank you so much. We are so happy we made 5000! It was just something we wanted to do. One of the patients on Facebook was like, “Okay, let’s go for 10!” I’m like, “I think I’ll give you guys a break and I won’t be barking about, you know, subscribe to the YouTube channel!” So, yes, subscribe, because that is going to be our next goal. 10 grand. Because why take another breath if you don’t have goals, people. So, Jeff and I are really excited and we want to thank you for your support so much. It means the world to us.

Jeff Sarris Absolutely! So, with that, should we dive into today’s voicemail?

Jill Harris Yeah, I guess so.

Listener Voicemail Hi Jeff! Hi Jill! I heard you miss me, so here I am. I may sound a little out of breath. I was just at the gym doing my workout, but I just want to tell you about my day yesterday. I was out to lunch with my friend Sharon and we’re both on a diet so we went to a restaurant for lunch, and she ordered her salad. I order soup. She orders a spinach salad and I said, “Sharon, you shouldn’t have spinach,” because Sharon suffers from kidney stones, by the way. “You shouldn’t have spinach.” She said, “Why?” I said, “Oh, it’s something about oxalates. I don’t know. Just don’t have it.”

So she orders another salad. On top of that salad comes from slivered, what look like, almonds. I said, “Sharon, you’re not supposed to have that.” And she said, “What?! Why?!” I said, “I don’t know. Just don’t have it.” So she took the nuts off the salad, we ate the salad, we drank our wine, we’re leaving the restaurant and I said, “Sharon, instead of wine, we should have been drinking water.” Sharon said, “You’re walking home.” Now, am I ever gonna see Sharon again? I have no idea. I’m doing my job trying to solve the world from kidney stones. Sharon has suffered major problems with kidney stones. She says it’s pain she can’t believe. So, I’m helping out. This is mom. See ya!

Jeff Sarris Your mom is awesome.

Why, as a Patient, You’re Responsible for Your Health

Jill Harris My mom is awesome. Unbelievable! So, look, the first time she called in, I said all she had to do was get the cahonies to do the first call and I knew she’d be a regular on the show. I don’t know she’s gonna call in, people. These are always a surprise to me. I don’t know what’s going on until Jeff plays it. So, first of all, yes, my mom, like my my little dog, my mom is very little. My mom is a pip and the nut don’t fall far from the tree. So, I love that she’s trying to help her friend, Sharon. Here’s the interesting part: many people, many people will say this is the worst pain they’ve ever had, they can’t believe everything they’ve been through, they say it for years–obviously, Sharon has been through this for a long time.

Obviously, her doctor’s not telling her much because if the doctor said one thing to her, the doctor should always say drink more water, but you would think out of all the things the doctor should say, watch spinach and almonds. Do not eat them. Sharon is a big-time kidney stone former. It’s not like it’s just her first time, so you would think that she would know spinach and almonds. So it’s very important. This is why we do this show because if you just happen to go to YouTube and say “kidney stones,” we want to pop up. We want to educate people that are not getting the education to prevent kidney stones.

How is she going out to eat with my mom and she doesn’t know that she can get kidney stones from spinach and almonds? It’s ridiculous. So, that is why I’m so passionate about this. It’s just simple things like that, that a healthcare provider can be telling a kidney stone patient, a chronic kidney stone patient. Also, one would think–people may not like this, that never stops me–one would think if one has suffered so incredibly much that one will would Google something and try to find out some information if they’re not getting it from their doctor or healthcare provider? So, there’s that, too. I’m just not going to pin this on doctors.

We as patients must be our own advocates. If I kept getting something over and over and over, I would find out. And you may say, “Well, you’re a freak!” No, how do people find me? First of all, a lot of doctors refer patients to me, for sure. The doctors know me. They say, “Go talk to that loudmouth over in Chicago. She’ll set you straight.” But, also, people Google, and they don’t want another stone ever. So they take it upon themselves, and they find me. And that’s how they start their journey. I educate them, so that they can go have a discussion with their doctor. When you are an educated patient, doctors will pay attention to you more.

So, doctors will say, “Jill, nobody wants to change their diet. I’m not giving a urine collection. I’m not going through the hooplah.” They are not wrong. Many people don’t want to change their diet and that is that patient’s choice. So there is a huge segment of people that don’t want to change their diet, and doctors, they’re over it. It’s like, “Why am I wasting everybody’s time? Nobody’s doing anything!”

But–there’s a big but there–if the patient doesn’t know they have some control, if the patient doesn’t know they can do something, they may not understand to ask. Many patients come to me and they say, “I didn’t know I could do something about it. I was just told I was a stone maker.” I can’t tell you how many times I hear that a day. So, if the education is out there, and people are willing to seek it out for themselves, then we have solutions to a very big problem. We can begin a conversation, the education can start, you can talk to your doctor in a way that the doctor will say, “Hey, Timmy over here knows what he’s talking about. Let me sit down, let me cross my legs, let me lean forward, and let me talk to Timmy because he’s interested. And I’m interested in helping.”

So it’s complicated, guys. I’m not blaming anybody. I’m not blaming you. I’m not blaming your doctor. I’m just saying, this is always such a bigger problem. It’s not just micro, it’s big. It’s a big problem. So we, as patients, don’t know what to ask for unless we know that there’s possible questions to ask, right? So that’s very important. Now, as far as my mother and Sharon, first of all, Ma, you and that wine in the middle of the day, I don’t know about that. I’m kidding. And my mom just turned 80. She won’t like me saying that, but my mom is like 30 so it doesn’t matter. She doesn’t like birthdays, so I certainly did not make a big deal of it, but I just want to publicly say, “Happy birthday!” May 19 was her birthday and we hope to have you for another 80 years, old lady. We love you.

Jeff Sarris Yeah, happy birthday! So, real quick, I just wanted to jump over to the site and show the “Start” page where we do have the–you can find the section you see on the screen now want to know what you’ve learned here with a doctor. So it’s a flyer that will sort of help walk you through just being better educated for your first appointment, or maybe your 10th appointment, whatever it is just to sort of get you on track so you can have those great appointments with the doctor and they see that, “Okay, this patient is in it to succeed. They’re going to do what it takes to get there.”

So that’s just at kidneystonediet.com/start, where you can find that one with a ton of other resources everything else we have on the site. We have so many free resources along with the the weekly email that Jill sends out every Saturday, just so much stuff on there, absolutely free and then a few premium premium products, like the course and meal plans and whatnot.

Jill Harris Yes, and the urine analysis call, which is the most popular thing in the world, because as a patient, I made that service. If you’re going to your doctor’s office, you want to be prepared with your urine collection results. So I teach you what they mean and then you go have an educated appointment with your doctor. You’d be surprised how great your treatment plan winds up being. With a great treatment plan, you stop making stones. So, it’s a very valuable service for a very reasonable price as always.

Jeff Sarris Absolutely! All of that is at kidneystonediet.com, and you can find that there. You can find the Facebook group, you can find all of the resources, which are plentiful. I think that was a great voicemail for today. If you have a question, if I’m losing my–this is one where I’m just falling apart, huh?

Jill Harris You really are. I love it. I’m glad it’s not me!

Jeff Sarris But if you have a question and you want to be featured on the show in a future episode, the number is 773-789-8763. We would love to have your voice and, again, thank you everyone who’s subscribed, commented, hit the little bell to notify, or told friends and people who need this information because it really it goes a long way and it really helps us reach as many people as we can.

Jill Harris Everybody knows a kidney stone former and that’s true. There’s somebody they know Fran or Olly or somebody and, mom, we love you very much here at kidneystonediet.com

Jeff Sarris Absolutely! It’s so much fun every time we hear from you. So, I think with that we will wrap for this week. Thank you, again, everyone and we will see you next time!

Jill Harris Bye!