Chronic Slay

After grappling with juvenile idiopathic arthritis since she was just 15, our guest Ali shares her transformative journey from denial to empowerment. Allie's story is one of incredible resilience as she navigates the physical challenges of surgeries and isolation, ultimately finding strength and purpose through movement. As a certified personal trainer, Ali now inspires others with similar limitations, offering hope through her personal experiences and highlighting the critical role of community support.

We don't shy away from the harsher realities of life with chronic illness, discussing the emotional weight it carries and the impact on social interactions and personal identity. Through stories of surgical recoveries, mobility aids, and the mental toll of chronic conditions, we explore how essential understanding and empathetic friendships can be. Our conversation also touches upon the scrutiny people face in public spaces, especially as they age or navigate parenting challenges, all while finding humor and confidence along the way.

Social media emerges as both a challenge and a lifeline, with discussions around criticism and the misrepresentation of those with chronic conditions in the media. Despite this, platforms offer a supportive space for sharing and understanding, as illustrated by personal stories of connection and motivation. We reveal how fitness can be adapted to suit individual needs, turning exercise into a communal experience that fosters new dreams and aspirations despite chronic challenges. Join us for an episode filled with personal insights, candid discussions, and the unyielding spirit of those living with chronic illnesses.

Instagram / TikTok / YouTube  @anotherdaywithra

Website: www.anotherdaywithra.com

Ali DiGiacomo

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

• 0:00 Chronic Illness Journey
• 11:31 Navigating Chronic Illness Challenges
• 22:27 Friendship, Aging, and Restaurant Adventures
• 28:03 Social Media Criticism and Backlash
• 38:53 Revealing Life as a Production Assistant
• 45:22 Finding Fitness Inspiration With Rheumatoid Arthritis
• 53:46 Fitness Accountability and Motivation

Transcript

Jen: 0:08

Welcome to my Spoonie Sisters podcast. Today I am thrilled to introduce Allie, and she is a truly inspiring advocate in the chronic illness community. Alli's journey began at just 15 years old when she was diagnosed with juvenile idiopathic arthritis. From undergoing multiple surgeries, joint aspirations and various treatments, from pills and injections to infusions, allie has faced many physical and emotional hurdles. She knows firsthand the struggle of feeling alone and misunderstood, but she has turned that experience into a mission to connect with others and raise awareness. Allie's journey took an exciting turn when she found a way to embrace movement despite her limitations. Even becoming a certified personal trainer, she's now helping others learn how to move their bodies in safe and enjoyable ways. I can't wait to dive into Allie's story with her today, her insights and the empowering work she's doing to support the community. Hi Allie, how are you Hi, Jen.

Ali: 1:08

I'm so excited to be here. I'm good.

Jen: 1:10

How are you? I am doing well, and I'm just so excited to see you again.

Ali: 1:15

I know we could talk honestly for hours, so we will try not to go too too long, but I'm so excited.

Jen: 1:21

I know and you know, I told you before we started recording, but I absolutely mean it. You're welcome to come back on the podcast anytime, I would love to have you. You could be a fun guest host as well. We would have blessed.

Ali: 1:33

Oh my God, we would, we would, yes, absolutely. I will be back people, I will be back.

Jen: 1:38

Yay, let's dive in and start by telling people a little bit about you. So can you take us back back to when you were diagnosed with juvenile idiopathic arthritis at 15, and how did it affect your life and daily routine at that time?

Ali: 1:52

Absolutely yes. I was 15 at the time. I was living in boarding school in the United States because I grew up in Saudi Arabia. So where I grew up everybody goes to boarding school for high school. So my parents were in Saudi Arabia and I was in boarding school. I believe my mom was visiting me for a spring break thing, because I remember her being there.

Ali: 2:11

I was a swimmer. I was in the pool and I couldn't keep myself above water, which is I went to the Junior Olympics twice. So the fact that I couldn't keep myself above water, yeah, it was strange. I'm a very great swimmer, so super weird. So I get out of the water. My knee is three times its size. My mom was there visiting and so we all immediately thought injury right, but it's quite hard to injure yourself swimming. So I was like, okay, strange, but let's go with it. We go to the hospital right away and they drain my knee and the doctor immediately was like I think this is arthritic. And I was like strange, and I was so young, I was 15. My mom was like that's strange that you will say arthritis right away. But he was correct because I did end up having surgery later that summer in Saudi Arabia and the surgeon said that when he was in there my joint looked like that of like a 65-year-old, yes, and I was 15. So he diagnosed me with juvenile idiopathic arthritis. Then it was called juvenile rheumatoid arthritis. Now it's juvenile idiopathic arthritis. Then it was called juvenile rheumatoid arthritis, now it's juvenile idiopathic arthritis.

Ali: 3:15

I was diagnosed with that and I didn't tell anybody for some reason. I think I was in denial. I was also very young. So when I went back to school that semester after summer and after the surgery, I just told everybody it was an injury and I didn't elaborate and I don't know to this day why I kept it a secret. I think it's really just the denial. And I was so young I don't think I realized it was going to be a chronic condition, something that I'm going to have for the rest of my life.

Ali: 3:44

And because I didn't have to go on medication right away, I was actually really lucky that I was able to go back to the States unmedicated. I did have steroids for a little bit, but I was fine. I mean, I had to have my knee drained one more time, but the surgeon was like you're probably going to be okay for another six years and he was correct. I was fine for six years and I think because of that chunk of time I was in denial. I had a chronic illness.

Ali: 4:06

So when it came back full force and very aggressively, I was in complete denial. So I was getting my knee drained once a week for seven weeks in a row. So I got seven knee drainings back to back. My rheumatologist was like I refuse to drain your knee again, you need to start medication. I went to many doctors during that time period and maybe saw over 10 different doctors, because it was Christmas break and I was traveling to the Northeast and to the Southeast so I would see a doctor everywhere. I went to drain my knee, of course, and fast forward. I had surgery again. It was confirmed it was rheumatoid arthritis. So I've had RA for 15, 16 years now. So I got diagnosed at 15 and I'm 31. And that is my diagnosis stories and I've been on about 10 different medications ever since then.

Jen: 4:55

Do you feel like the treatment plan that you're on right now is kind of keeping you at an even keel? I think so.

Ali: 5:02

So, on top of the rheumatoid arthritis, I do have an undiagnosed chest pain condition, and that if you follow me on Instagram, everybody knows this. We don't know what it is and I've had it for 10 years now and I've had every single test under the sun done. I've seen every single doctor you can see, and we still don't know what it is. So the RA is being managed with my medications. If it wasn't for the chest pain, I would be thriving. I would probably be in a medicated remission.

Ali: 5:28

So, yes, the medication I'm on right now is Orencia and I'm also on Cymbalta, which is an antidepressant, but I'm actually on it to treat rheumatoid arthritis and that has been helping the chest pain a little bit, because it's supposed to block the pain pathways to the brain, something like that. So the Cymbalta is helping about 50% and the Orencia is helping my RA completely. My joints feel lovely. Of course, I have joint damage, so I obviously I'm going to have some pain in my fingers and such, but I'm able to work out. It's just the chest pain that is not under control. So I'm like 50, 50.

Jen: 6:03

Do you feel like there's anything that helps your chest pain at all?

Ali: 6:07

No unfortunately just stretching.

Jen: 6:10

I feel like we've all watched you go through this and been crying along with you and watching you try all kinds of things, whether it be, you know, like KT tape or I don't know yeah.

Ali: 6:21

We've watched it. It helps a little, I guess, like it helps helps. I don't know it helps give it. It's kind of like when you wear KT tape or like a joint sleeve it gives you a little bit more support. So it does help give a little more support. But yeah, the pain still comes, unfortunately.

Jen: 6:36

I feel like we're going to get back to that one again but, is there any alternative therapies that you do along with your medications?

Ali: 6:44

Good question, I've tried a lot and I love incorporating like natural remedies as well as the medication, like they go great hand in hand and that's okay. If you do both or if you just do the medication route, it's totally fine. But what do I do? So I do a lot of self-care, and I know that's probably not an option, but I love doing self-care because it helps my stress levels and so I incorporate a lot of CBD lotions and in the evening I'll do my whole face skincare routine, which, thank you, gen Zers, because our generations did not do skincare at a young age and so, because of TikTok and the Gen Zers, I'm like okay, thank you, this little millennial baby is very excited about it.

Ali: 7:23

So I do a skincare routine, I do the CBD lotions, I try to stick with my vitamins I take and basically that's really the only natural thing I do. Of course I stretch and I do fitness, because I am a certified personal trainer and so I do workouts every single day and I do make sure I stretch every single day, especially with the chest. So that's really all I do. I don't really I should get massages more often and I know some people do cryotherapy, but really I just do fitness, vitamins, stretching and self-care at this time, but I'm open to learn about all of the other natural ways that people help their chronic illness.

Jen: 8:01

I really want to try the cryotherapy, but I'm kind of terrified.

Ali: 8:04

I'm terrified. I know people have died but that's because they just got like stuck in there, but I am just like terrified of how uncomfortable it would be.

Jen: 8:12

And all these people doing the ice baths.

Ali: 8:15

I mean on a very hot day. I definitely feel like.

Jen: 8:18

I would love that, but it's also terrifying. I don't enjoy being cold.

Ali: 8:22

No, I absolutely hate it. Being a swimmer as well, having to jump in a cold pool, it's like I have like I just maybe have some trauma from it. I don't want to do an ice bath. I don't think I've ever done. I've jumped in a cold pool, Like I was at a hotel spa situation and they had like a cold and hot pool. That's the closest thing I've done to an ice bath. But I mean, people love it. I just think it's scary. I don't want to do it.

Jen: 8:48

Have you ever considered doing one of those salt pods? Have you those?

Ali: 8:52

no, oh yes is that where you like float?

Jen: 8:55

yes yes, yes. So I've done it once and it was amazing. And for those people that don't like feeling like it's too silent because that, because that can seem a little scary, yeah, there was something beautiful about it. You know you get into this. It's just, it's an amazing room that you walk into at least at the one I was at, and I'm sure most of them are about the same you feel like this whole spa experience, right?

Jen: 9:19

You go in there there's a shower that you can shower in before you get in, cause they want to make sure you're clean, obviously, and then you get in there. You've got earplugs so you don't get it in your ears, and everything, and the one that I used had a choice to have different colored lights going if you wanted or you can have a pitch black, and then you could choose to have music or have it silent.

Ali: 9:39

Did you do silent?

Jen: 9:41

I actually did all of it I wanted to try it all. So I did moments of silence, I did moments of music and then I tried the lights and I did get brave and do the pitch black. I wasn't a fan of that. I don't think I would be a fan but an, an hour in such a relaxing space, ooh.

Ali: 10:00

Ooh, that's I need to try that. You should definitely try it.

Jen: 10:03

I've definitely heard of it. Everyone needs to try it at least once. It's amazing.

Ali: 10:07

And how do you do the music Like?

Jen: 10:11

do you have like a remote or something? Or do you tell somebody it had, like it had buttons above my head that I could push? Yeah, are you.

Ali: 10:15

It's not like a, it's a pod, but like are. Do you feel claustrophobic or no?

Jen: 10:19

I didn't. Oh, I didn't. Okay, I mean, it's easy to open, so that's great. There's no way of getting stuck in there, oh what do you mean open?

Ali: 10:27

Does it like close over you?

Jen: 10:29

Yeah, you can pull the lid down, but if you don't want to, if you don't want to and it like makes you nervous, I'm sure you can leave it open. But it's just, the water feels silky on your skin. I mean, it just feels decadent. It's an experience that I don't even know if I can put words to it's absolutely yeah, it's like a Zen spiritual thing, almost.

Ali: 10:50

Yeah, wow, I'm going to have to try it. You should, you should.

Jen: 10:54

I don't know if it actually helped my joints at all, but it was worth trying Mentally it helped.

Ali: 10:59

It sounds like.

Jen: 10:59

Absolutely, absolutely. I would love to try it. Yeah. Next question You've been through multiple surgeries and treatments over the years. Which of these experiences do you think had the biggest impact on you, physically or emotionally? Do you think had the biggest impact on you physically or?

Ali: 11:16

emotionally oh, I know that's a tough one. Oh, wow, yes, let us see so physically, the arthroscopic knee surgeries I've had I've had two and it's been great. I loved each. Loved is not the best way to explain it. It was a very simple surgery. I did have complications afterwards, but it had nothing to way to explain it. It was a very simple surgery. I did have complications afterwards, but had nothing to do with the surgery. It had more to do with the pain medication I was on and the constipation you get from the anesthesia my God, the worst. So if you're going to have surgery, just make sure you have some Miralax or any type of something to help you go to the bathroom. So, besides the hell I endured after, it did help my knee a lot and I actually had someone in my DMs asking if they were afraid to do an arthroscopic knee surgery. Basically, the doctor went in there and shredded up all of the I say gunk. That happened because of the synovial fluid that kept coming into my knee and so after they shaved it, took it out, I felt a lot better. Of course I had to go on medication but, like I said, the first time I didn't have to go on medication. So I had a lot of damage in there, a lot of scar tissue, a lot of issues. Scar tissue was from the first surgery and I really loved it Loved. It is terrible but, like I said, I did feel better. So the arthroscopic knee surgery helped a lot.

Ali: 12:31

The other procedures and surgeries I had, they might've been due to arthritis Again, I have, like a lot of conditions and we don't know what they are. So I did have chronic appendicitis for a while, which was really interesting and you would think cause. Usually appendicitis happens quickly and you get it taken out. I had it for five years. It was a long story but that was the worst out of it all. But yeah, so I would say the arthroscopic knee surgery was definitely best. But that's an interesting question. I've never been asked that before. I like that.

Jen: 13:01

I'm glad. How did you feel when you reached the point where walking without a cane became impossible, and how did that experience shape your outlook on your condition? Ooh, this was that was hard.

Ali: 13:14

That was a hard time of my life. So when the arthritis came back, it was the six-year period after I had my first surgery. I was 21 and it was really rough. So the day I realized I needed a cane, it was actually the day Star Wars came back, I remember, and I was with my boyfriend and I couldn't walk, I couldn't make it to the theater. So I was like we need to get this knee drained as soon as possible. But I couldn't get an appointment until after Star Wars. And I remember he went it was the premiere and he went to CBS and got me a cane. It was a beautiful cane with butterflies on it.

Ali: 13:49

I realized canes aren't that great. I was like canes, aren't it? So I had to get crutches. Actually, I tried, the cane didn't work. And I just remember getting to the premiere when there were steps there and it was challenging. He had to carry me up the steps and there were no because it was a premiere, it was packed, there were no handicap seats available and we were.

Ali: 14:12

It was a huge theater. We were in the middle, like at the front, like close to the front row, and I had to go to the bathroom twice during star Wars, and I couldn't. I could barely make it to the bathroom. And I just remember my gosh everybody must be staring at me Cause I'm like crying in the middle of the theater trying it. We're in the middle, I'm trying to get by everybody. I'm limping, I you can't put pressure on it when it's full of fluid your knee and I just remember crying in the bathroom with my cane, thinking how did I get to this point? Why is this happening? And again, I was in denial. I had all right so to go from being in denial and being totally fine one day to crying in the middle of a theater because I can't make it to the bathroom. It was exhausting. And that went on for seven weeks because I was so in denial that I had RA that I thought it was something else that could be fixable, basically something that could be treatable and that it wouldn't be chronic. So for seven weeks I was battling depression and anxiety, seeing multiple doctors and just praying to whoever rules us that this is something that can be fixed with surgery. This is something that can be fixed overnight. This is something that can be fixed with surgery. This is something that can be fixed overnight. This is something that can be fixed with medication and go away. And yeah, it wasn't until the surgery I had six months after that. That confirmed I definitely had already and it was mentally draining.

Ali: 15:30

It wasn't easy. I didn't know anybody with a chronic illness. I got in fights with my friend because I was so negative all the time and it was completely valid for my friend not to want to talk to me because I was just so negative and I didn't realize that I needed someone like you, like a friend that understands exactly what I'm going through, because it's great to have somebody that you can vent to. That gets it. Because at the time the only three people in this world that knew I had it were my mom, my boyfriend and my best friend. So, just being negative with them all the time I'm sure it took a lot emotionally for them and me as well. Like I understand why they were upset and, yeah, if I had a friend that understood what I was going through, maybe I could have vented to them and then been more positive with my family. But yeah, it was a really hard time mentally and that's why I started bringing awareness online, because shortly after I just couldn't take it anymore.

Jen: 16:16

To be 21,. To be going through that. Yes, and you're feeling absolutely alone in it, absolutely. You know, I was 31 and felt the same exact way, and I remember the first time my family shoved me into a wheelchair and I was embarrassed because we were at a zoo and I felt like everybody was staring at me, like I was faking and shouldn't be in a wheelchair it's, and so even though you need that thing, that you're using it can be still embarrassing because you feel like everyone thinks that you're an idiot or faking or whatever.

Jen: 16:53

And then there were times where I would get up out of the wheelchair and I'm sure you've probably experienced things like that too where, oh, you get out of the car, Okay, or whatever it is. You know, and everyone's like you just feel it, Even if they're not staring. You can't help, but feel you can't help it.

Ali: 17:09

Absolutely yeah. I've had the same thing, like being in an airport with wheelchair assistance. I was like like, at like, is this okay? Or the fact that I never got a disability plaque or plates for my car because I had imposter syndrome. I was like I don't need this, even though I did. I remember being at a Publix grocery store and limping my way in and I took a video of it. It's on my Instagram and I'm thinking I really should have got the plaque. Why didn't I get the plaque? But I had such bad imposter syndrome that, no, I don't need it. You know, I visibly I'm okay. Sometimes I can jump and run, sometimes I can't, and I still, to this day, don't have one.

Jen: 17:48

And to go with that, sometimes we look at ourselves like, oh my gosh, there's someone so much worse than me. Yes, I don't want to take away from the person that needs it more than me. And I still feel that way. It's hard to get past that.

Ali: 18:02

It is. It is. We should get the disability plaque for the times when it is hard. We don't need it all the time, but the times we do we really need it.

Jen: 18:11

I had a temporary one. I think I had it for a year. I mean, we used it when we had to, but I was always embarrassed and I remember my husband being like even if you're not hurting, make sure you limp a little bit.

Ali: 18:23

Yeah, yeah, I know, because, like, people will judge it's and it's crazy. Maybe these people aren't judging us, but yeah, like show that we're in pain. You know it's crazy, it's crazy.

Jen: 18:42

Well, you know, I had an experience.

Jen: 18:43

Well, it wasn't my experience, it was my sister-in-law's experience and I think that's what shaped my viewpoint and her situation was a lot different than you and I. She had a daughter with terminal illness and she she was two at the time, she passed away at three. So she had a placard and she would pull up into a grocery store and park and then, you know, she's trying to get this, this child out that you know is the normal size of two and a three year old. But you know they're not able to help themselves, obviously. So she's trying to get the child out, trying to get her into, you know, either her stroller or into something so that she can get into the grocery store. And I kid you, not a lady walked up to her and said some nasty things to her and was saying how dare you? You know you look totally fine and she's like actually it's my daughter, she's terminal and I need this extra space and I need to be up close to be able to get what I need to help her.

Ali: 19:31

Oh, it's disgusting.

Jen: 19:33

It is disgusting, and so just knowing that that happened to her it shaped my viewpoint and my worry that people were going to judge me if I ever used it.

Ali: 19:42

Yeah, that's it. Yeah, I would do the same when it went to using the disability bathroom. I would need it sometimes for my knee and I would not use it because I was so nervous of what people would think. And I'm like if somebody said that to you and I now we'd be like no baby, go do it, use it, use the railing. You need to get down To this day. Even though I'm a trainer, I sometimes need support bending down. I have joint damage in my knee. Some days I'm flaring and it's hard. So who cares what people say? Screw them. They're judging a book by its cover, and we should never do that. We, they don't. They're judging a book by its cover, and we should never do that. We're in the chronically ill community. We know what invisible illness is?

Jen: 21:27

It's yeah, Exactly Okay. So my question do you remember when?

Ali: 21:33

you finally got to that point where you were like screw them, hmm, hmm, let's see. You know what it was?

Jen: 21:38

Do you think it was a situation or event that happened that got you to feel that way, or did you just gain that strength somehow?

Ali: 21:45

I think I just gained that strength from this community because even at that time, when I was limping and crying, I still didn't think I needed help, and it's a hard thing for all humans to ask for help. I think we don't want to ask for help so honestly. I think it was just want to ask for help so honestly. I think it was just through this community and talking to friends like you and meeting we meet so many people with different chronic illnesses and hear their story that it's created empathy in me and also just no fucks given Like I'm just over it.

Ali: 22:19

People can be mean and I know what an invisible illness is and if somebody wants to yell at me or bitch at me, I'm over it, I'm over. I'm just over it. I honestly. I think when I turned 30, which was only two years ago, a year and a half ago when I was like I'm, I'm over it. I think when you hit a milestone in age, you're just like that's it, I'm done. I've learned a lot in my twenties and I'm going to learn a lot more, but I'm at the point where I'm just like screw it. So it was turning 30.

Jen: 22:48

Yeah, For me it was turning 40. I finally was like you know what? I raised three kids. Yeah, you did. I know myself, I know what I can handle, I know what I can do, I know who I am.

Ali: 23:02

So if you don't get that, there's the door, there's the door. Honestly, this world is so fucked up and mean we, just we. We're nice people, we do our best and I'm still young, you're still young, we're still going to learn, but we don't have time. We don't have time to fight with people who are yelling at your sister-in-law like that, like we she does. She didn't even have to explain, you know, it's so sad, just like. Please back off, ma'am. I'm calling the cops on your ass, exactly, and you know what she made?

Jen: 23:27

business cards that told about the disease that her daughter had and started handing them to people. Every time they'd be like oh your poor daughter, she looks tired, you should probably get her home to get her a nap. Or every time they'd make the stupid marks, she'd just hand over the card.

Ali: 23:41

That's smart, but also so sad that she had to make that. But that's actually genius. Wow, and so sad.

Jen: 23:49

But in a way it was another screw you, it is.

Ali: 23:51

It's like a fuck you. You're going to feel like shit after you read this card.

Jen: 23:55

They'll never do it again though.

Ali: 23:57

Exactly. Hopefully they'll never do it again.

Jen: 24:03

Because people do need to be put in their place and realize that you don't walk around in public and walk up to people and say that kind of crap. You don't, it's not okay. Were you taught? To do that as a child.

Ali: 24:11

No, like I don't understand. I am actually terrified of having kids because I hear from my friends about. People are like why doesn't your baby have socks on? Why is this and this? Why is that? Why is your baby doing that? Like it sounds terrifying, like I would be like oh my God, leave me alone.

Jen: 24:25

Don't even get me started on the people judging if you're breastfeeding in public too, oh dear.

Ali: 24:28

God, oh, no, baby, I would be tits. I am free the nips. I am all about free the nips. It's probably because I I will breastfeed to the world. If I have a child, I'll be like, look at these boobies, I am feeding a child. You people, like, just sit down, I'm doing God's work.

Jen: 24:50

I know, you know what. I was proud of my daughter when she would do that, because I was. I was terrified. I was like I'm not breastfeeding. Forget that crap. I was paranoid it was going to hurt and yeah.

Ali: 24:59

So yeah, yeah, I love. I still get shocked that your daughter has a baby Like I'm just like and that, like I, you look like you're 25. You're so sweet. It's so funny when you're like my grandchild and I'm like girl.

Jen: 25:14

Okay, you're going to laugh about this. I get, I got denied a margarita the other night.

Ali: 25:22

Love it. I, you should be like. I have have a grandchild.

Jen: 25:24

I have a grandbaby, you're not gonna give me this margarita. I love it, though. Our son wanted to take us to dinner as a thank you for helping dogs sit his dog off and on for like three weeks, so it was him and his fiance, my husband and I and my mother-in-law, and we went to a mexican restaurant and I was like, oh, I'm in the mood for a margarita oh yeah and I ordered one and she looked at me and she's like I need your ID and she was really kind of skanky towards us.

Jen: 25:47

It was different. It was a restaurant I hadn't been to before and I was like yeah, you treat people the way because even just talking to us in general asking our order, she was not friendly and I looked at her and I'm like I forgot my. I forgot, I forgot my purse. I left it at home and my husband, of course, had to like start making fun of me and call me a child and stuff I mean it was. It was so and he made it so much more embarrassing.

Ali: 26:10

Oh my gosh, I would have been like that is my son right there, mind you, and I have a grand baby.

Jen: 26:16

I know, and my son was just laughing and everything and I was like, okay, whatever, fine, I will have. I guess I'll have a Shirley Temple.

Ali: 26:23

So you couldn't get the margarita? No Damn Okay, but you should be pretty proud of yourself.

Jen: 26:28

That's crazy, but that was the best Shirley Temple and they gave me refills, that's right.

Ali: 26:32

I drink Shirley Temples on the reg. Okay, I'm an adult that loves with the extra cherries. Oh, have you ever had horchata? Yes, so good. My partner, travis, is obsessed. Wherever we go that has it, he must get it. They have horchata coffee now.

Jen: 26:49

Sounds amazing.

Ali: 26:50

I want it now.

Jen: 26:51

So we have a restaurant over here in Vancouver is called who's Song and Larry's. Now, by that title, what would you think it is?

Ali: 27:02

science, like a pub type situation, like a, honestly I know, like a regular american food is really I would say it is a mexican restaurant, it's a cantina interesting good for them and larry.

Jen: 27:15

It was two friends and that were their names that's cute.

Ali: 27:19

That's cute. I love that.

Jen: 27:20

I know and it's in a restaurant that used to be a Chinese restaurant.

Ali: 27:24

So it's hilarious. So you drive up and you're like what is, what are you?

Jen: 27:29

Yeah, so that's the first time I was like yeah, exactly, but they serve breakfast and they have bottomless mimosas, but I tried their churro pancakes.

Ali: 27:39

Get out of here, god, that sounds beautiful, okay.

Jen: 27:43

So you? So you have that with an horchata.

Ali: 27:46

Mmm, that is beautiful. Okay, so you. So you have that with an horchata. That is a good, flare friendly food. When you're flaring baby, you should go get that Exactly.

Jen: 27:54

Exactly Okay, I took us in a whole different direction. It's all good, okay. It's been, I think, probably a couple of years now, but there was this whole thing that went around and I'm sure you know exactly what I'm going to bring up, and you were one of the people that was being bashed on, and let's talk about it.

Ali: 28:17

The article yeah, the Daily Mail article yeah, yeah.

Jen: 28:18

I was on the. I was like front and center on that baby. I think I got a lot of hate mail from our community.

Ali: 28:21

It did it did so to those that are listening, that don't know what it is. The Daily Mail came out with this article and I don't know if you've talked about it on your podcast before, but I haven't. Okay, it was bashing teens. We're going to talk about that in a second. Teens that post about their illness or fake I should say actually fake their illness for likes and follows. And when I saw the article for the first time, I was actually at a conference where I was going to speak to doctors and pharmaceutical companies about my condition and taking injections the same injection that was in the photo that they used.

Ali: 28:59

I was on the very front and top of the article of a video of mine went viral of me injecting and crying. It was a very vulnerable time of my life and I was about to inject. It was late and I just threw my camera on because I needed the community there and when I film my injections I feel like I'm not alone because I have you guys with me. That's how it feels. So they used that picture and a bunch of other people in our community and they call this teens. So when my friend saw it before we went to the conference, she called me and she was like, um, there's an article and you're on the front cover. And I was like, ma'am, let me look. So I look at it and I bust out laughing because I'm like a teenager. Okay, I'm 30. Okay, like I was 30 at the time. So I loved that.

Ali: 29:44

But then I wrote the article and I was like, ooh, this is very negative, very dark. They were just basically saying that this generation can't control their feelings. They can't. They have to put it on show and that we're faking it. The pictures they used were our Spoonie friends in the ER, like our Spoonie friends at the hospital with IVs on going through surgery and I'm injecting. Like this is terrible. Like whoever wrote the article.

Ali: 30:10

I made a couple of posts about it and I never bashed the person who wrote the article. One, I know it's clickbait. Two, it's the Daily Mail and you can't trust anything that comes out of the Daily Mail. And three, they must've been going through something in their life to be so mean. Because it was mean. It was like a mean article. You have to be a terrible person to write it. So I started bringing awareness about it just because, in case teenagers do read this article, I don't want them to feel like they can't share their journey, because sharing my journey is what got me through depression and I was depressed in the picture they used. So, that's lovely, I was fighting depression in that picture and I was actually taking a social media break when I made that video. So, yeah, it was crazy and we got a petition signed. We got a ton of signatures on that baby.

Jen: 30:55

And that was when I first saw your account and I was first following you, so we didn't actually know each other yet, but I instantly I was like, okay, I'm taking a stance on this, because this is not okay, cause.

Jen: 31:07

I knew you were not a teenager, and I knew people that knew you, and so it was like oh my gosh, this has got to stop. And I remember correctly, when we were diving deep into the article, didn't they also say that these girls were going around trying to teach each other how to look more sick and how to get the attention? Oh my God, yes, yes.

Ali: 31:27

It's like are you crazy? Like you can't go to a hospital and get hooked up with an IV just to get a video done. Like they won't admit you. Like, come on, think about it, this is it's nuts.

Jen: 31:39

Yeah, it was absolutely crazy and we don't need people being afraid to take care of themselves or ask for help or go into the doctor because of articles like that.

Ali: 31:50

Exactly, and also if they ever went to my page. I the reason I posted that video is because most of my page was a comedy. It was mostly just like me laughing, dancing, being silly, making fun of RA, because that's what I do. I make fun of it in a way that, like, other people can relate to it. You know, dark comedy is my thing.

Ali: 32:09

But I posted it because I was like I'm not a toxic positivity type ill fluencer. You know, like a ill fluencer I'm not gonna. I'm not, I'm not. I love it too. I'm not going to be like. I want to prove that I'm not like a toxic positivity situation, cause I'm not. Like. That's not what chronic illness is. It's hard, it's tears and it's rough and I felt alone and I wanted to connect with you guys. And whenever I inject, I throw my iPhone camera on because it makes me feel like I'm with you guys. And I was crying, I was depressed, I was fighting depression. It was 10 PM and I'm like I don't want to feel alone. So I threw my camera on and it feels like I'm injecting with you guys and so, yeah, like it was like the only sad thing on my page. And of course, they grabbed that video and they're like she uses this for likes. I'm like baby I have not cried on this account ever so it was really messed up that they did that. I feel sorry for the person who wrote that article.

Jen: 33:03

The first thing that popped in my head when when I read it too, was okay, what's going on in their lives? Are they trying to hang on to their job? I mean, is this a? You write this or you're going to be fired? I mean, I started picturing all these Hallmark movies of people getting in trouble and about to lose their job and they write something they hate.

Ali: 33:21

Who knows? We'll never know. Well, yeah, I was like honestly, and then Candace Owens, crazy political lady, posted about it as well. Did you see that?

Jen: 33:29

No.

Ali: 33:30

Yeah. So she found the daily mail article and then stocked our Instagram pages and found my TikTok video yeah, and this happened a year after, so I thought it was all over. And then somebody called me and they were like you were on Candace Owens podcast and I was like I don't like that woman. She spews nothing but hate. She before did a podcast on making fun of lingerie companies and underwear companies making accessible underwear for people in wheelchairs. She made fun of that. So this is who we're talking about. And so that wasn't enough for her. She had to go on. She made fun of models being in wheelchairs, disabled models with amputations, and this underwear company that she was making fun of made it accessible that they could clasp their bra together if they didn't have an arm to do so.

Ali: 34:15

Disgusting woman. So she pulled up my video and her podcast is also filmed. So she has a YouTube channel and she has millions of followers as well. So she pulls up my video and she's talking about. She's like this girl is on a toilet and she's crying because I injected in my bathroom and she's crying and she's clearly doing this for likes the injection she do. It she's doing is besides the point. I was like bitch, it's the whole point. Like, what do you mean? It's besides the point, like so I thought that was hilarious as well, but the comments on that video were sick. The comments were disgusting. Same with the daily mail article. It was the. I was like I'm not going to read it. I'm not going to read it. And of course I read it.

Jen: 34:52

It's not worth it.

Ali: 34:54

It's not worth it. But I was like I just want to see what they're saying. Over 300 comments right away about dissing me and they don't even know me. And just there were other women in the video that Candace talked about and I was like this is scary, this is. And then my friend saw it and started fighting with everybody in the comments and I'm like, oh my God, she's like just let me blow off some steam.

Ali: 35:13

Yeah, she was like let me blow off some steam and do this, and I was like, girl, go for it, babe.

Jen: 35:17

But I'm I'm not going to give them the time of day. Oh my gosh, this woman sounds like a terrible person. She is. Yeah, okay, yeah, I feel like we could go on this stuff for hours. Yeah, we could, because I'm sure there's more of it out there. If we haven't had it happen yet, we're going to. It's only a matter of time. I've only received one nasty thing before. What was it? So I reached out to a company called Cadence Adaptive Footwear. So I reached out to a company called Cadence Adaptive Footwear and I was asking them questions about their shoes because I was curious and wanted to try them and see how well they were for arthritis friendly, and they said hey, you know, we'll send you a pair to try, but would you mind, you know, giving us your feedback, you know?

Jen: 36:04

in a video that we could be able to share and I was like, yeah, yeah, yeah, I can do that, but it's going to be my honest opinion, you know, and I did, I have my own kind of quirky humor, right, and I always make these videos and I would call them perfect pairings. Monday.

Jen: 36:17

And I always say it really special to. I'm always like oh, perfect pairings Monday. Well, they decided to make it into an ad on facebook. It became an ad and I would literally turn on facebook and I'd hear my stupid voice perfect. And all these comments were coming on and everything. Some some were really great and some were just people asking questions and then there's this girl that gets on there and starts bashing me and she doesn't know me and she's just like oh, just sounds like an influencer trying to sell some shoes. And so I sat and pondered for a while and I finally wrote back and I said actually I'm not an influencer. I wanted to try these because I have rheumatoid arthritis and I wanted to find out if they were arthritis friendly so I can be able to tell the people in my community in case they will want to try them too.

Ali: 37:02

And.

Jen: 37:02

I happen to love these shoes. They're easy to put on because they're Velcro, but they look like they're laced. They have a wide open toe box, which is great because I have bunions and they're comfortable.

Ali: 37:12

Yeah, yeah.

Jen: 37:14

I don't understand. Yeah, I know. It's like sorry, you're offended by my, my quirky way of talking.

Ali: 37:21

That's like you're also. It's like you're faking that these are great for arthritis. Like it's a strange thing to fake I know. Oh my goodness.

Jen: 37:30

I mean I know that they're an expensive pair of shoe, but I mean there's a lot of expensive shoes out there.

Ali: 37:35

Yeah, yeah.

Jen: 37:36

And all of the ones that are supposed to be great for, like arthritis and bunions and stuff like that. All those kind of things are expensive, they just are.

Ali: 37:45

They are are unfortunately, yeah, and the fact that they sent them to you is great, hell yeah.

Jen: 37:49

Yeah, yeah. So anyway, that was my first hate, yeah.

Ali: 37:53

Yeah, they, they come. It's not common in the chronic illness community, which is nice. You know like other people get like hate on social media, but ours it's not that common, but it happens and it's like where, how? How could you be so mean? Because people suck, they suck, they suck. That's why we're at the age of fuck it. We're not going to take anybody's shit.

Jen: 38:14

Yeah, and luckily, the people to come and listen to the podcast. They are people like you and I, and they are people that want to hear more and learn more from other people.

Ali: 38:21

Absolutely. And if you have a mean person in your life to say, no, we don't have time, we're not going to change your mind.

Jen: 38:28

Exactly.

Ali: 38:29

There's the door. There's the door, bye. There's the block button.

Jen: 38:35

You have shared that having to leave your first job out of university due to your mobility issues was a challenging time. What impact did that have on your mental health at the time? Was a challenging time.

Ali: 38:47

What impact did that have on your mental health at the time? Wow, that's a great question. Yes, so I left the job. I was a production assistant. It was my first big job out of university. I went to school for film and communications, so it was a great job. It was for a reality show, but it was in Florida and there are no union restrictions there like there are in Georgia and LA and such. So when you're a production assistant on a non-union show, you tend to do the heavy lifting and I mean that literally you have to carry boxes from the car to the location. It's a lot of heavy lifting as a production assistant and, honestly for everybody, because there's no, the union rules are like production assistants can't pick things up when they work on a TV show and production assistant is the lowest of the low. It's like the first job you do in the film industry.

Ali: 39:30

So before my knee blew up with fluid in my RA, I was carrying everything and I was fine, but when I got the arthritis that came back after that six-year period, I couldn't walk, of course, and I tried to hide it and I was wearing skinny jeans at the time. This was back when we wore skinny jeans and the producer of the show, who I didn't even know. She flew in from LA, it was her first day on the show. I was trying not to show the fact that I couldn't walk. I was limping. She goes Allie, your knee is three times its size and I can see it through the jeans. She's like are you okay? Do you need to go to the hospital? And I was like no, no, I'm fine, it's okay, I have ra. She was like you're not fine, you need to. She's like you need to not lift anything anymore. And it's funny because the guy I was working with, the other production assistant, saw me and he was like you better hide that or they're gonna fire you. And I believed him and I was like, oh my god, I was, I was only 21. I was like I don't know what I'm doing. So I tried to hide it. And it's funny because he had really bad karma, because once the producer saw I was limping, she had him carry everything for the rest of the show and all I had to do was drive the car. So it was great, but I unfortunately did have to leave after that Christmas break.

Ali: 40:40

So after that seven week period I tried going back in January, but I had just started methotrexate, which is a drug that makes you pretty sick when you start it. That wasn't really the reason I couldn't go back. It was really because my knee was so messed up from going seven weeks without medicating myself. This is why medication can be so great, but I put it off for seven weeks because I was afraid to start it. That's why I really advocate for starting medication as soon as your doctor gives it to you.

Ali: 41:10

So I needed the break and so I couldn't go back, and so it was really challenging because it was my first job out of college. It was a good job too and I had to quit, and even though they were so nice, they were like no, no, you can just drive the car. I was like I love it. So, please, if you ever, they can't fire you for your disability. It's actually illegal. So I didn't know that at the time, but it's illegal. And so and to this day I sometimes don't put that I have a chronic illness. You don't want to. They ask you when you're applying to jobs. I still don't because I'm scared, but it's illegal.

Ali: 41:38

So it was mentally awful. I was sick from the methotrexate and I fought through it. But honestly now, at the time I probably wouldn't have continued on methotrexate, but I didn't think there was an option. I didn't have social media, I didn't know anybody with it, so I thought methotrexate was the only way to go. So I was sick, I was limping.

Ali: 41:57

It was a really hard time. That's when the depression kicked in. That was probably the first time I battled. Depression was because of that, like having to leave the job and also changing my whole career, because I wanted to work on set in the film industry but because of my knee. When we moved to Atlanta six months after that happened, I had to get an office job. I couldn't work on set. So my life would be completely different now If I was on set, I probably wouldn't be where I a hundred percent want to be, where I'm at. But I got it. I stayed in the film industry but I got a casting job where you stay in the office, all because of my knee. So it really shaped my life and it really messed me up mentally because I my whole career changed and shifted because I was in an office and I was no longer on set, which really hurt because being on set it's exhausting but it's also really exhilarating and fun, so it was really tricky.

Jen: 42:43

Are you allowed to share what show it was?

Ali: 42:50

I worked on a lot of show I worked on that I had to quit. It was called Insane Pools Off the Deep End. It was on Animal Planet, but it was basically like this guy would go to the house it was like house hunters but he would like go in, like, do their pool, and it would be the whole reveal at the end. You know, like and all that stuff is fake. By the way, the the family has seen the whole process of the pool being made. They're putting tons of money into it and it's not free, and so it's funny because when they come out to see the pool, the whole family's there, they have a huge party and they're like oh my God, it's beautiful. You know the reveal. They did the reveal like four times. Like it's, it's, it's fake, but it was cute. Like the whole crew was so sweet and nice. But yeah, it was called insane pulls off the deep end, it's on it's still on HDTV or like animal planet, wherever they show it.

Ali: 43:31

It's really cute and I'm in the credits. You could see me in the credits.

Jen: 43:34

It's fun to watch I think you, you belong behind the camera, though.

Ali: 43:38

Yeah, yeah, and I love directing, so yeah, oh, you're saying behind the camera, like in front of the camera.

Jen: 43:51

Behind it, I said behind, didn't I? I I'm agreeing with you because I love directing you think I belong in front of the camera.

Ali: 43:55

I said it totally backwards forgive me, you guys brain fog all the way.

Jen: 43:56

I love when I switch up my words. No, I think you belong in front of the camera because why thank you? You're so much fun, energetic, delightful, I just feel like you should have your own show.

Ali: 44:05

Oh my God, I would love my own show. I love being in front of the camera, but, like, I also love directing. Like I'm not good at acting, but I'm good at like well I am. I like being like talking, like talking with you or doing like news or doing you know, but like when I have to act, I'm like, oh shit, this is scary. Could you imagine what the news would be like if we had people like you and I on there? Oh my god, you know, they would never allow us. They would totally like be like. No, they would be like you guys are not allowed to say any of the things that you're saying because the news is so fake but wouldn't you, wouldn't the news be so much better with it would really normal, like I think we're normal normal people on the news instead of these people that are getting up there and acting all snooty and they, they have that weird special way of talking.

Jen: 44:49

Yeah, I don't even know how to describe it, but I think if we just had more fun I know we should do like everywhere in the world.

Ali: 44:56

Yeah, like a morning fun news update, like kind of like hoda and jenna, I love them on the today show, so yeah, like they're so much fun. I wish all news was like make it arthritis friendly.

Jen: 45:07

Yes, I don't know. I don't know what we would call it. I don't know what it would be about but good morning.

Ali: 45:14

chronically ill baddies, I don't know.

Jen: 45:19

I like that. That has a ring to it. It would be so much fun. Oh my gosh, meeting a fitness professional with rheumatoid arthritis was a turning point for you. Can you share how that connection motivated you to start working out?

Ali: 45:32

Yes, so I actually two things. I met a girl who was working out with RA and was on methotrexate. That's what got me into working out. So when I met her on Instagram, she encouraged me to work out and I started. Now she wasn't, and still isn't, a trainer, but she got me into working out. So then I met um. Her name is Lindsay Hill. She lives in Canada. She's in um. I don't know if you know where she has RA Nova Scotia. That's where she lives. Okay, yeah, so she is awesome. We're such good friends.

Ali: 46:02

We met so long ago, like back in 2018, and we found each other because of the hashtag method, tracks eight. So that's how we became friends and I think I knew her for like a year before I started working out and I was like, girl, how are you working out? Like you need to show me. So she showed me, got me into it, and so I credit her for me getting me into fitness and keeping staying consistent, because she was my accountability buddy, so I would always text her when I worked it out, worked out, and so she really helped me. And then I met my best friend, live, who you know moved to live, and I met her because I was going to start Embrill injections.

Ali: 46:37

So I did hashtag Embrill and I connected with her and then I she saw how much I loved fitness and when COVID hit, I got furloughed from the casting job and she was like become a trainer. Like you have all these people in your DMs asking how you're doing that, how you're moving, and you love talking about it. You're basically being a trainer without being a trainer. So just get certified. Yeah, and I was like you know what I want to get certified so I know the proper terms, I know the science behind it, so I can actually teach people. And so I got certified and I've been doing it for, I guess, four years now. So, yeah, I love it and I love training people and proving to Spoonies that you can move in a fun, safe way, regardless of our limitations.

Jen: 47:18

What I love is that there are so many that are encouraging all of us to move, you know whether it be you uh live for move to live.

Ali: 47:27

There's.

Jen: 47:28

Megan um arthritis.

Ali: 47:29

Arthritis megan there's so many, there's so many.

Jen: 47:32

Uh, there's, there's danny.

Ali: 47:33

Make account for danny yeah, I think raven, what's her name? She moved. She's a trainer. There's so many like I just, yeah, I love it. It's. It's encouraging to see them moving and prove that we can move and we all have like all right, but we also have other chronic illnesses too, so it's nice to see that you can keep on moving no matter what.

Jen: 47:52

Exactly, and I don't. I think. Well, actually this episode might come out when it's still November, but this month is Movember, if you haven't seen it.

Ali: 48:01

Oh, yes, I have. I love that. I love what you guys are doing. My gosh she does it every year.

Jen: 48:06

It's so much fun, but I love it because. I know that if I get on there, I'm going to feel encouraged by all of you. Yeah.

Ali: 48:12

Yeah, and you can move in a fun way. It doesn't have to be CrossFit Like I.

Jen: 48:16

You know I could dance in this chair right now and that's Movember, like I love it, I love yoga and Pilates, but that doesn't mean I'm always going to be able to do all of the moves, yes, and so I love that. If there is something that I'm struggling with, I can reach out to any one of you, and you guys are going to say, hey, why don't you try it this way?

Ali: 48:34

The modifications. They're so important.

Jen: 48:36

Absolutely. It's been a game changer for me. It's helped me get active again. I love it yeah.

Ali: 48:44

I know, and that's the thing is like people get diagnosed and they think, oh, I'm not going to be able to do the things I did before and you might not, but you can in a modified way, and you can mourn your past self. That's totally normal, totally valid. But then pick yourself back up, modify it and slay baby. Just put on some good tunes, yeah, and we can keep moving. We have to keep moving. It's like we need to do it. It's important.

Jen: 49:06

We I can't say it enough that we need to lubricate those joints. We need to keep moving, because if we don't move we're going to lock up even more. We're going to hurt even more, and it's not a fun thing.

Ali: 49:15

We've all probably done it at least once. Yeah, oh yeah, like just sitting at a desk all day and then standing up. My knees are not happy, so we do have to oil those joints, it's so important.

Jen: 49:34

When I was first diagnosed, I was convinced that I was going to end up in a wheelchair and that I was going to look like a 90 year old person. Yeah, yeah, same, because I think that's what you know has always been portrayed as it's it's an elderly thing and at the time, I was wanting to join the roller derby team. I've always loved roller skating, roller, derby all that Love it, yeah.

Jen: 49:44

And my husband looked at me and he was like, yeah, just what we need Injuries on top of chronic illness. Yeah, he's like, I don't need you breaking an ankle.

Ali: 49:52

No, no, you're already going through enough. You don't need to know.

Jen: 49:55

Yeah, and so you know, yes, that that crushed my dream. But just like you and everyone else, we can find a new dream or we can adapt. You know, it could be hiking, it could be something else bike riding.

Ali: 50:07

You can still roller skate, just don't have a other lady pushing you down while you're doing it.

Jen: 50:12

Exactly, I actually have roller skates and when I still had an office job, there was only two of us in the office and so on my breaks I would do a loop around the building. I love that and my roller skates, that's fun.

Ali: 50:25

Oh my God, I got them at COVID because everybody was, and the minute I put them on, jen, I busted my ass, I fell. The minute I put them on, I fell backwards. I took those babies right off and sent them back. I was like no, we're not doing this. No, no, wow.

Jen: 50:39

I'm looking at the time and I'm like, oh, we could talk for hours. I'm going to try not to do any more rabbit trails and I'm going to try to finish asking you these questions. Okay, Okay, we got. Becoming a certified personal trainer is such an empowering accomplishment. What message do you hope to share with others who may feel limited by their chronic illness?

Ali: 50:57

That fitness does not have to be like CrossFit. It doesn't have to be you have to follow a whole program. It can look messy, and that's okay, and by messy I mean maybe Monday you went for a walk. Maybe Tuesday you danced to the whole Beyonce album. Maybe Wednesday you went to a dance class. Maybe Thursday you jumped in the pool.

Ali: 51:18

It can look messy, as long as you start moving and making it consistent. When you start making it consistent, then you're going to fall in love with it. It's going to be something like you have to do every day, like a consistent hobby that we, a consistent hobby that we all try to, or habit, I should say a consistent habit we all do, like brushing our teeth. It's going to feel normal to you. That's when you can start maybe doing a more routine when it comes to fitness. Maybe you follow a program, maybe you join a fitness class, but just moving in a way that you can, even if it's modified like crazy and finding a workout that works for you, like if you did a workout with me, I would show you the modifications. But if you're following something like on YouTube and you can't do what they're doing, don't quit. Just keep moving, no matter what that looks like, just keep moving and stay consistent with it. Please, please, please, and it's going to be okay. You don't have to do the program the way it is Like today, I did a workout class with a friend.

Ali: 52:13

Everybody used weights and I didn't, because I'm having a harder day, and that's okay. I got moving. I should be proud of myself, just even if my calories were like a hundred, compared to like other days when I do 400, who cares? I got up and I oiled those joints. So that is what I'm going to say is to stay consistent, even if it looks messy. It does not have to look perfect because you're chronically ill and moving. That's already amazing in itself. You don't have to do a program and follow it to the T, like absolutely not get up and dance, get up and walk, get up and stretch, get up and groove to the beats. I don't know, do something. But yeah, just get moving, baby.

Jen: 52:47

I could not agree with you anymore. How has fitness helped you cope with your arthritis, both physically and mentally?

Ali: 52:53

Well, physically, of course, it helps with the inflammation, it helps with morning stiffness, it overall just helps with strengthening, strengthening the muscles surrounding the joint. So, if you think about it, if you strengthen that muscle surrounding the joint so say, my arthritis is really bad in my knee which it is strengthening that quad, the hamstrings, the calf it's going to give you support, it's going to give you the support that you need, and so that's really important. So, physically, strengthening a morning stiffness. And then mentally, the reason I actually started working out had nothing to do with RA. It had to do with struggling from anxiety. We lost a family member and I didn't know how to cope with it.

Ali: 53:26

So I started working out and it just mentally helped me so much. It relieves anxiety, it relieves depression, it creates endorphins that we need to get happy, like if you need those that endorphin boost, a workout will get you that endorphin boost. So it's so important mentally. So if you're listening to this and you're not chronically ill, it's so important for you as well. Of course, and again, it doesn't have to be a CrossFit, it doesn't have to be a full out workout with weights. It could be a dance, like literally it could be a dance, so yeah. Or cleaning your house like, get up and clean the house. That's a workout in itself. Let me tell you what you're squatting to pick up that vacuum, like it's a lot. So yeah, Put on your favorite tunes and get moving.

Jen: 54:06

I just did some deep cleaning the other day to start Christmas decorating.

Ali: 54:11

I can't believe I'm saying this, but my husband wanted.

Jen: 54:13

Christmas decorations up and I'm telling you all that dusting and getting down with the base and everything. I, I was just done. After that I was like oh my gosh.

Ali: 54:23

Yup, and you can make it a workout. If you're going to dust, do like three squats and then dust, three squats and dust, you know like, just do it with proper form and that's a workout. Blast your favorite music, dance around as you do it, have a lot of fun.

Jen: 54:34

Exactly, that's a workout. So, yeah, yeah, you're bringing up a really good point too, because strengthening those muscles around the joint, you're protecting your joint by doing that, yep, and it is so crucial I can't even, I can't even express how crucial that is, yep.

Ali: 54:50

And it is so crucial I can't even I can't even express how crucial that is. Yep, doctors will tell it to you and you'll wonder how the hell can I do it? But you can use resistance Doesn't have to be crazy weights. You can use bands. You can use fabric weights. You know like you can make it work without heavy weights? Yeah, your own weight, body weight. If you chopped your leg off and put it on a scale, it weighs something. So I mean, if you just pull out your arms right now and do a little arm circles, it hurts those shoulders like crazy. So yeah, you can use absolutely just body weight.

Jen: 55:14

Such a good point. What advice do you have for those in our community who want to start moving their bodies but they feel hesitant because of the pain and the limitations they have?

Ali: 55:25

Absolutely. I would get a chronic illness accountability buddy. So get somebody else, a friend that also wants to get moving as well. I always recommend if you want to get moving and you keep putting it off, I wouldn't do it alone. And by that I mean, of course, get your accountability buddy. But I would sign up for a class or pay for something.

Ali: 55:46

If you pay for something, you have to show up to it. Now, if you don't pay for something, yeah, if you don't pay for something, you can easily throw it off. But if you pay for something, baby, you got to go. So, whether it's and I don't even mean like paying for a subscription, I mean, I guess, if you have the accountability to show up and do that video, but if you can go in person, that would be even better, because you paid and you have to go. Or if you pay for a trainer, you have to show up on Zoom. So I would do something and pay for it. And he mentions this in the book the Atomic Habits, the author, where if you pay for something, you're more likely to do something.

Ali: 56:19

So if you have a hard time staying accountable, I do recommend, at least the first month, pay for something.

Ali: 56:23

And if you don't have it, pay for something cheaper. My fitness app is only $15 a month, but I would for something cheaper, like my fitness app is only $15 a month. But I would, if you can, try to go in person or get a trainer or something just to get you started, because once you make it a habit, then maybe you're more likely to stick with it after. So get your accountability buddy that also has a chronic illness, because you will motivate one another and also remember it's okay to modify. That's why I think having a trainer would be best, because you have to show up, you pay for it and we'll show you the modifications so that when you do take a class in the future you'll know how to modify. So usually I would when I worked at a gym I'm on zoom now, but usually I would do a couple of sessions with someone who wants to do a group class but is nervous to go, because I would show them all the modifications that they can do so that when they go to the group class they're prepared.

Jen: 57:12

So that is my advice. It's great advice, actually. I'll tell you for me, the in-person. I needed that for a long time and sometimes if you're embarrassed about being seen. My favorite thing was when we joined Gold's Gym. I went to the movie room, the movie room. Yes, they're playing movies. They're playing movies while you work out. I love that. Yes, they would have treadmills, bikes, all the things set up in their elliptical. I would go in there and watch a movie while I went back and forth on the different machines.

Ali: 57:39

I love that. That's good. It keeps you on there to watch. You could stay on there the whole movie Wow.

Jen: 57:43

Absolutely. It worked really well for me because I was self-conscious about being seen and you can kind of just disappear into the room and get your thing done.

Ali: 57:52

I love that. Yeah, honestly I was just talking about this earlier with a friend I get nervous going to a gym and I'm a trainer. Like for some reason it just feels like all eyes are on you and they're not nobody cares because they're thinking about themselves, but like it's just, it's really hard. I usually just go into a corner and do my own thing, but it's, it is hard. So I want the listeners to just walk into that gym and own that place. Walk in like you own it. Nobody's going to mess with you. They're going to be jealous. They're going to be like, damn, that person like owns this place. Okay, like the confidence you own it.

Jen: 58:21

You know how to use all the machines. You are just confident in your abilities and why you're there Exactly If you don't know how to use the machine.

Ali: 58:28

They have pictures on the machines and just put your like AirPods in and pretend you're stretching but really you're reading the instructions.

Jen: 58:39

Worst case scenario Google a video where you can see someone doing it.

Ali: 58:41

Sometimes that'll help, yeah, like people are on their phones all the time, on machines. So if you need to Google how to do it, fuck it, do it and then just act like you're stretching if you're nervous. But honestly, who cares?

Jen: 58:51

Exactly, because everyone else is probably feeling the same way you are anyway. Exactly, they are All right. Lastly, what is next up for you, allie? Are there any upcoming projects or goals you're excited about and you want to share with listeners?

Ali: 59:04

Yeah, so I haven't really talked about it yet but a friend of mine who's also a trainer, we're going to be working on another fitness app. So I do have a fitness app, yes, and it's specifically for spoonies. But we're also going to be working on another fitness app that's going to be more hands-on. So, like the fitness app I have that's already created is there's videos where we can do follow alongs and you can find it on my website and there are I've programmed workouts for you to do. So this other app that we're doing is going to be a bit more personal, like you're working a little bit more with me, so we're really excited and it's going to be based on like moods. So it's going to be like an angry workout, or I have my period workout, or a sweatpants workout, like I just don't want to get out of my sweatpants or I don't want to get off the floor, so it's going to be like a fun mood type workout. So we start filming this week and I'm really excited.

Jen: 59:53

Oh, I love this. Yes, I can't wait yeah.

Ali: 59:57

Yeah, so it should be a lot of fun. So that's my next thing is working on this uh fitness app as well. So, yeah, I'm excited.

Jen: 1:00:03

You're amazing. I'm so proud of you. I'm proud to know you Thank you too.

Ali: 1:00:07

I'm proud to know you and be friends with you again. We could talk for hours. I will be back.

Jen: 1:00:11

Yes, we will have her back, for sure. I will make sure that we have all of the important links to you in the show notes and all right, yes, we did it, we did it. Thank you so much. Thank you All right, my spoonie sisters, until next time, don't forget your spoon.