Spoonie Chats

Ever wondered how innovative tools like trainer chopsticks can transform your daily life with a chronic illness? Join us, your hosts Jen, Ali and Andi, as we share our personal experiences navigating these challenges and discuss the inspiring lifestyle of Okinawa, Japan. Discover the secrets behind their remarkable longevity, from embracing community to pursuing passions that spark joy in everyday life. We reflect on how finding fulfillment in work and fostering a supportive circle can significantly boost well-being and promote longevity, drawing inspiration from the Okinawan way of living.

Prepare for laughter as we venture into the whimsical world of Giant Microbes. From dopamine and serotonin to the more peculiar mad cow disease and sperm cells, these Giant Microbes offer a humorous twist to gift-giving. We imagine the hilarious reactions they could provoke as earrings. Adding some groove to the mix, we explore the empowering potential of belly dancing. Plus, we’ve got some insights on wellness tracking tech, like the Guava Health App, Whoop band, and Aura Ring, alongside a light critique of social media’s tendency to miss the point. Join us for an episode filled with humor, insights, and a strong sense of community.

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

Chapters

• 0:00 Joyful Chat About Various Topics
• 7:59 Funny Conversation About Microbe Plushies
• 12:35 Wellness Tracking and Social Media Criticism

Transcript

Jen: 0:08

Welcome my Spoonie sisters. Today you are here with me, the one and only Jen, and Ali and Andi Hello, ladies.

Andi: 0:17

What up?

Ali: 0:17

Hello, welcome to our random Friday. Yes, I'm excited to be here. I'm having a lovely morning. Well, actually it is a Monday when we're recording this and I didn't set my alarm this morning, so I'm off to a bad start, but you know my alarm this morning.

Andi: 0:34

So I'm off to a bad start. But you know, I'm off to a great start because my day started with a 60 minute sports massage, followed by the chiropractor, and then I came home and I made some kimbap with my hands that I demolished Okay, because my back is huge and I needed the snack, needed to put something behind my ribs.

Ali: 0:51

My day's been swell I want your day tell us about this thing you're holding oh so listen, I'm international traveler.

Andi: 0:59

However, this international traveler has crap dexterity in her hands. Okay, gotta love autoimmune diseases, but I was trying to find ways to still be able to do the things that I love on the days that my hands are really shaky, and I super love asian food and use chopsticks so that I could not lose any more dexterity. But when your hands are kind of shaky, that's really frustrating. Amazon Edison chopsticks they make trainer chopsticks. They are very arthritic or I can't, I have very limited mobility. Friendly, they have finger holes. Slide it on in there. See that, ali, you were paying attention. You saw that. Okay, all that. That's perfect for my club. Yes, and then and then we just only thing that moves is one finger and your nice little thumb grip. We get to relax.

Ali: 1:45

Nice little thumb grip, we're just chilling zero work, get more food in your mouth yeah, it reminds me of little kids scissors yeah yeah, yep. Or like the trainer, chopsticks like yeah, yeah, yeah, that's nice but this is way more practical, way more practical. Never comes out your hand what do people in japan do with arthritis with their in their fingers? They just pick it up. Oh yeah, true, yeah, I'm not making it up. No, I don't know, I mean I'm curious like that would really hurt, like using the chopsticks.

Andi: 2:13

I wonder how statistically someone Google what is the arthritis rate? Percentage rate in Japan.

Ali: 2:21

Let me ask Chachi PT Hold on, she's on it While you're looking it up tell us about this balloon behind you Me, yeah, you have a balloon against the wall. I think it was for my boyfriend's mom's retirement anniversary. Well, she's not retiring, but she got all of her hours in film and so she slayed, so they got her a balloon. I believe that's what it's for.

Ali: 2:42

What is the percentage of people we're saying in Japan, yeah, are we doing chronic illness or rheumatoid arthritis With rheumatoid arthritis? I'm actually really curious. So in Japan, actually fun fact, I read this book called Ikigai and Ikigai Ichi or something, and in Japan, mostly in Okinawa, is where the people live the longest. And so these people, these like scientists from I don't know if they're scientists or somebody from Spain went and studied them, like to see why they live the longest on the planet in Okinawa. So let's see, japan is estimated to be around 0.5 to 1% of the population, similar to global averages. This means approximately one in 100 people in Japan might have RA. I feel like it's more in the States.

Andi: 3:25

No, I feel like it is. I feel like it is more in the States. Hold on, let me fact check over here, see what it is.

Ali: 3:32

On random fact for you guys, my brother was in the Marines and he lived in Okinawa for two years. See, he might live longer, possible. Yeah, they just like they eat well, they move and they do what they love, like they find what they love and I think, like Ikigai, I'm probably saying it wrong, but it's like find what you love and they do it until the day they die.

Andi: 3:57

So they don't really like work and they all work as a community, like they all help one another which is not so, jenny, when I kept telling you it's not supposed to feel like work, your job's not supposed to feel like work. That's why they're living so long. You should be able to do it and it bring you joy. The minute it starts to tax you and it starts to feel like a chore, it means that you're not as aligned to it anymore and it's probably time for you to grow out of that box and exit stage left and grow into another planted box or whatever. But the minute it starts feeling like working is giving you more anxiety. That is giving you joy. It means you're not aligned to it anymore. You've outgrown that space. That person, that, whatever shoot at the deuce Peace signs.

Ali: 4:35

This podcast brings me joy. I'm going to live forever, exactly, really, if you eat well and move. Literally they don't eat like a crazy, insane diet, they just eat well. They have community, they have friends. That was also really important. They meditate and they love what they do. Like they said, like in their community, a person who loves to cook will cook for all them. A person who loves to hike up the mountain and grab a certain thing and bring it back down, does that. Somebody who does like makes the pots in the clay, like they love to do that. So it's like, yeah, if you do what you love, I mean naturally you'll live longer. You know, I love this, yeah.

Andi: 5:10

It sounds like a whole community of people minding their business, and getting along. See how that works when we mind our business and just do the things that bring us joy without being buttholes. You just mind our business.

Ali: 5:22

We need to all go out and watch the icky guy now. Yeah, yeah, go. Yeah. It's like finding your icky guy, like what brings you joy in life and makes you content. So, yeah, it's really peaceful. I love the book. It's really. It's an easy read too. It's really tiny, and listening to it's nice too. Ooh, I'll check that out. Yeah, I have been binge watching right now. It's a show I've watched before, but younger. I've never heard of it. You all gave me this crazy look Like what are you?

Ali: 5:56

talking about? I've never heard of it. It's about this woman in her 40s that her husband cheated on her and left her and she wants to get back into uh, the publishing arena again in new york city and she's having a hard time getting a job. So what does she do? She tells everyone she's 26. Now, that's not the part Hillary plays. She, she's the friend that is a millennial. That is 26. I don't know it. You know it's got sex, it's got all the fun stuff. It's a show.

Andi: 6:25

So the thing is, I snickered because I said man, that sounds like previously recorded my husband teases me.

Ali: 6:39

He's like when I go to bed, you just watch smut, wait. It came out in 2015. Yeah, well, okay, wait. So it also would be why hillary duff is in it, because what has she been in recently? That's why I'm saying you said hillary played 26-year-old. I was like that doesn't make sense, but it got 97 on Rotten Tomatoes, so I don't understand Rotten Tomatoes.

Andi: 6:58

Can somebody explain this to me?

Ali: 7:00

Because to me that should be a negative thing, right? Oh no, rotten Tomatoes, you want to hide.

Andi: 7:05

And the tomatoes aren't rotten, they're fresh. I'm very confused.

Ali: 7:08

I know. Is it Rotten Tomatoes, where it's like people in the industry are rating it, or is it the other way? I think it's like people in the industry. I think so yeah, okay yeah, because it's people in the industry, because then the popcorn meter, I guess, are randoms. I don't know.

Andi: 7:26

I could be wrong Popcorn meter.

Ali: 7:28

Okay, I feel old. How do I not know this stuff?

Andi: 7:30

I do still have dial-up AOS.

Ali: 7:32

I do not. I promise I have Xfinity, but I hate that one too. I should know because I'm like in the film world. But yeah, we use Rotten Tomatoes and also Letterboxd. We do shows, though. They just do movies. I have a random thing to show you guys. I haven't posted my little video clip to my social media yet. The company that sent me this amazing, fun little box of goodies and we're going to do a giveaway on Instagram. They are called Giant Microbes. Have you guys heard of them?

Andi: 7:57

I think so yeah, you can shout to me.

Ali: 7:59

Okay, okay. So I have a giant anxiety. I need that it's better. Here's my dopamine oh what? And then I've got arthritis. Oh my God, I need that. They even sent me this little tiny kit and they're all on keychains and it's got a brain, dopamine, serotonin, glial cell and a neuron.

Andi: 8:21

Oh, here I am, over here with just my little pill, you know.

Ali: 8:25

Is that from the same company I love?

Andi: 8:27

it. It's my happy pill.

Ali: 8:28

That sounds like a haunted house. Well, is that? Laughing like your side effects are gonna be shit. Okay, are you guys ready for crazy? This is, this is how many they have dude holy moly, we were talking, we don't know what happened. I mean, can you imagine how many there are?

Ali: 8:45

I need this in my life I mean it's like a random thing and I'll tell you if they have it, they have mad cow shit. They have a sperm cell crazy, I need those. I need that just for shits and giggles. They have a tick. Oh, how about the leg line?

Andi: 9:01

because I'm a child and I would just throw the sperm cell at people because I'm a child and I'd be like, okay, sperm cell. They have Ebola a hip replacement. Oh, I got a friend that could use one of them.

Ali: 9:12

That's me measles, a flesh-eating virus. Oh lovely, oh, I wonder what that looks like. It looks like this little blue thing right here, okay, like a thyroid like a thyroid like a thyroid. Yeah, they have um. What's another funny one?

Andi: 9:32

do they have? Or a? Or do have IBS.

Ali: 9:36

Let me look.

Andi: 9:37

Let's see. Or like Crohn's. Now I'm just trying to see if it's an intestine. Is it a colon? What are we doing?

Ali: 9:44

They have Crohn's and colitis. What was the one that was started with? I that I'm looking for IBS?

Andi: 9:48

Irritable Loss.

Ali: 9:49

Yes, they do.

Andi: 9:51

Are you serious, they?

Ali: 9:52

do Is it a rectum, because that would be great. It looks like this oh, it's the intestines. Yeah, yeah, um, what's another good one? They have a name replacement.

Andi: 10:04

There was one I told my stripper names would be hilarious with the plushies okay okay, there's earrings.

Ali: 10:11

Are you ready for this? Oh my god, herpes and chlamydia.

Andi: 10:14

Nope, nope, I would so wear those, just because they're hilarious.

Ali: 10:18

They have to be cured. Brain cell earrings yes, everybody needs that. Send it to government. Here's some brain cell earrings. We thought you could use some of those. They have a kit that's biohazards. I like that. Ancient plagues, superbun packs what are they called? Again, they are are called giant microbes, and so I made a video. I'm going to ask everyone what they would want to see in a giveaway. So if you were going to win something, what would you guys want? Arthritis one? Well, yeah, I want anxiety. I got an email from them, but I didn't. I don't know, I can't find it now. They're super approachable, easy to talk to, so reach out to them on instagram. Okay, this is the one I told my daughter about the grossed her out bed bugs. Why would they make that?

Andi: 10:58

see. The thing is I would actually get those. And just to freak people out, bed bugs are so disgusting. Have you ever seen them underneath a microscope? It's so gross. It's so, so, so, so gross. I always watch a lot of documentaries I found one that you need, andy.

Ali: 11:15

They have an, an asthma one. That's cool.

Andi: 11:17

Yeah.

Ali: 11:18

It's so cute. I mean, they're all cute. There's boogers, Botox.

Andi: 11:22

I want them. Where would you put it, though? Because your face is so, but it's already so perfect, like your forehead is giving zero lines. That's life. My forehead does it too. That's life, you know, but it's got this glow. So my forehead does it too. That's life, you know, but it's got this glow. So I have no makeup on right now and I'm breaking such a bohemian glow. It's just like look at me, and then, when the sun kisses it, I'm going to be even more goldenly tan. I'm a baddie, for real is giving. I'm a baddie.

Ali: 11:49

Thank you. I am pale right now and look sick and deathly, but thank you.

Andi: 11:56

You're welcome. Love the sun to hit my face? Yeah, it's given. I'm a baddie on every day that ends, and why period.

Ali: 12:01

Yeah, I think you need to be a belly dancer. I wanted to totally see that I practiced growing up in saudi. It was the goal of mine, oh my god. So I took a belly dancing class with my friend.

Andi: 12:12

It's hard so is it the hip movement or you actually move? Is it all hips?

Ali: 12:17

and it's like chest. They go like this yeah, hips, chest, booty, the whole. I mean the whole thing. It's such a good workout and it's so much fun and it makes you feel sexy. It does and you know what I love that the belly dancers don't have a six-pack like the more like you know there is in the belly, the sexier the belly dancer is in my opinion. I like that, mr rogers. The belly answer is in my opinion. I like that, mr Rogers, sweater. Why, thank you? To me it feels like a British man smoking a cigar in Ireland.

Andi: 12:43

Yes, I like it, it's like a hug. Yes, and I also have my heating pad that you microwaved. I love it.

Ali: 12:50

I have my heating pad on right now.

Andi: 12:53

I'm also sitting on one. Yeah, because that's just what it looks like my job. You mind your business, guys mind your business, all of what we need.

Ali: 13:01

Well, this has been fun. This has been fun. I do like this. Is anybody flaring? Yeah, who picked me?

Andi: 13:06

yeah, this is the way that my knees have been cold. My knees and ankle joints have been freezing cold for the last four days. The rest of my body is hot Like. I had the world's worst hot flash while I was sleeping. The rest, when I was getting my massage, she was like what? Why are your joints so cold? And usually they feel hot, but no, it's like cold to the bone, achy, and it's just my knees and ankles and hands. The rest of my. My hips normally bother me. Huh, what are?

Ali: 13:37

the temperatures for both of you over there. It's 51 degrees. I'm jealous. It's hello 37. I think it was 24 when I got up. It's been degrees here for the longest time. My low is 26. It's been in the tens. My low is 24. I'm going to have a high of 50 at some point.

Andi: 13:57

Oh, my high on Friday 65. Okay, 65. My low all week is 37 degrees. 39 is the low, mine's 13. Oh, that's trash. That's trash, you keep it.

Ali: 14:34

Do you use the Guava app, the what, the who? The Guava app? What is Guava? Like the juice, like the fruit? Oh my gosh, you guys. Okay, google them on Instagram. I use their app.

Andi: 14:43

Did you tell me to Google it on Instagram?

Ali: 14:45

I don't know why I said that. I don't even know what that means. Okay, I don't know what I was talking about. Look them up on instagram, but we are actually recording an episode with them in like a couple weeks a couple of the girls I'm telling you. What I love about this is you can watch your correlations and you can. Okay, so it pairs with all of your medical stuff. Okay, so you compare it with your apps that you use for all your doctor's appointments and stuff. Yeah, all that stuff. Sorry, my mind is not working today. It looks at your labs, it looks at your appointments, but it also looks at the temperature where you are, your steps If you have a smartwatch or smart ring, it pays attention to all that too. So, like, it pays attention to everything and it can show you like correlations of why you might not be feeling well and so like pressure changes.

Ali: 15:36

you know that are that your body's not liking. Yeah, I might have butchered that why I follow them. I didn't even know about this.

Andi: 15:44

I'm following them too. I didn't know about this, so.

Ali: 15:47

I want to know if I butchered it, because maybe they don't track my steps. No, I'm pulling it up off the app store. Oh, it does track my steps.

Ali: 15:54

I don't remember it tracks my sleep, my steps, you can put in your mood, your symptoms, if you're drinking water, your activity, and it reminds me to take my meds and everything. But yeah, I'll get notifications letting me know that, like, hey, maybe you're not doing good because it's been super dry or super moist, or maybe this is going on or here. Let me click on the insights right now and see what it says. I'm excited to interview them. So I wear the. You know, you guys know whoop this thing. I'm only using it for a year because it's kind of pricey um, I think it was like 200 for the year, but this was only 40. But it tracks everything, like my sleep, my HPV.

Andi: 16:36

Is it HPV?

Ali: 16:36

Isn't that like Yep, it is HRV. Excuse me my heart rate variation. I do actually get cold sores on my lips. I had it since I was two years old, but not HPV HRV, but anyway. So it tracks everything, so it knows when I'm not doing well, like I get a score. You've probably seen it Like it's like you get like a score, yeah, yeah. And so like my sleep last night was 100 percent, but my recovery today looks like I'm doing great, even though I don't feel great, I don't know. But it is kind of interesting. But it tracks like everything, but not your doctor's office visits and labs. That's actually really cool.

Ali: 17:11

I have the Aura Ring and the Aura Ring tracks, all that stuff for me too.

Andi: 17:15

Yeah, the Aura Ring is great.

Ali: 17:16

Updating mine right now and it gives me like a sleep score and all of that. But I get notifications through this app telling me hey, you know, we've been paying attention to your blood pressure, your sleep and all these other things. You need a rest day. So last week it actually alerted me and told me that I needed to take a break and so you can choose to turn off your activity alerts for a day or two, because it's telling you you probably should. Okay, so like I have a sleep score of 66. If I click on it, it says time in bed 10 hours and eight minutes, but I slept for seven and 23. Damn. So it's not happy with me, but it could be worse, yeah.

Andi: 17:53

Random. Okay, this is about to be a business gripe. Okay, completely random. So you know how I say stuff like don't be so hung up on a word and miss the message. My biggest pet peeve Now don't understand that when people post things, after they post it, they may have noticed that there was a spelling error.

Andi: 18:12

We don't care. The message was the message. I don't care that there was a spelling error in it. Did you get the point of the message? So if they're having, by chance, be missing an E or an R, or somebody didn't use punctuation, I'm going to ask why are you hyper focusing on the grammatics and not on the message? So someone they sure did, they sure did, sure did.

Andi: 18:38

And in my mind I'm saying to myself you don't have anything else better to do with your time because the message was revisit. However, you need to heal, however many times you need to heal, instead of pointing the finger at the person that hurt you, look inward and figure out why it hurt you. It's no longer about who hurt you, it's about the why it hurt you, so it doesn't continue to happen. You hung up on a misspelling, can we not? So you missed the whole message. That's why you still over there, bitter and hurt. Stop on it.

Andi: 19:10

They did, of course, but it should give people is a sense of relief that is an actual human being that is putting the stuff out there, that they are being vulnerable enough with their healing journey and their space and whatever it is that they're experiencing to put it out there. You didn't have anything else to do in your time, energy, space, but to be the internet English teacher. I feel like you could be very well utilized in a school system somewhere, at a volunteer camp somewhere, if that is what you want to do, because the thing is, I get it. I get it. I'm also human. I get it was probably spelled wrong. I get that I miss things. I also get that I am degree times five, okay, so don't sleep on that either.

Andi: 19:55

And so then I'm going to ask you where you graduate from. So, while you're correcting my spelling, where'd you graduate from Right, and how many times did you do that?

Ali: 20:03

And there's seriously. Here's my two thoughts. My mom once in a while will tell me that this kind of stuff, but it's a protective thing. Hey, Jenny, I saw a spelling error. I'm letting you know, but it's not to criticize me. I appreciate when she does it. Sometimes it's something fixable. If it's a story, it's a story. I can't fix it. That's my point.

Andi: 20:20

It was in a story. It goes away in 24 hours. So why does this matter post? I would go and correct the spelling. It is a story, it goes away in 24 hours. Get the message in the now before it disappears. That was my. Go back and look at it again and get the message in the now before it disappears. You got about 17 hours before it disappears.

Ali: 20:41

You sometimes can't change it, Like if it's on a reel I made. I can't go back and change it. So it's like I know it's there, we don't need to go there, I get it.

Andi: 20:49

It's there. Did you get the message? Did you see what I was doing? Because that is what it's about Today? You decided to read a caption. Any other time we scrolling and liking. Today you decided to read, and I love that for you. Did you get the message, though, and not just the punctuation?

Ali: 21:04

Because sometimes we fat finger it. I appreciate my mom being protective, but when it's someone else I'm like really. My other thing I was going to say is there's a job for that. I can't think of the title, but my mom-.

Andi: 21:13

They're called proofreaders.

Ali: 21:14

Proofreaders that's what it is. My mom did a program for it.

Andi: 21:17

Yeah, they're called proofreaders. It's a whole job, and if that is what you want to do for the internet, then get paid for it. Or how about this? Slide a message to the person and go hey, I noticed this. I don't know if you noticed this, but I noticed. It's not a personal message. Do that. But don't be keyword warrior and hide behind the whatever. I'm going to drop it here. Cool, because if I circle the block to look at this comment in your profile, it's full of spelling and grammatic errors. It just makes me giggle. Do I go and comment? No, it just makes me giggle. That go and comment? No, it just makes me giggle. That came from a hurt place, and when you decide to heal I'll be right here to hold your hand, but until then, you better figure that out well, and doesn't it ever feel like sometimes people want to make us look stupid?

Ali: 22:04

yes there are people out there. It makes them feel better about themselves to make someone else stupid. It's a thing I had a family member like that makes them feel better to make you feel stupid. Now I feel bad because we told Allie like 10, 15 minutes tops.

Andi: 22:17

We did, but I just love seeing her face.

Ali: 22:19

So I have to apologize? I mean, I don't have to. I want to apologize, that's okay. That's okay. But I also love chatting with you guys. It brings me joy and it makes me laugh, and I needed a little bit of that this morning. It brings us joy.

Andi: 22:31

Therefore, we will live longer yes, yes, and then when lynn feels better, we're gonna do this uh, baby feet chip challenge thing, because I'm sure it smells like baby feet. I saw them in the grocery store. I saw them in the grocery store, forgot to pick them up. We will hit these, these weird chips. I'll get the bag. I'll open the back.

Ali: 22:50

Let's do it next week. Can we set a goal next week? I'll get a bag.

Andi: 22:55

It could be our Friday recording.

Ali: 22:57

Mm-hmm. Yes, Okay, so next week I'm going to get to the joy of seeing the expressions on your face as you all try my favorite chips.

Andi: 23:05

I'm so excited. I'm so excited about it.

Ali: 23:06

I don't know if you'll get the joy because we're going to have our hands in there making all russell noises, know that you're putting it in a bowl. Use the chopsticks, we'll get fancy with it. Back and listen to that episode. Kept playing that part over and over and I'm like, oh my god, I sound like a crazy person it was such a good episode though I love you guys oh, I love you guys too.

Ali: 23:25

We'll talk tomorrow. I'm excited, yes, and if, if you guys think of a food that you want us to try, please tell me, because I want to add to our list. Yeah, I'll take it Something. Just don't let it be slimy and nasty. I don't want to be like swallowing escargot or something.

Andi: 23:40

I'm not I love sushi.

Ali: 23:42

I love salmon. We can make sushi.

Andi: 23:44

together that could be a whole episode. I think we have the roll thing.

Ali: 23:47

I'll pre send you the grocery list. We can make it. Jenny's like I don't know about this. She's like I didn't want to be put to work. You know what, though? Have you guys ever tried a Buddha bowl?

Andi: 23:56

Yes, I'm a fan of a Buddha bowl. It is my favorite. I'm a nutritionist and I'm vegan. It's literally my life. I should know better you of. I eat it in a bowl and it's got some hummus on it.

Ali: 24:10

Foodables are my favorite. I'm making those this week Sweet potatoes, onions, tomatoes all the good things, Nummies.

Andi: 24:17

All right, I'm about to go take this fat juicy nap.

Ali: 24:20

All right, ladies, all right Until next time Until next time. Don't forget them, baby. Nope, keep them.