this is disabled girls who lift. We are reclaiming what's rightfully ours. One podcast at a time. It's mary Beth Chloe and Marcia bringing you the thoughts and unpopular topics to get you out of that. A bliss comfort zone. Mm hmm. Hello! Hello guys, welcome to yet another episode of disabled girls who Yes, we still lift. So this is Marcy from south florida. We've got a wonderful guest coming and we're gonna talk about some different awareness is a couple of different things you might have never heard about. I'm Mary Beth Y'all I am over here in northern California. It is 95°, but I'm not complaining because it's not like Florida. I am so excited to bring on angel Sky. She has been such an amazing, amazing woman in our community. She is an animal lover. She's got some theater in her background and artists in all senses. Um and of course important right now, um mental illness advocate.

So welcome. Thank you for joining us. Thank you for having me. I'm Southern New Hampshire. It actually was snowing this morning like pouring giant flakes of snow. So I am jealous of the warmness that you guys have, yikes. What is the snow? I don't even know what that means. Um so I do want to. So obviously we are disabled girls who lift and not all disabilities are visible, but you do have a very visible one. But something that people are still, you know, it's not a picturesque person in a wheelchair and they're like, alright, great. I can understand what that means. Like you've got something else going on. So can you tell us about the syndrome you actually have and is that something from birth? Did you have to go through surgeries your life or do you have you know all the complications what's going on? I actually I am third generation having holt Oram syndrome.

Um It is genetic. It's affected from the T. B. X. Five gene in your D. N. A. And the doctors at least the last that I had done all the research and everything. It's supposed to be 5050 of whether you pass it on to your kids or not. My grandma was born with it. She only had one kid. My dad had it. My dad only had one kid. Me I have it I yet to have had kids yet so I don't know if it's going to actually pass or not but it is genetic. Um So I actually health wise got the lucky end. Um I haven't had to have any surgeries because of it. I had tubes put in my ears twice when I was a kid but that's completely unrelated. I still have your infections a lot. It's it's bad but um my dad actually had to have a pacemaker put in when he was 19. Whereas the hole that I was born with.

I always forget if it's A. S. D. Or VSD. He had one I had the other whether atrial or ventricle. Um I was basically born with only three chambers of my heart. Like that hole was so big an entire chamber was missing. So it grew over time which is again part of the lucky nous that I have. Um So my heart is fully there now. It's perfectly fine. I don't have murmurs anymore. I barely have symptoms of asthma anymore but I got tiny little arms so I got the short end of that part. Yeah, I'm happy to hear that you're otherwise feeling and breathing. Okay. Because especially at a time right now that's kind of like oh kind of an anxiety trigger for sure, wondering growing up, how were you, you know, supported by family since you're third generation, Did everybody kind of prepare you for the world or were they sheltering you or my parents basically.

Not in so far as to say like tough love but they didn't give me any shortcuts. Um They knew that the only way that I would be able to lead a normal productive life is to learn to do things on my own. So um I actually started dancing when I was three, like doing ballet, tap jazz all of that, which started my fitness obsession. Um And I was one of the best ones in my class for a while. I was one of the best ones um Like I had the best balance the doctors, you know when my mom was pregnant with me, they basically were like, hey, so her limbs aren't growing. we suggest you have an abortion and my mom was like, fuck you, I'm going to a different doctor or no, okay, we're going to a different doctor.

Um, so I wasn't supposed to even be able to stand on my own, let alone walk, run dance, play soccer, you know, spin with my leg above my head. Like, did you, so did you grow up in new Hampshire? Did you start somewhere else? I grew up in north Carolina. I have only been in new Hampshire in the past two years. Okay, so, I mean, I don't share that the way that your childhood experiences go because I mean number one, I don't have a physical disability. Number two, it didn't come on till like, you know now. Um, so you guys have a lot more stories about how you don't want to hold hands or stories where your teachers are parading you around. Do you have a go to, this is my childhood dammit story. Like, what, what's your, what's your go to cringe? I quit dancing when I was 12 because I was having a harder time getting a triple pure wet on point because I didn't have, you know the arm weight to whip around each time I went to turn and a couple of the girls in my class who were jealous because I got into pre point before them decided to bully me and you know, all these things, all these things like I just, I was letting them bounce off, bounce off, they tried to make fun of my weight and I'm like I have rock hard abs at 12 years old Yeah, my legs are thicker but they're all muscle, like I do everything with my legs, I'm constantly lifting them, so yeah, I got monster quads, you're not going to affect me by talking about my weight, but I kept falling and falling, trying to do a triple pirouette and they're like, oh I guess your arms aren't up to ballet ou bitch.

So I went home crying and never went back, geez, do you still feel like that girl sometimes? And I wonder for you mary, but do you still feel like that girl sometimes? Are you still that person? I mean, I wasn't like, outwardly, I wasn't outwardly made fun of, I think it was always behind the scenes, you can hear the little snickers, you can hear like of course, just I see the trends and the difference between dance and sport, the fact that like, you know, I was playing basketball in the fourth grade with one hand, kind of like drew the attention in a good way um but just dance beats you the hell up and of course it always gets to the, wait, what the hell, especially the ones they are mean? Yeah, Christie said the same kind of a thing um and I know you have listened to the episodes for people that haven't, she was also a dancer and she also stopped because of bullying because she gained weight from new medications like you know, life saving, great, I won't die now medications and these people in her dancing or like you're fat now, you shouldn't be here.

I was gonna say I um I actually started again when I went to college um because I was like, you know what, it's now or never, it's free classes. It's included in the tuition, my tuition is being paid for by um vocational rehabilitation and loans and ship so I might as well take dance classes again and see if I still have it. And I got back into it pretty quickly. But um a whole long story short, I should have been a dance major, lots of drama in the theater department, I should have been in the dance department. But um something about the university that I went to, I went to MEREDITH College in Raleigh and um that dance department was amazing. We had, you know, stick thin tall, you know, beautiful model, body women who were majors there, we had, you know, short little five to kind of overweight, don't have arms in all the dance classes and performances and everything.

We had, you know, it's all overweight women, like it was just, we had any body type in the dance department and everybody was family. Everybody was treated like family, like you couldn't get a step right away. Okay, well you know, which parts are you having issues with, you know, what do you think you actually like have down so that we can try to narrow down the issue so that you can do this. The college was a lot better than 12 years old, Okay. I mean before we get into theater and I know there's a lot of heavy shit in theater and Hollywood and just that field, but um back to your childhood, I know I was kind of encouraged slash force to use prosthetics or at least look into prosthetics. That wasn't a thing for you. They, I had like, my parents had looked into it slightly, but as far as the people that we were able to go to um they were saying anything that would actually be useful for her, we're most likely going to have to chop the fingers that she does have off to make it into a stump to be able to fit the prosthetics better.

And my parents were like, well she has working digits, we don't want to take that away from her for something that may or may not work. Exactly. That's not a great idea. And did anybody ever try to suggest limb lengthening surgeries? Yes. Um my bone in my arms, I'm trying to think of the age, I was when it finally like turned into bone and fully hardened? Um for a while there it was just cartilage so they couldn't do it. Oh that's interesting. Yeah, limb lengthening is the whole thing, It is a wild and crazy thing. Um And I do also feel like from, I think that it's interesting that you're a third generation in your experience because I'm sure your dad didn't have that experience and I'm sure definitely your grandma didn't have that experience because for the most part when people have kids that number one don't look like them and number two don't move like them. Like the only thing they could think of is like okay how do I make her normal and then they don't know anything in between.

Like I have a girl now for therapy and the poor girl has, that's how she was born. She has arthur Grippo sis so you know like her wrist is backward, her arms are stuck straight, her legs stuck this way. Um but she's she's 100% with it, like honestly she's a genius and she scoots on her little booty and she gets around, she does what she wants to do, but like last week they bought her a walker, I'm like what what do you, she can't, she can't do that, you're not really helping her, what's going on guys, I obviously never crawled. Yeah, I rolled everywhere. Oh you didn't do the butt scoop? I did do the butt scooch sometimes, but it was faster just to roll my mom, she would always tell me like yeah, you know, I figured since you couldn't crawl, it'd be safe. I just set you down, step away for a second. I turned back around and you're gone. Like she lost me so many times under the couch because I would roll under the couch.

Those couches, the fabric flap on the front. Okay. Is this sideways or forward? Rolling. That sounds like fun. That sounds more fun than my child. Like going up and downstairs. I would do like the butt scooch for that because I didn't have the balance yet to go up and down stairs without feeling like I was going to fall. So I just sat and, and so, so cute, cute. And see another thing too is like this whole developing technology and all these amazing surgeries that they can do for us and how they can just fix all our problems and make us look normal. It's always obviously just for physical appearance, but they're asking me or I'm asking myself like, oh, if somebody, you know donated their foot to you as an organ, would you attach it to your hand if we found the right skin tone? And I'm like, that will do nothing for me and I will never let go of what I've already grown to, you know, love and Adapt with for 28 years.

Yeah. It's like we've already had so much practice and just like its nature to us to be able to do certain things a certain way. Like if you suddenly, you know, Oh, it could help it be easier. But for a long time. It's not until you get used to it. Yeah. It does not sound worth it at all. Or just feeling sorry for us. Like the way they feel sorry for three legged dogs, even though they're having the time of their lives, you know? We've grown to adapt this way. Leave us the alone. Yeah. Good here, it's fine. Don't worry about it. So, you got into theater in college or high school, It started in church when I was a child. Um, I actually, I always would make a joke that theater was meant to be my calling and everything because the very first thing I ever memorized was the Lord's Prayer kind of like in a monologue kind of way before I could read my grandma would be like, do you know it yet, grandma, I can't read do you know it yet, nana, I can't read, how am I supposed to memorize it if I can't read it.

I'm too. But um, doing that and then like little church plays and everything. And then my sixth grade year, we did into the Woods Jr version. So the first act of it and it was awesome and I loved it. And then I was obsessed with theater from there in um, in high school, there was only one year that I wasn't in the show at all, let alone a lead. So then going to college that I was in one show with the theater department, that's why two shows, one of them, I was a sound person backstage but technically my voice was heard, so I acted in it, but I was in one show and it was The Tempest and I was a spirit so I was allowed to have differences. So what changed wasn't you? It was the environment, yep, just a lot of people going in with the same background as me of like I'm always lead, I'm talented enough, I am always the lead and then not having the maturity to be like, oh no, you are better for this role, make us all look better.

You know, there's just the fighting and again, no pun intended drama, drama and drama, but how does that work? I don't, I'm not really familiar with the logistics of it. I mean how does that work? This was a part of your class or that was something you did on the side like isn't somebody else in charge of it or is that person kind of in on the bullshit to its its own whole world kind of governed in a weird fucked up. You need to fit this perfect physical way for the character kind of thing. It wasn't or at least most of the shows that we did and everything, there wasn't ever really an emphasis on, oh you're not the right weight, but as far as um it really was more so just me that I saw, I never got parts, whereas everybody else got different parts and everything because like you know being in north Carolina, there's a lot of diversity.

We had so many different cultures, races and everything and everybody just kept getting put everywhere. I was a spirit once, wow. Yeah, because I was just gonna say, I mean for people who can't relate to us and how we don't fit the mold unless that actor or sorry, that character has a disability or is in a wheelchair or has some in one way or another broken their arm in a part or in a scene, you know like chuck you first of all, but that's the same for racialized characters who are like, oh wait no you don't fit this story of Shakespeare because that person was white and like no that person wasn't more. What are you talking about? This is your idea, this is his story, but that's not how it actually was. In reality. These are like the people that get mad. That idris alba was like one of the fucking guys in the marvel movies, you know that guy is not supposed to be black.

Um first of all he's sucking mythical, he could be whatever, what are you talking about? We did have a pretty good excuse for like, you know, color blind casting and all of that because it was an all women's university. We a lot of shows did gender blind casting as well. Um that was not an issue of like, well we're already bending all of these rules and I was just sitting there like, well why can't I be a character in it? Right? Like behind any of those other things. Like you're bending the rules for this is the literal description of the character, their background, their culture, like everything that the writer and vision for them. We're breaking all of that, which is completely fine. Why can't they also just not have arms? It's because they make these assumptions And same with hiring managers, right? We hate to check that box whether or not we're disabled because they're going to assume that they have to make all these adaptations for us or there are things that we can't do, like lift heavy boxes or do whatever the hell that a quote unquote average worker or actor can do.

You know, they just make these assumptions based on how you look and all it takes is for them to like talk to us and ask us what it is that we need to make it a lot more accessible or just And so it really sucks that like either in dance or in theater, you just have to find that right environment. And I'm not going to say that they're out there, but you know, one in 10 or one in 20 theater companies are a lot more accepting in people of color, women, people with disabilities. I mean that's anything really because people, people have to say that, you know, power lifting is a great community or strong man is a great community, but every gym is not going to be a safe space. Honestly, some gyms are full of douche bags, some gyms are full of like cultists and you have to drink their kool aid and unfortunately we just added like another level of will I be accepted for this? Also whenever we're going into these spaces and that's literally just our reality, there's nothing we can do but exist and hope that the other people realize like, alright, I'm creating all of these like barriers to making somebody feel happy here.

Maybe I should change if that doesn't happen, I don't think anything's gonna change. And angel, did you ever feel safe enough to even say anything or were you kind of just stuck? I was kind of just stuck at that point. Um I said going back to the whole dance department thing, they were kind of my escape is I was supposed to officially have a minor in dance but credit bullshit issues. So um, the way that the dance department for me specifically, uh, we had a dance works show every spring semester and it was all student choreographed rather than faculty or guests staff and everything. Um, and it was always awesome when I would get into any of those dances and of course it was more and more each year that I was there as I was getting my skill back up the um, it was awesome working with, you know, my peers and everything and they were always like, I love working with you because one you get off that floor quicker than anybody else and to like, it's broadening my horizons of how I think about choreography and how to modify choreography for different people, whether they don't have arms, whether their knee is completely jacked, like whatever is going on, if we need to modify it at all.

I now have the skill set to think outside of that box and be able to do so without just freaking out because the first few times that I would work with one of the choreographer's, they'd be like, can you do this? Like, I don't know, but I'll try if I can't, I'll figure something out. We'll make it look somewhat like everybody else, like, But that's step one right, asking those questions rather than assuming you can't do this and that is what we have to make the choice for us. Yeah. Now, don't tell me to do a handstand. That's not gonna happen. There's no like no modification that I can do that. But as far as, you know, like shoulder rolls, you know, getting up off the floor really quick, just running and sliding and getting back up, you know, all these different jumps and turns and everything like I'll figure something out. Yeah, you're a pro at rolling little do they know you were made for this.

So once you've finished, are you working in dance or theater? Not even close. No, that's a real american dream right there. Get a degree for no reason, dollars in student loans for nothing. I actually, I just got a permanent position at the insurance company that I've been temping at for the past six months. So I'm really excited about that because it's like A $6 pay raise plus benefits and paid time off that I wasn't getting as attempt. Congratulations. That's huge. I'm just like, I have a career now, which growing up, I never thought it would happen. I thought, you know, like, oh, I'll be lucky you know, if I'm working in a single store for a year, like I have a career, I'm going to have the money to get back into dance and everything and and is the job starting now or after Shelton in places over?

I've been working from home for the past couple of months. So um monday is my first official day as a full time employee which I'll still be working from home. So I've been fortunate switching if they don't have to, which is actually somewhat comforting because at least not everybody is being really dumb about this. Yeah, it's really nice being the health insurance company because they're like, we're not bringing you in unless we feel that it is safe to bring everybody back. Like we are keeping you guys home as long as you can stand to be home because we don't want everybody just suddenly rushing back to the office and then we all just have to move everybody back home again anyways because people are getting sick. So even my company is doing it in increments waves of bringing people back in. Exactly. That makes way more sense. Oh gosh.

Uh and in terms of you said you have to get money to get into dance again. How? So you haven't been dancing on your own? Oh really nice having the structure, especially like, you know, I do a lot of ballet stuff. Like I want to get back into ballet. But I also do like contemporary and lyrical and all of that is just I live in a studio apartment. I have uh about naked in front of me to the other wall, There's no room, there's no room to dance. Oh, a C uh So have you found, because I know that for a lot of us that lift weights or we have like a very specific sports, like I was just getting into throwing and I can't do that. Are you finding yourself lacking without it? Especially now that we have extra stress and like this whole last pandemic. I have been struggling really hard the past seven years since I graduated from college not doing dance again because like this time, you know, quitting, it wasn't my choice.

Like I just haven't been able to take classes or have a space to do so um perfectly soon. But now we, me and my boyfriend, we're actually going to the gym because I also love the gym. That's how I got into you guys uh seeing all the gym stuff. But um, I, we started getting back into that and then everything closed and like I was only working out again for two months. Oh no, I try to be motivated to, you know, oh, we'll just do some sit ups and some squats. But then like I have my cat who, I don't even know if the recording could hear her howling at me a few minutes ago. My dog who is up on the bed, like the snake doesn't really get in the way, but always like you're sitting on the floor, give me attention. You must be here for me. Yeah.

It's really nice and picturesque that people post a lot of stuff that we're doing and at home workouts. I mean I have actual gym so I'm still doing regular last workouts, but if I didn't, I would not be doing calisthenics and like I'm sorry, I wouldn't be doing it. I wouldn't do it. I'm gonna be, I would not be doing it. No, I'm not gonna do hit workouts. I wouldn't be doing it because that's not, that's not what did it for me, You know, like the heavy ass weights is what did it? Yeah, the machine next to you and you're squatting with the bar with more than them and you have nothing to hold onto it with exactly resting on your shoulders and you're like, what's up man? Well, you know what's so funny is that there are videos of like thinspiration people doing squatting without holding on and people are like, wow amazing and I'm just like, is it, if you don't have to do it, don't do it, it sucks and it hurts.

Yeah, and it's dangerous, like, oh man, that thinks so you were just two months. So did you have a coach or you guys just went in off something on the internet, you just free balled it, you just went around lifting whatever you wanted with me and my background and physical activity and everything and he um is a Marine Corps veteran, like we both already know what we need to do for our own personal selves to get in shape and stay in shape and all of that. So for us it's just not necessary to have a coach and I don't really have any goals with going besides just being like, yeah, I'm awesome, better doing this and I'm happier, I'm getting stressed out, like I'm strong. Yeah, that's it, I mean and I feel that too because there are a lot of people that will be like, oh you didn't lift that out of meat doesn't count.

Like, oh, you're not training to compete. Doesn't count doing it for myself. That counts even more. Yeah. Don't worry about me. Don't worry about what I'm doing for this community. It really is a great way to get started because a lot of us never thought we could do these things working balance a bar on your shoulders. Holy crap. I used to dead lift with one arm. I thought that was the only way I could do things in power lifting and I found other adaptations. So this community has just been so awesome and seeing how others are adapting what tools are using, definitely. But did you, didn't you take a while before you got comfortable with benching also? Was that you that said that mary beth like you were scared to the bench. Oh yeah. Yeah. I had never thought I could. I never thought I could uh push anything up and balance it. But again, we've lived with these limbs for all our lives. We know how to do things and make it safe for us.

How about you? Angel? What what workouts are you doing in the gym? Where are you? Where are you going to do again in the gym? Here we go. We're gonna speak every day. That's, that's my motto leg day. Every day because you know, there's nothing else. Mm. Mm. Mm. Mm. Mm. Mm So have you ever used any of the straps or um you know like adaptive equipment that people are trying out not as far as the gym goes. Um I mean going back to the dance thing when I was in college, it was a lot easier instead of having the stationary horizontal bar for ballet warm up and everything. Um My professor actually got one of the suction cup shower handles. Oh and put it on one of the window walls in the studio. So that way it was vertical. And as I was you know playing down, I could still hold the bar and have that balance there. Yeah. You just got to figure it out. Yeah. There's so many when I see everybody lifting that they're like straps and contraptions and mary beth with their hook.

Yeah like we look like the terminator but like yo we should done there's nothing but at least for me that I've heard of or seen that I think would be beneficial for me not having elbows. Um It's really one of those like it's such limited mobility in my shoulders and everything and for my arms that I wouldn't be benefiting by trying to work out my shoulders and everything that way. I basically just grab one of the um giant you know round waits for the bench press bar and I just grabbed that and do some shoulder shrugs. Yeah but that's it like other than that leg day every day and I do want to point out. And I mean everybody is not everybody is the same, but a lot of people that message us like we're here. You know, just people and we'll talk to you and then next thing you know, hey maybe like Angel, you'll be on the show, we'll have a little chat like out.

It's cool. So that like R. D. M. S are always open and our emails always open. People are always welcome to write a blog to join us when we're doing these live things to post like anything. Because at the point is it's not we didn't make this just so we could be mary beth Marcy and Chloe's face everywhere because then it wouldn't be. Although we are cute. I mean but still it's disabled girls who live like all of us. So we're up at all hours of the day, we're in different times again. So if you've got shipped going on at one a.m. I'm awake. Exactly. I do want to thank you for reaching out and just you know, because not everybody can do that. We're sucking strangers. You got on your phone and you were like, you know, I'm gonna tell these people how I feel. I am very opinionated. This is my opinion about what you guys were talking about. Yeah, I appreciate that because that's literally the point because we're we exist, we're here.

You're here. You're you're thriving. Nobody thought you were gonna do implies let alone get a gym membership fucking thriving, it's amazing. So really thank you. I'm so happy that you actually wrote that message. I am too. I honestly when you guys offered for me to come on the podcast, I started bouncing around and I was like just holding my phone like squealing, my boyfriend's like what are you doing? And I went and I showed him the message and I like jumped one more time and we have a cast iron bed frame, busted blood vessels and a really bad that story gets excited everyone. No, but seriously Angel, like that's all it takes when I started this, what's it 34 years ago now, I thought Chloe was the only one.

I thought we were the only two with upper limb differences and then we discovered Lucky Fin project and then we discovered all these amazing humans who are athletes and dancers and just doing everything, doing the most not doing too much. But I actually think Lucky Fin is how I found this awesome like through the Lucky Fin project. I don't know if you know um stump kitchen or if you follow her on youtube. Like she's she's been one of our awesome friends for a while too and I know she's a she's a counselor there. Yeah, yeah, Like nine months already. Yeah, go in that community young, you know, like we didn't have that. Yeah and this next generation, I mean not everybody's on this amazing work path, but for those of us that are like this next generation is going to be like, pop it man, it's gonna be great to be confident.

I know we're going to use our voices. We're seeing ourselves in the NFL on. Yes, we're gonna ask each other our pronouns, we're not going to push anybody's chair without asking. Yeah. Taco Bell sauce packets for other people. That's my thing where I'm okay. Like I'm not so prideful that if somebody is like, oh hey, do you need help and I actually need help? Or it's like, yeah, actually, you know, hey, you know whatever, but it's when people come up and they're like, oh let me help you with that. Um Was I even struggling? Was I looking like I was struggling? Like genuine question, did I look like I was struggling and I was like, no, just let me help you. Let me help you. I'm like, I got it back off. Like I am not incapable. Let me grab my freaking sauce packets piece this is Taco Bell.

This is not a fucking top secret laboratory. I'm trying to find the straws and put it in my cups and I'm like, oh come on, my boyfriend can touch my straw, but don't touch my straw. I don't know where your hands have been, but you don't force help on people if they don't need it, that's not polite, extremely frustrating and rude. Yeah, once you force that help on people like and just implant yourself into their life. Like that's that's the making that goes back to you, made the choice for them. You decided they can't do it. You didn't ask. I wouldn't make a term for this. I'm going to call it aggressive, able bodied savior, Get the funk out. Yes. Yeah. Yeah. Back up here. So a big thing I've heard too and I think that question came up and we were on live on Youtube for partners of people with disabilities has has your partner like found his ways and stopped asking you if you needed help.

I mean we've been together for four years and nine months. So I'm basically five years who's Counting right? nine months and four days and counting. But um well no, I was thinking I'm like is it closer to five years or closer to 4.5 years and like it's right between so um it's gotten to the point where he knows when I need help with something, like just automatically of okay, well I'm gonna go ahead and do this before you even ask me about it. And then there are certain things where I go and I asked him for help. Like sometimes when I get out of the shower with brushing my hair if like my hips or my knees or my back hurts really bad. I'll just like kind of walk up and hand him the brush like BB starts brushing my hair and everything. Um you know, and there are some things where he actually will just sit there and watch me struggle for a minute because he's like, this is something you usually do yourself, I'm not going to step on your toes about it, but you are being stubborn and I'm gonna let you be stubborn.

And then finally I look and I'm like, why are you just watching me struggle? And he was like, you didn't ask, you're a grown woman. You know, it's, I'm the exact same. I'm so much lazier when my partners around, but it's like ship that I can do, like get up and turn off the light, yep, that's every, every relationship. Do you find it's, it's pretty equal because everybody loves to say that, oh, there's such a burden for them. Is he walking on eggshells? Is he like dying every day of so much of this burden he's carrying? Like he definitely is a lot busier in day to day life than I am because whole long story, I do have the ability to drive, but I don't have a license, so I'm not able to go run any errands for us, like go get the rent, check, go grocery shopping that I would need help with anyways, but as far as you know, just like, oh, go to the gas station, go grab milk or dog food or whatever, like I used to work in Petco, I can pick up dog food, but um all of those things I'm not able to help him out with, So on top of his 50 to 60 hour work weeks, He also has to run me around to the things that I need to do, run all of the errands that we need, we both need done.

Like he's doing the constant driving and everything and he works 45 minutes away from where we live, so it's already two hours on top of what he's working, that he's just in the car, going, going, going. So I feel bad in that aspect, but he doesn't blame me for it. He does like, he's never holding it over my head of like, well I really wish that, you know, you could go do this or that or whatever. The only time that it ever kind of becomes an issue is I get in my own mind in the apartment because I do clean a lot of it, But there are some things that I can't do without help, like, you know, if we accidentally put too much trash in the trash can, I can't lift that bag out, it's too tall, it's not too heavy, but it's too tall. I'm five two, you know, so like if he forgets to pull the trash bag out for me because I can run it out, I can put it in the dumpster, um you know, doing the dishes because our kitchen is a poor pathetic excuse of a kitchen.

It's like six inches of counter on either side of a sink with a tiny stove that the oven can't even fit a frozen pizza in it, that's our kitchen, so I can do dishes, but I usually need to sit on the counter and do them with my feet, I can't do that here. So if I'm running out of utensils and like, baby, why don't you do the dishes? And he was like, I'm never home. So that's where it becomes an issue is when I'm letting my anxiety and everything get ahold of me and I'm just like, this needs to be done and this needs to be done. And he's like, you need to chill. Yeah, but it's all like that perception of control because it's something that you're used to controlling and now you can and other things are out of control and and then you just like keep ramping up and you just like ramping. So how do you actually bring yourself down? Is it, is it always him talking you like snapping you out of it or do you have any coping methods that you find that have helped you there?

Um a lot of the time it is him snapping me out of it of just like baby breathe breed and I'm like, don't tell me to calm down. And he's like, I didn't tell you to calm down, I told you to breathe, Don't say the c word. He's like, I'm not telling you to calm down. I know that makes you explode more breathe. I'm just like, like I get angry and I want to continue being angry. Like, I really, I This the whole mental health thing, like, I was diagnosed as bipolar when I was 12, I'm thinking it's either there is borderline personality added with that, or I was misdiagnosed because my mental struggles are beyond what bipolar actually is, which is a whole another rant on its own. I hate when people use bipolar is like, psychotic, like bipolar actually isn't that bad, there's other things going on, but um Mhm.

There are times where I just need to walk out, like I hit a certain point of the anxiety and the frustration and everything just building up them. Like, I'm going to go outside because this is our bedroom, living room, dining room, everything, but the kitchen and bathroom room. So I'm like, my only escape from everything, including myself is I need to go outside, so I'm going to go on a little walk, I'll be right back. What's asked me, like, you still have a good balance and how you to communicate with each other and how you to like, still support each other. There's nothing to feel bad about. Of course you're still in an independent ass woman can depend on her partner for something that's everybody. Yeah, and I'm sure he can depend on you for things. Also it's not a one sided situation. But in terms of the I mean it's quite possible you were misdiagnosed. I don't want to be surprised these things happen all the time.

Do you follow any um coaches or like mental health counselors, social workers, psychologists, any of that to help you? Are you on your own for now? I'm on my own for right now. Um Eddie. Really sorry my cats like knocking things over. Right, that's your cat. Like bitch. I'm here. What do you mean you want? What do you what do you mean you're on your own girl? You got this cat? Is that microphone for me? I am. I've really I've only ever had like Medicaid and Medicare where Medicaid was completely set up like um dental, mental, physical, all of that. So I could just go do what I needed to do. I was on a good set of medication and everything. Um And then we moved to new Hampshire and I somehow didn't qualify for Medicaid even though it's still just getting disability and didn't have a job yet or anything.

Um But I qualified for Medicare because I got disability. Medicare doesn't cover it at all. It covers like maybe 10% of each of my doctor's appointments. I don't get mental health, I don't get dental. I don't get vision. Nothing. But like, hey you know, they can bill you later for 90% of the full charge if you need to go to the urgent care, you basically have a discount card. Yeah. But now with this new job you're saying this is the first time you're getting all your benefits. Are you starting to see a lot more of that? I um I honestly I haven't seen all the packages or anything. Um so I don't even know what's going into it. I honestly, I feel like a child because I'm going to have to have one of my managers or somebody from the actual like customer service or selling side of it and be like look you need to explain all of these to me because I don't understand like I credential doctors.

I don't even have to do with the actual insurance. I look at the doctors um you know records and everything like ok yes, they meet all our check marks send. Yeah the the actual ins and outs of insurance are so dumb complicated. And when you actually need to use it and you find out the hard way that what you have is sh it oh man not great. When you, when you, when you make that first appointment you leave the office feeling good. And then two months later you get the bill that you call up your insurance company. Like I thought I had insurance and they oh well let me explain to you how your deductible works. Nobody told me this ship before. So I'm happy. One of my friends who lives around here actually is going to school for medical coding and billing and she was like yes. So there's actually an entire class that I took about the differences and insurance and I'm like all right so when I get all this information I'm coming to you right Yeah.

Yeah you're going to need her big time. Please hold my hand and explain this. It's some ship. Don't make any sense. It's some ship anyways. And just the other day too I was actually looking into because I hate prosthetics. I have to say that. But I was looking into some that can help me out in the sport at least. Um It's just hard to find on Kaiser. I don't know if it's covered. I don't know where I can visit. Yeah Where do you start? It's so hard to find resources. Gosh you don't know where to start. And if you don't have someone that can help you, what what are you going to do? You're just going to be stuck. Yeah. Do I have to go visit my old Children's hospital down in L. A. Just to like find somebody to talk to because yeah I mean I will tell you in general though if you're looking into trying to get something covered. You could try to find a phase Ia trist maybe or sometimes they call them like rehab doctors because sometimes a PCP will write you a prescription to get braces.

orthotics prosthetics or sometimes they say I don't know anything about that. You have to see a psychiatrist and then the five psychiatrists will do that and then your insurance has to say yes and then you have to find the place that takes your insurance and then you go there and find out about the braces or the prosthetics or whatever and you have to hope that the specific doctor that you need to see is also on the insurance plan. Exactly. Different doctors in the offices cover are covered under different insurances. That's what I do. Yeah because one day they'll be like Oh I'm sorry I take cash only what you take cash for this $8,000 visit. Okay onto the next one. But this other doctor in the same building, they take your insurance. Right. Right. Yeah but he's not available for four more months. Okay. Thanks though. Healthcare. That's that's a two hour conversation.

Yeah that's two hours just for the tip of the iceberg of the conversation. Of the hot mess. That is health care. Nobody actually cares. That's the spoiler. No. Yeah there's so much anxiety behind it that we just avoided until we are like absolutely needed or an urgent care. You know that's pretty much where I'm at right now because my PCP is horrible. Very same. Just avoiding things until it's like okay I have to do this. I'm gonna go do it now. I'm just gonna put this as a shout out for all doctors out there. Don't put things in people's records if you denied it to them. Oh wow. Well okay, while we're on list on records. Alright. You denied it. Don't put it. If you didn't ask them the fucking question, then don't put the answer to the question you didn't ask. That's also both of those are my biggest pet pet pet peeves. Like it'll be like one page denies this or that denies this or that denies this or that Normal.

Normal. Normal. We didn't have this conversation or you find out five years later when you're in surgery. Like wait, I had what? My gosh, yes kim said that in her episode. She didn't even know. So I will say it's hard to navigate the system, but I will say that we as patients should keep our own records. And I mean the real records, I don't mean to print out like bullshit. If you have a fever call us like, no. Like always press your medical records and keep your own copy. And when people look at you weird, like, oh why do you need that? It's my fucking information. Honestly. To the point where I have the now I forgot the agency, but basically like the hippolyta letter that says you have to give patients their records when you request it. Like I won't even have the conversation. I just hand it to them. Here you go. You want me to report you or not and ask for the itemized bill. Yeah. Ask for the itemized bill. What are you charging me for? Even though I'm paying what?

Even if it's a $10 copay that day asked for it. But I literally, I was like I just moved up here and had my first yearly exam and I'm like okay, so we're doing a pap now and he's like ah no you had 12 years ago and like yeah you're supposed to get one every two years. And he's like well in new Hampshire it's every three years. And like My mom had her first cancer cells at like 24. I really should be having them every year. Can I please have a pap? We'll wait till next year. But then I find out a couple months ago when I saw my records for the first time because it's the only way signing up for the portal to get my birth control refilled. That he put in my record that I did have a pap. And I'm like wow. Oh yeah, once my new insurance kicks in and everything and I find a new better doctor, I'm gonna be like, hello new Hampshire medical board that I have your number directly.

Let me tell you a story about a guy. Hold on. Yeah I have all the numbers for all of the board's ready to go ready to rip. Here we go pull on that note. On that note of of burning everything down. So we're about an hour in now? Which is usually when we start to call it. Is there any last minute area of topic or conversation that we absolutely missed? Um, snakes are good. Don't just kill them. Oh no, snakes are cool guys. I will say I understand because again, grew up in north Carolina where all the copperheads, rattlesnakes, all of that are like water moccasins. Everything pretty much the garter was the only non venomous snake. But um, like I understand the worry and the, you know, caution and everything.

If you're going to kill them, like you absolutely feel like you have to don't chop its head off One, snakes need a lot less oxygen than what we do. So, you know the whole thing of like, oh, you dropped a human's head off. They still have consciousness, consciousness for like 10 seconds. A snake will still have consciousness for up to 10 minutes. That's why they always say, Oh, if you cut a venomous snake's head off, don't go near the head, it can still bite you because it's still alive. And it is in writhing pain. If you absolutely need to kill it, crush the skull because that immediately kills their brain. They are no longer alive. They have no consciousness. They are not feeling it, crush the skull If you absolutely have to kill a venomous snake. But they're good for the economy do research instead. Mm hmm. Call somebody to move them. Did you save yours from the outdoors or did you? I actually, I have a ball python.

So she's captive bred, God knows how many generations. Um, but they're native to West Africa and I got her out of Petco Before I started working at one. But it was one of those like we weren't planning to get one at Petco. Which from my experience working there, it's not that it's bad quality animals and it's not even that, you know, the workers don't care. It's still retail and corporate knows it's still retail as much as all of the workers care about all of the animals. And we're trying to do our best and everything. We still have to face shelves. We still have to take care of customers. We still have to, you know, do this, do that, do the, you know, everything on top of taking care of the animals. And so a lot of times not by the worker's fault, it has to wait like the animal care has to wait some.

And it's like, oh, but that's not policy. Yeah, it's not policy. But you know, if these stores were run by policy, we wouldn't make any money and corporate would shut us down. But yeah, so it was the whole thing. We got her from Petco. We had gone in because we're thinking about getting a snake. And I was doing like an entire year of research on snakes took six months to decide that I want a ball python because they're typically very docile, very chill. They just kind of hang there and with my disability, like I want something that I can handle. So we went into a petticoat, I think that the dog food, something like that and There was a ball python there and I'm like, can I hold her? I haven't held a snake since I was like five years old and held a burmese python on a field trip with, you know, all 15 other of my classmates. So I literally just haven't held a snake, can I hold her?

And they're like, yeah, yeah, no problem. I held her and it was love at first sight and I still love her because that's my baby. We went in every, or at least I went in every single weekend for two months and handled her while we got all of the stuff and everything and then brought her home and she ate the very next day, typically snakes, you want to just like let them chill in their new tank for a couple of weeks before you even offer them food because they're getting used to the new environment and everything, But she ate within 24 hours because she already knew us and trusted us. Uh oh hashtag snake. Mom just all things. Mom got it. Okay. Wait, does that mean this does the snake and the cat fight over it And the and the dogfight over snake food. How does that work out? Yeah, we uh frozen thawed rodents. Okay, so they basically sit in a plastic bag and our freezer in their own little like ice tray compartment thing.

You just thaw them out whenever you go to feed them, warm them up slightly, not in the microwave because it's basically like pop tarts in the microwave burning boiling inside. Yeah, you just warm it up once it's solid under some warm water. Um Just kind of dangle it with some tweezers or tongs. Yeah, I know how that worked. Alright, well how do we know? We know everything? Well maybe not everything because there's a lot to a person. We know a decent amount now, so we learned holt holt oram, which most people probably have never heard of. I've never heard of it. Good to know Every 100,000. So I mean we could dance with just legs were good. Guys, don't worry about it, Don't come for angel and um be nice to snakes. I think that's it. Right, get it. Yeah, would be nice to everybody, but really though don't make choices for us. We can decide whether we can or cannot. Thank you. There you go. Well, thanks again for coming.

It was this was nice chit chat. Alright, disabled girls out. Thanks for listening to disabled girls who left, we appreciate all of your support and everyone who has taken the time to show us some love. Don't forget to subscribe, rate already. Review of our channel. We're on Apple podcasts, Spotify player, FM, google podcasts and more. You can also find us on instagram at disabled girls who left.