Laughing Through the Layers of Chronic Illness with Jewel

When your world is turned upside down by chronic illness, finding humor and connection can be your lifeline. That's exactly what happened when Jewel, the effervescent @thelipedemacushie, joined me for a chat that'll make you laugh, and nod along with understanding. We dove into Jewel's experiences with Cushing's disease, her surgeries, and the daily dance with adrenal insufficiency. There's something incredibly powerful about sharing stories of resilience, and Jewel's candidness about her spine surgery and its aftermath reminds us all that strength often comes with a side of vulnerability.

Our conversation took a lighter turn as we mused over the quirky collections that pepper our lives—from my array of cups to my husband's stash of comic book memorabilia. We all have our treasures, don't we? The secret sweatshirt hoards, the spoons from travels, or that second fridge in the garage that silently marks our passage into adulthood—these collections tell the stories of our lives. And as we laughed about the closet wars waged with our loved ones, it was clear that these shared spaces hold more than just stuff; they hold the essence of our relationships, too.

Rounding off our tête-à-tête, Jewel and I touched on the peculiar world of mail delays and the sweet anticipation of giveaways that mean so much, particularly to those of us with chronic illnesses. We delved into the role of physical therapy, the non-negotiables of emergency medication, and the oddities of coordinating meals across time zones. It's not every day you get to plan lunch and breakfast simultaneously! Whether you're tuning in for a dose of empathy, a spot of crafting, or just to feel understood, this episode is a warm invite to join our community where chronic illness is part of the conversation, but not the whole story.

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Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:43 Chronic Health Struggles and Friendship
• 18:18 Collecting Chronicles and Shared Spaces
• 26:29 Mail Delays, Giveaways, and Physical Therapy
• 39:40 Mealtime Scheduling and Live Streaming

Transcript

Jen: 0:43

Hi my Spoonie sisters. It's your Gracefully Jen , and I am here with the one, the only, hi Jewel, how are you?

Jewel: 0:53

Hi, I'm doing well. How are you?

Jen: 0:56

I'm good, I'm good. I'm so glad that I could start our day off by making you laugh this morning.

Jewel: 1:07

Yes.

Jen: 1:09

So for our listeners, I mean, you're a few hours ahead of me, but for me it was like 7.30 in the morning and I went into our little group chat on Instagram and I decided to sing a little trill to you guys. Is that what it's called A trill?

Jewel: 1:30

I loved it. I actually laughed out loud. I was like that was cute.

Jen: 1:37

I've been on this kick where I feel like I have to do that to make all of us laugh and make our days better it does A smile.

Jewel: 1:46

When you put a smile on your face, it just makes everything better.

Jen: 1:50

And you know, I think we both need this today. We both seem to have quite the morning going on. We're quite the pair. So let's refresh the memories of people that have heard your story before on here and also kind of give a little quick rundown for anyone that's new and has not heard your story before.

Jewel: 2:14

Okay, my name is Jewel on Instagram. I am on Instagram and TikTok. I'm the Lipa D McCushy, although I don't get on TikTok much. I'm old and I don't know how to work it.

Jen: 2:29

Likewise my friend, Likewise You're. So cute.

Jewel: 2:32

I just can't figure it out. It's too much. I'm having a hard time with Instagram. I don't need to add anything else, but one day I'll figure it out.

Jewel: 2:43

So I have what's called Cushing's disease, which is a rare disease. Hypercortisolism is what it is. I had a tumor on my pituitary gland that caused my body to produce too much cortisol, and cortisol is a hormone that we need, and too much of it is bad and too little of it is even worse. So I had pituitary surgery in October of 2021 to remove the tumor and since then, I have adrenal insufficiency, which means my body doesn't make cortisol anymore. So I take steroids on a daily basis. I take prednisone as well as hydrocortisone, and, um, yeah, we all know what those medicines kind of do to your body any of us that have autoimmune disease. So, um, I am currently just trying to make it through on my steroids.

Jewel: 3:47

I did recently have spine surgery in December of 2023, last year, last December, they removed a fat patch from my spine. My pain has been improved like 90 percent, and it's crazy because for so long they're like oh, that's not the cause of your pain, you need to lose weight. And I just kept like okay, I'll find another doctor who'll help me, and eventually the doctor was well, we'll give you some shots the epidural shots, and see if it works. So I got those shots. They did put me to sleep, thank God. Got those shots in my back and immediately noticed a difference, so they allowed me to do the surgery.

Jewel: 4:39

And completely different Like I feel like a completely different person. I do have some nerve damage on the left side of my lower half, um, but hopefully it goes away. They're not sure if it's gonna go away, they're not sure the time frame it'll go away, um, but it's causing, like me, to have a limp and then my left two toes don't move anymore. So hopefully that goes away. But if I had to choose, you know one thing or another, that pain was just way too much. So I guess I got to take the punches as they come, you know.

Jen: 5:25

So I guess I got to take the punches as they come, you know Well, and you and I have not had a chance to really chat about your surgery because I had a lot of life stuff going on at that same time. So, now, since I get to see you and talk to you. How did that work? How did they finally come to terms with? Was it because of the epidural shots? They finally said okay, you do need this surgery.

Jewel: 5:50

Yes, so I guess those were like a diagnosis tool, because so originally what they were saying was the lipomatosis is caused by just me gaining weight. Lipomatosis is caused by just me gaining weight. And I'm telling them, like I have Cushing's disease, it causes lipomas. I don't think this is, you know, caused by my weight. And so it took for my orthopedic doctor to recommend me to a spine surgeon. He's like even thin people get this, so it's not because you're overweight. So they use the epidural injections as a diagnosis tool to see if that was actually the problem. And when it helped, they figured okay, the surgery will help. And it did. The surgery will help and it did. So where exactly was it? Was it like lower back, middle upper, my lumbar spine? So l4, l5 or no, l5, s1 is where it was. So they removed that middle part of my spine and then took the fat out. Okay, so it's pretty cool because on my x-ray you can see where that middle part is gone.

Jen: 7:15

Wow, okay, so then how was recovery?

Jewel: 7:22

Very hard, very, very hard. For about three weeks I could barely walk. The pain was agonizing. I was on so many pain meds and I have a video that I wanted to post but I couldn't bring myself to actually do it of me going to try to make it to the bathroom. And I couldn't bring myself to actually post me in a because I had to wear diapers after the surgery because I didn't know if I was going to make it to the bathroom or not, honestly. So there were times that I didn't make it, that I was glad I had the diapers on, but, yeah, so I recorded me trying to get up and go to the bathroom and I couldn't bring myself to post it. But that recovery was very hard, um, but it it only lasted about three weeks. So I would do it all over again if it means I didn't have to be in that pain every day.

Jen: 8:36

Absolutely, and you know you and I had a few late night chats. You know you and I tend to be up at who knows all hours of the day and night when we're struggling, and so I love the fact that we can chat. But I think I was so stressed out at the time that I couldn't even think clearly and I felt so bad and I feel like I kept apologizing to you, but I personally didn't feel like I was there for you the way I normally would be there for you, but our life was kind of upside down at the time too.

Jewel: 9:10

So yeah, you don't ever have to apologize for having to go through life. We all have to go through it, you know, and I have my moments where I retract and I have to be like, ok, sorry, I was going through some things, but I'm here now, what's up. Like, okay, sorry, I was going through some things, but I'm here now, what's up. Yeah, so, and we all understand, you know, we, we get that. We all go through these moments where it gets harder than others and even if it's just the way we're taking it, like the mental toll of it, um, I understand and I thank you for even, you know, the time that you did reach out and you're important to me.

Jen: 9:51

You're important to me too, and that's part of why I felt like I had to. You know, I think I finally let you know what was going on in our lives at some point. But in the beginnings things just felt. You know, we had a death in the family and things were so upside down at the time that I just kind of froze and turned off to everyone for a while. And then I woke up one day. I'm like I feel bad. I preached to everybody about being there for each other and supporting each other. And here I am, I like disappeared.

Jewel: 10:22

But you never know.

Jen: 10:24

You never know how we're going to deal with life right.

Jewel: 10:28

Exactly. But you never know. You never know how we're gonna deal with life, right, exactly. It's like those things, you know people. It's like well, if I was this, I would do this, and if I was this, I would do this, and you never know how you're gonna deal with something when it's actually on your plate and it's so much easier said than done it really is the shoulda, woulda, couldas, the, the assumptions of what we think we would do, and until we're in situations we have no freaking idea.

Jen: 10:55

But you know what? Spring is coming.

Jewel: 10:59

It is the weather's changing. Unfortunately, it's doing this kind of flip-floppy thing.

Jen: 11:09

Tell me about it.

Jewel: 11:12

How are you surviving that? Um, one pain pill at a time. It's like on cold days everything hurts. And then on warm days, it's like I'm anticipating when it's gonna to get cold. So you know these joints. They're like oh, it's not scientifically proven that the cold, you know, does anything. And I'm like it's definitely proven. I can show you proof.

Jen: 11:39

Yeah, yeah, you know our rheumatologists and our family doctors. They agree with us on this, because it's obvious. It's obvious in how our bodies react, and I'm looking outside right now and I see clouds and dark skies. And I don't know about you, but our weather has just been constantly changing. We might have a high 50s day and it's feeling pretty warm and the sun is out, and then the next day is pouring rain, it's windy, it's cold, it's miserable, and I, when it's like that, it's almost like we don't have time for our bodies to adapt, and that that's when our bodies just go okay, crazy. I can't handle this.

Jewel: 12:24

Right, I'm confused. I don't know what to do, so I'm just going to do everything.

Jen: 12:29

Yeah, yeah, and I think my my goal, other than doing this with you today, is a do nothing day. I think we all deserve a do nothing day. Our bodies need and crave that once in a while.

Jewel: 12:44

Yesterday was supposed to be my do nothing day and then I decided I wanted to go shopping. Yeah, I feel like that's a necessary you know, like do something, you know. So I went shopping and I decided to invest in my business and bought a printer. I have so many printers and my husband was like how many printers does one need? I'm like as many as it takes to get the job done.

Jen: 13:18

What kind of?

Jewel: 13:19

printer is it? I bought a Epson EcoTake 15000. It is a large format printer, but I am going to convert it to a sublimation printer. So I'm excited and scared all at the same time.

Jen: 14:44

You might as well have been speaking a foreign language to me. You know I'm fascinated with the sublimation and all the things, but I don't know if I have, well, the space, the time or the brain for it.

Jewel: 15:03

I don't have either of those the space, the time or the brain. But you know, we do some great things A spoonies.

Jen: 15:14

We, we adapt, we do, we do Okay, so let's tell listeners about your business.

Jewel: 15:23

Okay, my company is called Crafted it with TLC LLC, and I make awareness apparel and tumblers, cups, anything you name it, I probably make it. I closed my store down in December, right before Christmas, because I was going to have my surgery and I expected to have it open back up in January, but of course that recovery was longer than I thought it would be.

Jewel: 15:57

Life happens, right? I'm not sure why I thought having spine surgery, I would be like, oh okay, I'm fine, right? I don't know why I thought that you were up and dancing like a week later, right, I don't know why I thought that, but I did.

Jen: 16:11

You were up and dancing like a week later.

Jewel: 16:15

No, surprisingly, I was very surprised at that. So it took a lot longer for me to heal from that than I thought it would, and I'm still not completely healed. I just started physical therapy. But I feel like crafting is that joy that I get for day to day. You know that one thing that is like what's this, one thing that makes you happy, and that's crafting for me and making things and doing things. So I am very excited to open my store back up. I have some new merchandise coming out for endometriosis and what else do. I have A few other things. I have some new keychains coming out, some new tumblers coming out. So I'm excited and I'm going to open back up on the 18th.

Jen: 17:16

That's exciting.

Jewel: 17:17

Yeah, so I get to make all this beautiful stuff and let other people enjoy it.

Jen: 17:28

That's awesome. I'm so excited and you know I've got to tell listeners your tumblers are so gorgeous, so gorgeous. Okay, so, jewel, we like to send each other things all the time, because you know that's what we do, and you sent me the cutest stinking tumbler for halloween. And then, when halloween came and went, I was like, um, I guess I have to put it away. Okay, I pulled it out last week just to look at it. It was so pretty.

Jewel: 18:06

So that means.

Jen: 18:07

I have to get you another tumbler that you can use when it's not. Halloween, yeah, my all year long one. Yes, oh my gosh, I have a collection. You gotta get you a year round tumbler. I have a collection of all sorts of cups and I think my husband thinks I have an issue. I don't see it, I don't. But you know, we all have our thing, right.

Jewel: 18:31

We do. I have a lot of stuff, just stuff. I don't know. I don't think it's a problem. My husband does, though, and I think it's just because they don't understand.

Jen: 18:46

You know, men tend to not be collectors or knickknackers Is that even a word? Knickknackers? They don't collect things, they just don't.

Jewel: 18:58

Do you know? My husband is actually a collector.

Jen: 19:01

Okay, so he does. What does he collect?

Jewel: 19:03

He does collect, he collects. He's a nerd, so let me preface that he collects comic books. He collects, like the baseball basketball cards from back in the day and he collects coins.

Jen: 19:21

Okay, so I need to retract my sentence. Maybe it's just my husband that does not collect things.

Jewel: 19:27

He used to collect shoes, but that kind of got a little pricey.

Jen: 19:32

Well, and that one's a little hard. It can take up a lot of space.

Jewel: 19:37

Yeah, you should see my closet.

Jen: 19:38

Likewise, likewise. We used to not share my closet. Likewise, likewise. We used to not share a closet, and now we do. I don't like it. I don't like it either. It's a walk-in closet and I gave him the corner and I kind of want it back.

Jewel: 20:04

Like you got to get out, I'm putting you out. He's going to come in. There's going to be a pink slip on the closet.

Jen: 20:12

Yeah, yeah, you want to know my secret. What's your secret? Okay, the room that I'm in not that listeners can see, but you see I'm in a room. It has a closet, a full-size closet. It has my sweatshirts, my extra sweatshirts and my crafting stuff. It has crafting supplies and paint supplies, but the hanging part sweatshirts. Yeah, how, how, how.

Jewel: 20:55

I think sweatshirts are like the staple of chronic illness. Like they're cozy, they're soft. Who wouldn't want to wear a sweatshirt?

Jen: 21:07

Oh yeah, and, and you know, I like to collect them wherever we go. You know, I have different ones from different beaches and, um, I have crime junkie ones, I have my spoony ones. Uh, I have my Spoonie ones. I mean, the list goes on and I was going through them the other day thinking, okay, it's time I need to downsize. Okay, so these ones over here, they're too small right now. Maybe I should donate them.

Jewel: 21:38

Oh no, oh, no, no no.

Jen: 21:40

Oh, no, no, no. This is one of my favorite crime junkie ones. I'm going to wear that. I'm going to be able to wear this soon. I'm going to be able to fit it, yeah, yeah, yeah, yeah. Or, or this was you know, one where I supported a foundation and it's beautiful and it's a good color, and and I can't part with this one either. And, and this one's from Costco and I love this brand. It's so cozy, oh my gosh. Okay, I don't know how this episode took that direction. My goodness, we all have our dirty little secrets, yeah, we.

Jewel: 22:28

So to battle the clothing thing, I started collecting spoons and magnets from places that I go. So I will like, if you go to like the like touristy gas station, they usually have spoons like with the state on them, and I was like I could collect spoons, so I was excited about that. And then we do magnets so that way I don't have a bunch of T-shirts that I can't fit because my weight decides to fluctuate whenever it wants to.

Jen: 23:02

So we do the magnets too, and we love them, although.

Jewel: 23:08

Oh, and Christmas ornaments.

Jen: 23:09

Oh, yes, oh, and stickers. Yes, I don't know about you, but we have a refrigerator for our garage, just for beverages. And I kid you not, when we, this house to almost two years ago, uh, we bought a brand spanking new fridge to put out in the garage and the very day we bought it, we started putting stickers on it. When do we become these people?

Jewel: 23:41

it's so funny when we, when we bought our first refrigerator, my sister-in-law's like you're grown, you own appliances. Oh yeah, oh yeah. When did I become her?

Jen: 23:55

yeah. I do have to say, though, it was not an expensive refrigerator, so if there's anyone out there judging me, it was one of those Home Depot really, really cheap ones, you know, like the cheapest one they have.

Jewel: 24:06

Don't judge us. Don't judge us.

Jen: 24:09

But we needed one for the garage. You know, when you have company, it's nice to have a place that is just beverages and you can be like okay, whatever you need soda juice, energy drinks, water, it's all out there.

Jewel: 24:22

Go help yourself yeah, I have one too. I think that's a thing now.

Jen: 24:28

I think it's the refrigerator in the garage is a thing now it is a thing it's like everybody I know has you know, I even have to keep fruit out there because my husband is like a meat and potato kind of guy, and so if I want to have like a bunch of fruit, he doesn't leave me anywhere to put it in the inside fridge, it goes all out in the garage. Thanks, honey. Thanks a lot, thanks, thanks at least.

Jewel: 24:56

But you know what? In the wintertime that refrigerator gets really, really cold. Oh, oh yes.

Jen: 25:02

Yes, I'm here for it.

Jewel: 25:04

The best water comes out of a bottle from the garage in the wintertime.

Jen: 25:11

There's no way of explaining it. I mean, honestly, I even have a case of water that's just out in the garage and to me that's even like liquid gold.

Jewel: 25:28

Exactly, it's the best like cold icy from the springs of minnetonka water right here for me, yeah and you know these bottles of water that we speak of.

Jen: 25:37

They could be coming from down the road. For some reason.

Jewel: 25:40

They taste like gold out of the garage in the winter. Oh wow, how did we get here?

Jen: 25:50

so we are quite the pair. We have talked about a lot of crazy stuff today, but you know what this is the life of a spoonie what I do want to talk about are your bracelets. They're beautiful thank you, they're so much fun so beautiful.

Jewel: 26:13

Even my husband was like, wow, that's nice. I'm like he doesn't like anything okay so did your new package arrive?

Jen: 26:22

It has not arrived yet Okay.

Jewel: 26:24

The last time it took like a whole week after it was supposed to arrive. The mail has been doing something really weird lately.

Jen: 26:34

So I think your order and Andy Byer's shipped about the same time and hers was supposed to arrive on Monday and she got it on Sunday, okay, so I was so hopeful that you would have yours.

Jewel: 26:51

No, my male has been doing something weird. My aunt called and was like did you get your letter? I'm like, no, we haven't gotten it, It'll eventually come.

Jen: 27:00

Maybe they're training some new people. Maybe they're having a hard time, going a little slow.

Jewel: 27:09

It's fine, it'll get here.

Jen: 27:14

It's a little slow, it's fine, it'll get here. We're just a little slow, we're gonna send them some good vibes. And just come on, hurry people, get that mail over to jewel.

Jewel: 27:20

Come on, do it yes, but the bracelets are lovely. Even my daughter wanted one, so that's why I ordered two. So I am going to do a giveaway, um, for my business, and I am going to use the one that I bought in the giveaway, yay.

Jen: 27:41

So I'll be giving away a Jenny exclusive bracelet awesome possum, are you going to give away a Tumblr or something fun like that?

Jewel: 27:53

too. Yes, I'll probably do a Tumblr and a tote bag and I'll probably cater it to. You know, whoever wins? Most of the people are some type of Sony or you know some type of chronic illness, a sunni or you know some type of chronic illness. So, whatever the you know, whatever illness or disease they have, I'll probably gear it towards the person I like that.

Jen: 28:19

That's really thoughtful yeah you know, because a lot of times it's just like a random gift giveaway, you know, and and sometimes people sign up for a giveaway and they win something that really doesn't apply to them which is okay too, because sometimes they are friends with somebody that applies to and that's why they joined. The giveaway is to make sure that this particular book or item, or whatever it is, goes to somebody that really needs it, and that's awesome too, yeah.

Jewel: 28:46

Yeah, so I love, I love when they have my personalized giveaways. That's awesome.

Jen: 28:52

I'm excited.

Jewel: 28:53

I'm excited as well, so I have to figure out. I'll probably announce it after I open next week sometime. But yes, your bracelet, that first bracelet I ordered, will most definitely be in there. That's probably the giveaway, because it is so beautiful, and if I can't wear, it.

Jen: 29:13

somebody needs to wear it. You're so sweet. Thank you so much, and I actually have some new stickers coming out and I think they're coming today.

Jewel: 29:24

I'm thrilled Isn't it fun?

Jen: 29:25

when we get packages. Yeah, yeah, especially because I don't know about you, but I just get so excited to share new things with people. Yeah, yeah, especially because, like I don't know about you, but I just get so excited to share new things with people. Yeah, yeah, so.

Jewel: 29:49

I'm clearancing out a lot of my old designs in my Etsy shop and trying to make some fun, springy, cheerful looking options, and so, yeah, options, and so yeah, oh. Another thing I'm gonna do when I open up the first uh, 10 orders are gonna get a free keychain. I'll also make that keychain geared towards whatever they purchase.

Jen: 30:05

So I love that I love that oh that's.

Jewel: 30:12

Well, I have so many packages coming from Amazon over the next few days.

Jen: 30:15

I might have to look at my schedule and see if I can put your episode out at a different time. Let's see here. You might not see me for a moment, but we can keep on chatting, so your shop opens on.

Jewel: 30:33

March the 18th.

Jen: 30:35

Okay, march the 18th, after the episode air oh, okay, we could do it at the same time. Okay, I'll let you know the exact day. How's that? Okay, we're gonna coordinate, coordinate and maybe I'll kick in a new sticker or something. I don't think I ordered magnets, I think I only ordered stickers. I don't know, somebody will get something, we'll get something. Okay, so, besides your shop opening so you've got your shop opening back up You're going to do a giveaway. You're doing physical therapy. Yeah, talk to us about physical therapy. What exactly do they have you doing?

Jewel: 31:35

So right now everything I'm doing is laying down on a table and mostly stretches that for the hamstrings and the core. I'm trying to get strengthened at my back a little bit and it's just simple as things like I lay on my back and put my leg up 15 times and, but yesterday when I did, I did it yesterday and of course I went shopping because why not? I would like go shopping, have pants out if I could. But I came home and I was exhausted, like it does exhaust me, um. So I do have to tell her, like I know I look normal but I'm not and I get tired really, really fast. Um, my cortisol goes down with the simplest of things. So I have to be really careful about how I'm feeling when I do physical therapy, and so my husband usually is the one that's like Joel, no, you sound tired, come home or you need to go lay down, do you have emergency medications or treatments that you need to go lay down?

Jen: 32:51

Do you have, like, emergency medications or treatments that you need to take with you when you're on the go?

Jewel: 32:57

I do so. I have this little baggie that I keep with me at all times, even when I'm at home. If I'm on the couch, this bag is on the couch. If I'm upstairs in my room, this bag is upstairs in my room, and it just says adrenal insufficiency life-saving drugs inside and inside I have my extra. I have my daily medications and then I carry extra medication, so extra steroids, just in case I do get low. I also carry with me, every time I leave the house, an injection of solucortef. If I get into a car accident or if anything major happens while I'm out, I'll have to use that and go to the hospital. So yeah, I carry medication with me everywhere and I also carry an injection just in case.

Jen: 34:00

Okay, I mean that's probably super important. Can you kind of tell as you go through your day that you're going to need something?

Jewel: 34:11

Yes.

Jewel: 34:13

I mean that's a good thing. Yeah, well, that's a good thing. You can tell Exactly. Usually the people around me can tell before I can and like my speech will slow down, I will get tired, speech will slow down, my, I will get tired. Um, I smile a lot, so people know. And then I'm always pushing, pushing, pushing. So if I say I'm tired, people know, oh, she's really tired, she probably should go lay down.

Jewel: 34:44

Um, if I say my head hurts, it's usually because either my cortisol is low or my allergies are bothering me. Yeah, so people around me usually notice before I do. Because I don't, they'll be like oh, you sound tired and I'm like I am a little tired, but how did you know? They're like well, your speech slowed down. Or I start slurring words and once I get to that point, I know I need to take extra medication or I need to take a shot because I'm going downhill fast. There are certain things that do trigger that. Emotional conversations are the worst for me. Like, my cortisol drops fast with my emotion. Um, if I'm working too late or working too long, um, it'll, it'll drop my cortisol and I'll get tired really fast. If I'm doing too much physical activity, um, if I go out for anything, I'm guaranteed to be tired when I get back home.

Jen: 35:56

So Well, and I think it's really important that you are in tune with your body and you know. But it's also great that others are in tune with you as well. You know a lot of times the people around us. They're used to what our behavior is like. Yeah, and if, if our eyes look a little different, you know, cause sometimes that's all it takes. So you look at your eyes and you're like, wow, okay, you're a little off, you're a little off, and it's and it's so important that they're sharing that with you, because that is helping you take the medications or the shots, injections, whatever it is you need at that moment. That's critical. Yeah, it sounds like you have some great people around you, though.

Jewel: 36:39

I do so. My husband is with me just about 24 seven and he knows every eye twitch, every muscle movement, every everything that could possibly go wrong. He is looking for every day, all day, and even my children they're, they're very sensitive to are you okay, do you need anything? So my support system is awesome. So my support system is awesome and they're able to notice when something is wrong, usually before I do. Even my internet friends that I talk to on the phone daily they're like you sound tired, you need to go sleep. Does my voice change that much? But I think it does.

Jen: 37:31

I absolutely think it does for for everyone. Yeah, and I think it's important to have those kind of people in our lives that are paying attention, yeah, so big shout out to all of your friends and family kudos, good job. Keep being a great person, keep loving jewel, keep letting her know we could chat forever. I know we could, but we should probably let people go. Is there anything that we haven't shared that you think we need to share?

Jewel: 38:17

think we need to share? Um, not really. I'm just every time I say big on community. Um, just get your people and love them and and talk to them, because it does help when you're going through stuff. So absolutely, we all, we are all here for each other and I love it.

Jen: 38:31

Thank you for coming back and chatting again.

Jewel: 38:34

No problem, this episode was very like unhinged, but that's okay.

Jen: 38:43

You know I love it. The people that love us are here for it and they're ready to hear every twisted direction that we go. Rabbit trails, lots of rabbit trails. Well, I love you to pieces. We're going to have to have you back. We got to make this a regular thing. Oh, by the way, listeners, we decided we're going to start doing this thing. It's not probably going to be every week, but we are going to do craft time. Lives on instagram. Yay, I'm so excited. I think we landed on. What day? What day of the week did we land on? Did we say monday, monday?

Jen: 39:24

mondays okay, mondays, I don't know if we nailed down a time.

Jewel: 39:30

No, maybe we could do lunchtime.

Jen: 39:35

Yeah, lunchtime may be different for you than me.

Jewel: 39:38

Oh yeah.

Jen: 39:40

Let's see here what time do you eat lunch?

Jewel: 39:49

Oh Well, my lunch is 12. But that would be what? Nine for you? That's early.

Jen: 39:59

That's breakfast for me, so we could do breakfast.

Jewel: 40:06

We could do your lunch, and that would actually work, because I get off work at three. Well, no, I don't work on Mondays. I'm actually supposed to be working now, huh.

Jen: 40:19

We're going to figure it out and we'll let you all know. We'll figure it out together, yes, and if not, you're going to see us go live at some point, right? Yes, and if not, you're going to see us go live at some point, right? Yeah, and we'll craft and we'll chat and talk about all things Spoonie and life, and people can ask questions.

Jewel: 40:40

Yeah.

Jen: 40:40

All right, Well, listeners, I love you to pieces and sisters. Until next time, don't forget your spoon. Yeah, bye.