My Spoonie Sisters

Navigating Life with Grit and Grace

August 27, 2023 Host: Jenni Weaver Season 3 Episode 1
My Spoonie Sisters
Navigating Life with Grit and Grace
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What does it mean to be a warrior? Today, I'm joined by Makenzie, a 22-year-old nursing student who embodies this term like no other. Battling Juvenile Idiopathic Arthritis since age 13, Makenzie navigates the daily struggles of her own disease while also being a champion for her son Josiah, who has Familial Cold Autoinflammatory Syndrome, and her mother, who is fighting Lupus and Rheumatoid Arthritis. She offers a candid insight into the complexities of their journeys, from the agonizing search for a diagnosis to the treatments they undergo.

Have you ever felt unheard or misunderstood in a doctor's office? Makenzie knows this feeling all too well, and she's here to emphasize the importance of standing up for yourself and your loved ones. She shares her thoughts on advocating for early detection tests for autoimmune and autoinflammatory markers at birth - a simple measure that she believes could spare others from undue suffering. 

Lastly, let's delve into Makenzie's resilience kit, her 'Spoonie Toolkit,' and how she maintains a positive outlook despite the trials she faces. We touch on the reality of parenting children with special needs, the invaluable importance of support, and maintaining a good attitude, no matter what. Whether you're personally affected by chronic illness or not, this conversation with Makenzie is sure to inspire and motivate you to face life's battles with grit and grace.

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https://linktr.ee/makenziecabrera

The one app with all the wellness resources is designed to help those with autoimmune diseases thrive and lead a more meaningful and purposeful life. From weekly recipes, movement, and meditation to forums and a marketplace, Our Serendipity has been developed as one cohesive ecosystem to support those fighting invisible illnesses. Our Serendipity App

Kaleidoscope Rare Disease Stories,  a collection of first-person stories from people around the world living with a variety of rare diseases. *Net proceeds from sales of this book will be donated to the National Organization for Rare Disorders Amazon.com: Kaleidoscope: Rare Disease Stories (Kaleidoscope Stories) eBook : Wong, Kerry L.: Kindle Store

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Jen:

Hi, my Spoonie sisters. I am your host, gracefully, Jen, and I once again, as I always say, I have the pleasure of bringing to you another amazing Spoonie sister. Welcome, Mackenzie, how are you today?

Mackenzie:

Hi, how are you? I'm good.

Jen:

I'm doing okay. You were just telling me a second ago. You've had some flash flood warnings. What's going on over there?

Mackenzie:

It's a disaster right where we're at. It's like okay, but more downstate people are losing their houses, roads are disappearing, it's like landslides. It's so crazy. Luckily we're kind of in the clear, but it's still raining all day.

Jen:

And for listeners, you're over in New York State near Canadian border, and I think I saw someone else recently this morning. They were saying something about they were going to go to a concert over the weekend, but they used their better judgment to stay home, and they were so glad they did because there were roads washed out.

Mackenzie:

I couldn't even imagine being on the road right now. I don't know.

Jen:

Yeah, I'm not all about that. I would rather stay home and hide, right, all right. So enough about our banter. But we are here to highlight and talk about you and your family, so do you mind kind of just giving us a little bit of an introduction to about you and why I brought you here?

Mackenzie:

Sure, I'm Mackenzie, 22, I am a registered nursing student. I want to work in rheumatology and rare diseases when I'm done. I was diagnosed with JIA, juvenile idiopathic I when was arthritis, when I 13 after 13, having so many crazy symptoms, and you know, that whole gaslighting stuff, which is unfortunate for a little girl. My son, familial , familial cold disease cold syndrome. So it's like two of us in the house. And then four-year-old., He has thalassemia and a blood platelet coagulation defect disorder, which is his platelets don't work correctly, so he gets iron infusions monthly. And then I'm also married to my high school sweetheart. We've been together for like eight years.

Jen:

Does he have anything?

Mackenzie:

No, just like I'm like great, we're all sick besides you. Hey, that's great right, He doesn't get it.

Jen:

I'm sure he tries right. They try their best.

Mackenzie:

Yeah, that's very true. I mean it's hard because his parents and his family's from the Dominican Republic, so the whole medical stuff is very taboo. They don't like talking about it. So him going from that to a family full of doctors, nurses, healthcare professionals, he's like why are we talking about it like this? He's not used to it.

Jen:

Oh, wow. Well, he's in for a long road of getting used to it and hopefully catching on.

Mackenzie:

For sure.

Jen:

Okay, so I was diagnosed when I was 32, so 13, that is way different. So I guess what got you to the point where you needed to be seen to figure out what was going on with you. What were some symptoms that were going on in the beginning?

Mackenzie:

Yeah, so my mom. She actually has lupus and she has rheumatoid arthritis plus some other things, like she's really sick all the time with autoimmune stuff, but she also has thalassemia, like my son. So I was pretty much showing the same characteristics as what my mom was and she wanted to get a hold of it quick because she wasn't diagnosed till she was about 27 to 30ish that time frame which by then she was so sick. So it took them years of getting her back to what her normal is, which is not normal. So doctors pretty much told my mom hey, like your kid is just depressed, there's nothing wrong with her and blood work was abnormal. And they still wasn't listening. There was times where I couldn't even walk on my legs or go to school and my mom's like absolutely not, no way, there's something wrong with my kid. She has a long history of autoimmune stuff, whole bunch of family members with autoimmune stuff. So it took them a long time but we finally got the diagnosis after going to so many different places. It was a long journey.

Jen:

I can't even. I can't even wrap my head around that one. So okay, so you're finally diagnosed at 13. What did that look like? Did they begin treatments for you? And I guess they told me.

Mackenzie:

It was a lot, because back then, even before my time, all these auto inflammatory diseases aren't taught in school, even for me. I had to bring up to my professors why aren't we learning about these rare diseases, supposedly? And they didn't know what to do. When they diagnosed me with JIA, they're like well, have a healthy diet and exercise, no, i need to be on some type of medication. So they had me on like the Hamera injections for a while till insurance decided to not cover them anymore. So now, like we're managing with infusions, i get like iron infusions because I'm also anemic, which helps a lot with my symptoms, but also just Tylenol and Motrin, which sucks, and then I get pregnant zone, which makes me gain weight and I hate it.

Jen:

We've all been there. Oh my gosh, don't even get me started.

Mackenzie:

Ugh, it's so frustrating. I hate it. It's sad that a lot of people have to go through this and doctors don't have the knowledge, Like even for my son, Josiah. He's on a biological enter lucarin injection for alaris and they still don't know about his rare disease And it's like they're guessing and it's sad because he's too.

Jen:

Yeah, that sorry. my husband was trying to call. I'm trying to text him and tell him that I can't be bothered right now, okay, okay. so I mean I'm trying to figure out how we can talk about both you and your children going back and forth. So we're gonna take a pause because you're okay. So first child was born. Did you notice anything right away?

Mackenzie:

Well with Jace he was the typical normal baby, but he bruised a lot And you know, when kids are bruising, automatically they think they're getting. So I had to fight them and be like, hey, you know, i have a blood disorder, so does my mom and my grandma, why don't we check him? And they never did, even though he was anemic for two years of life. They were just like he's fine, he's gonna be okay, it's the formula. And I'm like, absolutely not. So then I got pregnant again and like I was like, okay, we're gonna feed him iron. He's getting iron drops, maybe he'll be better. Cause now I'm worried about another pregnancy which I had. Helps, i almost died with Josiah And then Jace was getting worse at this time. So having a sick newborn, sick two year old, and then I was sick, so I was like we gotta figure this out. So we all went to the hematologist at the same time And that's when they diagnosed Jace with all this blood stuff. I'm like, wow, if, maybe, if we caught this two years ago, he would be better, cause now he has bruises all over his body and he bleeds everywhere all the time. Like seriously, so it was just the last couple of years have been ridiculous.

Jen:

Yeah, like, how about you listen to me? I know what I'm talking about. There's something not right, yeah, for listeners. You and I have chatted a little bit about this. I'm going to mind blank on the movie we were talking about. What is it called? Do you remember I?

Mackenzie:

don't remember.

Jen:

This is like the worst time for me to have a mind blank, cause I want to tell people about it. I cried so hard through the whole movie because it breaks my heart to think of any parent and any mother going through what they went through. Can you say that again? I'm sorry, take care of Maya. That's what it was, yes, okay. So, people, i'm telling you take some tissues. If you're like me, horrible, go watch that movie because I'm serious. I feel like a lot of parents go through this and it's not talked about enough.

Mackenzie:

It's sad because people automatically think you're abusing your kid or you have munchausen by proxy. That's what they said about Josiah when I was bringing them into the ER every week with something and they're like are you doing this to your kid? because why are you here every week? I'm like no, there's something wrong with him. Hello, you're not listening to me. They just portrayed me to be like this crazy, psychopathic mom. I'm like why would I do this to my kid? I work, i go to school. I don't have time to be at a hospital every week. I'm not doing it for attention. Then one day they're like oh, you're not crazy, your son has a rare disease. I'm like great, after you accused me for two years.

Jen:

I'm like, yeah, can I have my apology now please, right, oh, my gosh. Ok, so back to you again. I know I'm going to be all over the place people. I'm sorry, but what does your treatment plan look like now?

Mackenzie:

So right now I am hooked up to an IV poll eight out of 12 months. I get iron every week religiously for three hours. That kind of helps, but not really. I take prednisone. I take fear set for my migraines. I get my flare ups tile and all. I'm trying to get back on my humera injection but insurance doesn't like to cover anything these days. So it's just pretty much these little medications here and there, trying to stay active, have a healthy diet with no dairy, no gluten, all this crazy stuff that they say it's an auto inflammatory diet. It's like eating nothing And then getting, realistically, three hours of sleep. Oh my gosh.

Jen:

Yeah, absolutely So. They don't even have you on a DMART or anything either.

Mackenzie:

No, because they said it's because I'm 22. I should still try to figure out healthy, holistic ways and have minimal medication. I'm like when I can't walk, i still have to take care of my kids. That's a problem to me, but nobody listens.

Jen:

And this is a rheumatologist right.

Mackenzie:

Yep.

Jen:

That's lovely, because I mean, i guess in my mind, especially with the rheumatologist I have, you want to slow down the progression of the disease.

Mackenzie:

Exactly.

Jen:

So being diagnosed at 13 and kind of not really treating it very well, eventually you're going to be like some of these young people we know that have had knee replacements and stuff like that, and that's the last thing you need on your plate.

Mackenzie:

Yeah, and that's what I say. I had a hip surgery at almost a year old because my joints and my bones were so weak already. They actually broke my joints, doing the reflexes that they do with all newborns seeing your body parts, and stuff like that. So I was a spica cast for almost a whole year And now one of my legs is about two inches longer than the other one, which messes up my gait anyway. So I have more pain in my legs And then my bones already have like authoritis, like in my hands, my feet, my ankles, my hip. So I'm like why aren't you helping me? I'm only 22. I don't want to be in a wheelchair when I'm 40. Like hello, absolutely.

Jen:

Absolutely OK. so dumb question, but just going to a chiropractor help at all with the gait issue.

Mackenzie:

So I tried the chiropractor and I feel like it makes my pain worse. I like done physical therapy. I've tried the aqua, like swimming therapy. It's just everything hurts, especially when you're moving around, but then you hurt when you're laying in bed all day. So it's like lose, lose. You're hurting all the time.

Jen:

It's a matter of finding that middle ground, Like what doesn't hurt the most.

Mackenzie:

I hate that way.

Jen:

I tried the aqua therapy for a while And I was in my 30s. My kids were in middle school. I mean, the same age as one of my kids. So going to the gym and doing this aqua therapy when my kids are off playing and having fun, and I'm with all the old ladies Yeah, that was super fun. And they're all looking at me like why are you here? Are you pregnant? Like what's the deal? No, i'm just trying to do something to be active.

Mackenzie:

Yeah, yeah, i'm 22. And I was like you shouldn't be in pain, you're only 22. I'm like arthritis goes in every form. My kid is two years old and has arthritis. Like kids can get arthritis to hello. And then everybody makes fun of me because I play on a coed softball team And they're all older adults like 40s, 50s, sometimes 60s, and they're like you're fine, you're fine, i don't have arthritis. I'm 60 years old. I'm like well, guess what? I'm 22 and have arthritis, so mind your business. And how about that?

Jen:

People just don't get her. They just don't. And OK, so you're a humera. You did injections. You didn't go to your rheumatologist for infusions.

Mackenzie:

No, I had to go through the hemmatologist for infusions because the rheumatologist, i feel like around our area, since it's not a rural area, but it's a small town, so the doctors don't really listen because I feel like they're not knowledgeable enough on these type of things. It's unfortunate, and I don't have the means to drive 12 hours to a good rheumatologist yet.

Jen:

Yeah, i hear you. You know where I moved now. I technically am rural but I also, if I drive 30, 40 minutes, i can be in Vancouver, portland, or I can drive an hour and a half or two and be in Seattle, but I actually I drive four hours just to go back to the rheumatologist I had before I moved here because I don't want to start over.

Mackenzie:

Yeah, it's hard starting over when you move. Nobody thinks about that. Like military, people just say they have to PCF every four years and if somebody has auto immune or auto inflammatory disease they have to find a doctor every four years. I'm like that couldn't be me.

Jen:

No, thank you, No, no, especially because you never know what they're going to be like. Yeah, and so if you get a good wine, do try to do what I'm doing Go virtually as often as you can and then make it one time in person a year.

Mackenzie:

That's what we do with Josiah's rheumatologist, because she's two hours away And we do a virtual every, i would say, two months, and then at the six month mark we have to go see her twice a year, which I mean it consumes gas but we try to make like a day of it, like we'll go like to the zoo or something, make it worth it pretty much.

Jen:

Absolutely. I mean, that's exactly what I'm doing. I still have family and friends over where I used to live, and so to me it's like, okay, well, i'm going to make a trip out of it, i'll stay a whole weekend or whatever. Take my husband along, you might as well. And then it probably lightens the mood for your children too, because then they're looking forward to it as, oh, i get the zoo day and all these fun things, and so that's good. Well, i just commend you for all that you do, and I think it's wonderful that your children have a mother that understands. You're going to be able to help walk them through this journey, as tough as it is, because you get it.

Mackenzie:

Yeah, and it's hard. I mean, i could imagine coming from parents or family members who don't know. I could imagine my husband being sick, like I am, and then having a family who is judgmental and they don't listen or they don't care or they don't want to talk about it, because then it makes you suffer and then it's like a cycle, like a generational thing. Then your kids feel it and it's like ugh. I don't want that for my kids.

Jen:

Absolutely. So, looking back, what do you wish you'd known at the beginning of all of this? I mean, granted, you were young, but is there anything you wish you would have known?

Mackenzie:

I wish I stood up for myself more. Like Granted, i was a minor, my mom did most of the work, but I wish I had the voice that I do now, because I mean 13 years still becoming a teenager, because I feel like a lot of 13 year olds, these days at least, definitely are very outspoken and disrespectful, but not meaning that I wanted to be disrespectful, but just stand up for myself, because I would tell my mom things and then my mom would tell them. I wish I did it myself, because maybe it would have been different, coming from the patient and not like the caregiver per se.

Jen:

I'm just so lucky, i'm so happy There's the word that your mom was able to advocate for you and just really fight for you because she got it. That's great, because not a lot of children have that And sometimes a lot of parents are like, well, it's growing pains, or it's this or it's that, and that's not always the case, and you know. Okay, example So I have a daughter that is 23 and all through middle school and high school she was always having wrist pains and all kinds of miscellaneous aches and pains, right, and she did volleyball, she did track, and we didn't think anything of it. She didn't think anything of it And then, after her pregnancy, all these blood markers started coming back. She finally told the doctor like, look, i'm having hip pain, hip problems, and they came back and sent her to my dermatologist. She doesn't have RA, but she does have some auto inflammatory issues going on. We had no idea And she had a mom with RA. But I mean, honestly, it seemed like, okay, well, maybe you know, maybe she's throwing the ball wrong or whatever. I mean, even she thought that, we thought that it was Yeah.

Mackenzie:

That's a big thing and that's why, like, i want to be a rheumatologist, nurse practitioner, because I believe that if you come from a family history or even one person like, just say, like a grandma and a skip to your mom, they should automatically be tested, like for auto inflammatory and autoimmune markers at birth. I feel like it could cost so many good research things and then suffering for kids because I suffered for 13 years. Like that's not fair.

Jen:

Well, and even if you're not showing signs and symptoms yet, at least they know what to watch out for. Exactly My gosh, Okay. So next question for you your Spoonie Toolkit. What are the top five things that are in your Spoonie Toolkit?

Mackenzie:

Hmm, that's a good question. Definitely I like food. Food is one. Food is comfort Medication, like sleeping in bed My bed was my like, like temperpetic pillow, because I like that. And then just like support from all the like guys, like the groups that I'm in, and then my kids, because my kids make me warm inside. I love it. That is a great toolkit.

Jen:

I love it. Okay, so what tips and encouragement? do you have any advice or even mindset tips for people in a similar journey to yours? Just be strong, i mean, there's nights where I cried in pain.

Mackenzie:

Like a couple of weeks ago I was in a bad flare. I thought I tore my road to your club. I got moved. I was like propped up on my recline. I was like what's wrong with you And I'm just like I'm just in so much pain I just want to go to the ER. But going to the ER, they're not going to do anything for me, They're just going to make your fine, go home, take some Tylenol. So it's like, just be strong, You're going to get through it. Like, just hold on. That's what I tell myself. Like just make it one more day. Like just you'll be okay.

Jen:

I'm going to prove baby steps because, hopefully, how I feel today, i am not going to feel tomorrow.

Mackenzie:

Exactly Like it's gonna be all right, Like, unfortunately, we're all. All of us in this group feel the same way. It's sad that comes unsat, but we have each other to lean on. Pretty much Just vent to somebody.

Jen:

I love that. I love the fact that we can just easily get online and I can be like oh my gosh, Mackenzie, this is what I did yesterday. What the heck? Any tips for me today? We're just, we're just vent, We can vent.

Mackenzie:

Exactly, or even advice, like I need help with this doctor. My doctor is saying this or do you have any new like auto inflammatory diet recipes? I'm always asking people for new recipes for me and the kids.

Jen:

Oh yeah, oh my gosh, definitely. And I came across an account. I'll have to try to find it and send it to you. There's something I'm going to try to make this week. It's definitely not AIP, but it looks amazing And it basically is like an ice cube tray. You drizzle some chocolate in the bottom, put some peanut butter and some peanuts and then mash up raspberries. That sounds good. When it's done, you have these like little ice cube shaped delicious treats. Oh, that sounds so good. I know I saved it last week and I'm like, oh, i've got to try this, but I've been waiting for my daughter to get here and she's not getting her to health Friday, so maybe I'll make them Thursday. Thursday, i have to try it first, right, okay? so Okay, staying positive. How do you maintain a positive outlook despite the challenges that you face?

Mackenzie:

It's hard, i'm not going to lie. There's I'm such a pessimistic person, i am so negative all the time, i'm not even going to lie, and my husband hates that because he's so like happy And I'm I just like. I'm like because you don't get it, you're not in pain all the time, you can be happy, you're not living like. But then he's just like listen, you have two kids. You could be like starving right now somewhere in a third world country. I'm like, all right, you're right Like, let me out. So it's just think about it Like there's someone always going through something worse than you and you just need to just suck it up and be like this is my life. These are the cards that I dealt, got dealt to like this. It is what it is just got to deal with them. Be happy and it's hard. I'm not going to lie Like. I'm not going to be like oh, i'm a great happy person all the time. Because I am not. I am miserable And I feel like it can robe on your kids, so try to hide it.

Jen:

How to hide it. the best you can, let it slip out to the people you need to vent to, the best you can when you need to. I read all the things.

Mackenzie:

I go to therapy. I go to therapy twice a week And I can definitely tell you my therapist should get paid more, because I go in there screaming sometimes on how miserable I am, but then I'm 100 times better and I just want to go though.

Jen:

So I feel like if I still went to therapy, I'd want to just lay on the floor and be like okay, heal me, Can you hear me today? just heal me.

Mackenzie:

That's how I am like. You know why is this is going to stop, like I'm 22 and I am probably going to live like 200, my luck.

Jen:

Yeah, i don't know about you, but the genetics in my family, they freaking die old. I've had a great grandma with RA. I've gram, let's see Yeah, a grandma with arthritis issues. I mean, you name it. They all live to be in their 90s. I'm going to be old. I'm going to be old and miserable. So I got to find a way to just get there and be old and miserable.

Mackenzie:

That is so funny.

Jen:

All right, so let's talk a little bit more about your kids.

Mackenzie:

OK.

Jen:

I'm not sure really what to ask, just because I'm not completely familiar with what you're dealing with. But what do you want to tell them?

Mackenzie:

They both have autism. I mean, jace, it took him till he was four to start talking. Now he doesn't stop talking And it's like great, like now it's the total opposite. You'll talk to people's ear off all day. But I love it because he came from being non-verbal to overly verbal. So I'm like OK, at least you can express what you want. Josiah, he is non-verbal And they think part of it is because he has autism. But with his rare disease some kids go deaf And he failed all his hearing tests so far And we actually just met with an audiologist and they're thinking about hearing aids in the future already. So I'm like great. So maybe once we get his ear subsituated he will automatically start talking, which that would be wonderful, because he can't regulate his emotions right now. What else? Jace has the blood disorder And Josiah has a rare disease which it's hard to manage. But we're figuring it out. I mean, we have a little group I think there's 10 of us in the US, but everywhere else is international. So it's nice to connect with families all over the globe.

Jen:

Oh, absolutely, and you guys can give each other not only support and venting but tips and advice on different things that people are trying or who to talk to. That's fabulous, those are important things to have.

Mackenzie:

It's awesome, but it's sad at the same time because you still feel alone, like we're the only one in New York so far with this diagnosis And they don't know how to treat it. They pulled out a medical report from 80 years ago And they're like here you go, this is diagnosis. And I was like OK. So you're telling me, this book is so that my kid can have kidney failure, be deaf, blind, in a wheelchair arthritis. But now you're telling me, well, medical stuff has advanced, there's chances that he won't have this. So what is it? You're confused, as a mom going through this for the first time And they don't know what to say. And they just are like well, if you have any knowledge, just or bring it in. I'm like great, i feel alone here.

Jen:

It's almost like OK, I think you're trying to do your best, But maybe you need to recommend. I see someone else.

Mackenzie:

Yeah.

Jen:

And that's OK. If they don't know the answer, it's OK for them to refer you to someone else.

Mackenzie:

Yeah, right now we are trying to get him into the Mount Sinai Clinic in New York City, but it's hard because insurance doesn't always cover everything And I'm like so I'm going to pay thousands of dollars, but I would do anything for my kids. So it is what it is.

Jen:

I wonder if there's any kind of programs or assistance of some sort.

Mackenzie:

I have to look into it. We've been trying to reach out to so many different rheumatologists, like in Philly, new York City, boston, and unfortunately all these good rheumatologists have long wait And nobody talks about the wait list. My kid's going to be 10 years old by the time he gets in, so it sucks.

Jen:

OK, i'm going to put a plug in right here. If anyone has any knowledge and information that can help, please reach out to Mackenzie or myself if you need to. Let's get Mackenzie the help that they need for their children. OK, let's do it. Let's do it right now.

Mackenzie:

It's frustrating It is, but he's such a happy boy for what he goes through. He's happy all the time. And he was so sick before we started his biological injection And now I definitely see a difference. But there's still always long-term effects in every auto inflammatory disease, unfortunately, so it's just rolling with the punches every day.

Jen:

I mean that's really the best that we can do, right? I mean, you're doing all the right things. It just sucks when we want to be able to do more.

Mackenzie:

Yeah, it's just sad Because they're not the normal kids. We can go to Hershey Park for a week or Disney World and have summer vacation. It's hey, we have five appointments this week and five next week And we're going to be admitted into the hospital to get your confusion this week And you have a sleep study or EEG always something Nobody gets a break.

Jen:

I hate that for you, i just do.

Mackenzie:

Hey, they have a good morning. So I'm just like maybe God bless me with these kids because they know I can handle it And my patients sometimes it's been, because they're also the typical four and two-year-old where they're crazy painting on my walls, running down the street, throwing my cell phone in a toilet, just being menaces. But I love it. I love being a boy mom.

Jen:

Yeah, i mean, there's nothing like it right.

Mackenzie:

Oh gosh, I couldn't even imagine how to have another one. Jace is asking for a baby sister. I'm like no way, No way, You got multiple personalities in your little toddler body. It's like having 12 of you around here Absolutely not.

Jen:

My gosh, i know our grandson is, he just turned two And Wow, you know, whenever people are like, oh, you know, at least you're still young to be able to have fun and play and all the things, and I'm like, yeah, that's true, but, holy cow, i forgot how crazy they are.

Mackenzie:

My mom can only handle them for one day. She has RA too, so she's always in pain and then they like destroy her whole house And she's like you need to come get your kids. I'm like you all do, love being a grandma Like keep them for a week, give me a break.

Jen:

Yeah, when my daughter and grandson are visiting oh my gosh, he was. We have this little tent for him in the living room And he's like Nana, nana complain the tent. And I'm looking over at my husband and I'm like get down here, come on, papa, you need to get on the floor. It's your turn. My back hurts, My hip hurts, like come on, your turn.

Mackenzie:

Exactly how my kids are. They make four to mom and she's like I don't know how I did this 23 years ago with you. Like my sister is 14 and she's like I'm just done.

Jen:

I don't know how we do it either. We just do. We just do. Sometimes we have no other choice. We just do the things we do because we have to.

Mackenzie:

Definitely. I can't even imagine. I don't know how it's going to be like 20 years when I have grandkids, or 30 years or never. I hope never.

Jen:

You're going to be just like you, but a little older.

Mackenzie:

So scary.

Jen:

You're going to be the fun grandma. Okay, i just know it. You will be All right. I can't think of any other questions, but is there anything else we haven't talked about that you would like to bring up?

Mackenzie:

I don't think so. I mean, july is juvenile arthritis month, so I hope everybody's supporting Yes, you better be.

Jen:

Get out there and show us, show us how you're supporting. You know there's a challenge going on on Instagram that myself and make account for Danny are doing, where we're telling people to choose movement however they can. So you can do that if you want, although I guess by the time people hear this episode they won't. The challenge will be over. But choose movement anyway. Hey, next year Exactly. And you know, just do your best to support everyone. You know, do more, do more, get involved.

Mackenzie:

Definitely agreed 100%, and being kind to each other. I mean, not everybody's illness is visible, so be nice.

Jen:

Absolutely. And, oh my gosh, i don't know about you, but I saw a post this morning from Cheryl arthritis life, cheryl, okay, if you didn't see it, go watch it. And she's talking about a message that she got from somebody saying that they have arthritis and it's not considered a chronic illness.

Mackenzie:

Whoever said that's lying.

Jen:

Oh, what kind of arthritis do you have? because there's many different kinds, there's like 100 different kinds. Yeah, and it is considered a kind of illness, because anything that lasts longer than what a year is considered a chronic illness.

Mackenzie:

People are so like I'm, so makes me mad.

Jen:

Absolutely 100%. Well, thank you for joining. It has been such a pleasure, and don't run away. I have to hit stop, but I still want you here anyway. So everyone go follow Mackenzie joining her journey. She's a hoot and a half and so much fun to just talk to All right. Until next time, don't forget your spoon.

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Advocating for Understanding and Testing
Spoonie Toolkit and Staying Positive
Parenting Special Needs Children
Arthritis as a Chronic Illness