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. Welcome everyone to yet another episode of disabled girls who lift. This is Marcy and I'm coming in from south florida, became a land of the Seminole tribe and this is mary beth from California, aka a land of Aloni tribe. Our guest joining us today. I am so, so, so, so excited for Ryan crest to come and talk some sh it about what's going on and then the medical field, in, you know, in the modeling and entertainment field in DvDS and sport in her hometown, roanoke Virginia such a pleasure to finally get to talk to you and have you on board Ryan?

Yeah, thank you guys for having me, happy to have, you know, we've been chasing and going back and forth when life happens that us disabled folks know the most like happens. Yeah. So I'm curious because on your page you point out, you know, you're very active and modeling, entertainment, your nurse, all that good stuff, but you also point out on a lot of times that you weren't always a full time share user. So I'm wondering what and when and how and what happened and how did that transition go? Was it one day you woke up like fuck or was it like a slow, a slow change and you finally accepted it. Like how did that go? So um, for me and for listeners that don't know me, um I was born with LSD and most syndrome, um which you know, it's a connective tissue disorder college and efficiency um that causes all of my college into the super stretchy and all my door. Just look at really, really in a less era of other issues.

Um, but the most that actually relate to me and using a chair is just the fact that my hips, knees, and ankles all dislocate way too easily, mostly from repeated duplications because I was a dancer growing up. And so I did a lot of damage to my hips and even feet and all of that just normally. But because I have other skinless syndrome, it, no, it was dislocating every time I would come to dance class multiple times and wearing away at that joint. So what started as a cool party trick of me being able to pop out specifically my left hip on command over the years. Kind of, they just don't stay in it all now when I stand, my left hand is just kind of fall now, which sounds just as gross as the, as it is. But it started out I guess about five this years ago, but now it started with the limp and then I went on to using a cane for a little while.

Um but the cane was putting way too much pressure on my wrists. Um and so close and just kind of putting too much in my arms. So I went to forearm crutches with my physical therapist. And I was doing that two years ago. Um I was working as a full time E. R. Nurse and just getting by when I was at work and using my abilities outside of work and I was getting fitted for my forearm crutches and kind of learning to use those and my physical therapist which is like yeah I think that we're actually at the point of meeting a chair and so it was kind of using them simultaneously using my crutches um at work and using my chair you know giving like grocery shop or any time where I would be doing me on my feet for a period of time. Um Now it has slowly gotten to the point where I am using the chair all the time. I can get around short distances I can stand. I just have a super severe limp and I walked like a pregnant duck. But other than that just made me in my chair and it was expected but not I was told when I was diagnosed it 15 I'm 28 now Um that I'd be in a chair by the time I was 20 and I made it to 26.

So I'll take that and it was I don't want to say surprisingly difficult adjustment because it seems very obvious that adjusting to a wheelchair would be difficult but for me it wore on me more than I expected. The actual mental health issues where worse then the actual physical getting used to us being a chair user getting used to living in a world that not that I'm not made for act. So the actual mental close that I took my marriage suffered. I was trying to relate to people, anyone around the other people who live with me. I didn't feel like we're supporting me or were very helpful in my transition or dealing with mental health issues. I started having panic attacks. I was stressed to the max. I had to leave my job with bedside nursing. I had to move and find any place to live because there were 16 steps to my front door in my old house and my bedroom was on the second floor.

No, it wasn't gonna work. No. So I lost my job, my job, my house and ended up my like family, my marriage, I was an appalling cameras Claude and the stream that it kind of took on that and then choices that I need during that with my mental health and everything led to losing my family as well. So it was just like one thing after another and I had to process all that on possibly being a new wheelchair user. So it was like a hell of a transition for me for sure when that you definitely never really stop adjusting. Um and you never really stop with that middle battle. But one I definitely would say that my life is 20 times better than I ever was before. I was using the share because I didn't have the energy. I work full time again, things are looking up that's for sure. So do you feel like you've arrived or are you still working towards something?

I think I have both arrived as far as kind of now knowing who I am and a just how strong I really can be because of what I would put it through. Um And what I kind of was able to overcome but still it's an everyday battle. You know, there will be someone to look at me wrong or ask me the wrong thing in the elevator at work or you no doubt the fact that I'm their nurse for the million times that day. And some days it hit harder because oh I can't even imagine how being an E. R. Nurses and they're like I'm sorry, you're in the wrong room. Yeah. But definitely realizing a lot about yourself and and how strong you are independently too after leaving some of those relationships. So how was that? Like taking a step away from all of those people who you know, we're we're with you almost every step of the way it was, it was a crash course in learning who I was and what I was capable of because I write, I had people around me constantly, not only as partners, the caregivers.

Um, they knew my medications, they knew, oh, she looks like she's going to pass out, her blood pressure's dropped, they knew what to do for that. And so it was a lot of, okay, not only do I need to learn how to exist on my own as a single woman. This was also the first time that I was going to be single as a, you know, pretty heavily disabled woman. So there was that kind of adjustment at the same time, um, as well as having to find a new career within nursing because I couldn't work at the bedside anymore. And I'm as hard as it was when I went through it all and when it was really the heat of going through it all, I'm so grateful for everything. Because if you'd asked me this time last year, if I thought I was able to live in a studio apartment by myself, you know, do all this stuff alone by myself, I would have laughed in your face, but here I am doing it. So we are the strongest people in the world.

Y'all we are and hey, I gotta give you props. I think you're our first pali guest in all these years and it's only been a few years. I mean a few months, I'm sorry, feels like years, it feels like a lot of time I want to delve so much deeper into that too because like personally that's a lot of how I found myself on my sexuality. Found how you truly can be independent from other lovers, other spiritual partners, sexual partners, intimate ones, physical ones, you know, um by having more in a quad or a poly relationship and stepping away from that, I'm sure was both necessary and like relieving to you and, and in a pandemic, you know, how, yeah, how much did that affect? Like your daily? Um it was bizarre because I was used to living in this house with three other people at all times.

Oh y'all live together, live together. Yeah and we all, um, you know, work different shifts. So there was always somebody home, you're not, that was a good thing and a bad thing because you never had any time by yourself ever. Um, there was always someone around. So if you know, if I took a fall because there were so many steps in our home that happens a lot or if you know, my blood pressure dropped or there was something medical going on with me, There was always someone there To help me out. And so moving into this new apartment, I've had to think about things like I had to get, you know, Google home because you know, a little classier than life alert and it is 2020, but I needed some way, you know to call for help if I fell and couldn't get back up. Um, you know, I had to think about things like how I was going. There wasn't always like a 65 tall man around to get off, step off the top shelf. I had the video, you know how I'm going to do that.

So not only was it getting up the courage to kind of branch out and be by myself and live on my own, it was ourselves. Hey, I have to do this with the disability that is also fairly new. As far as mobility limitations anyway, it was definitely a lot. I am glad for obviously like our situation had become very toxic on all sides. Um when we all kind of left, you know, there are days where you know, I miss that that village feeling and that's why you know, I identified so strongly with polyamory has grown up in the south or my family, not everyone was actually blood related to me and I always have adults everywhere and people everywhere all the time. And so getting to this point in my life where I'm alone more than I'm not is so strange but also kind of nice for now. Yeah, forced but welcome change.

I feel like there's definitely a lot of people or you can tell whether this pandemic um forcing them to isolate or stay at home or the shelter in place wherever, you know, depending where you're at, you can really tell who has trouble just sitting with themselves because these are the people that are saying their support, they're still restless too, this too, that these are the people that are like, you know, jogging out of nowhere, you know, they've hated running their whole lives, but we have to be able to do that. If you can't just hang out with yourself, then you can't hang out with anyone else either. And even if there's not someone physical, they're like, I think this is one of the most social times zooming and skyping every week way more often than people ever did or talking on the phone way more often than people did and finding connections with other, you know, other friends who you didn't realize had all these similarities, which is why this online community of instagram or facebook or whatever has been wild the entire world sat down and watched, you know, George Floyd get killed by police and like we're all experiencing all of these things together, divorce, depression, anxiety, homelessness, poverty, everything, We're all experiencing it together.

And I guess finding other relationships that are somewhat more meaningful than the ones you had before. I think it was so strange for me because working in healthcare, um well I never got to shelter in place or you know, I didn't really get to quarantine or do anything like that at all up and continually working the entire time and you know, we don't really get that choice and so it's weird for me because no, I still kind of have to remind myself like, okay, this is not normal for everyone else, Everyone else's life. Everyone in my family that I was living with at the time was also still working. So it was very odd coming from that point of view and also very hard not to get better because we were the only ones who were still working and we're having to work harder than we've been working before way harder, way longer. Our as an earth, um not a lot of direction, nobody really knew what Covid was and what it is and what it can do to you and what the detrimental effects will be from being exposed early on and all that stuff and so it was very hard not to look at your friends who were getting to work from home for the first time and they're really excited about that and you're over here working your butt off.

Yeah. Not only is it draining, you're putting your life on the line every single day and as a woman with a disability, jesus christ, you know? Yeah, it's like a new form of triggering just to see the people that are like protesting because they want to go to the bar and fucking chilies, like I need a haircut, like masks or cages like are you for real right now, do you know my life? Alright, seriously? You're that concerned about it just put the freaking mask on your face and go to the grocery story, You're going to be fine josh. Yeah. To a second. Yeah, so that's definitely been uh one way in which social media has not been good for me and seeing people that are just like living life, like nothing happened, having parties, having weddings, especially in florida, which is still like coronavirus poppin, like having competitions, having meats like what? What's happening?

It's not it's not fun. So I'm guessing since you're working 10,000 hours and you're moving and getting settled what what is your movement looking like? Are you still doing anything in a free time? Do you have a free time? What is the free time? Looks like free time? Yeah, very little free time, but the bit that I've had, I've gotten to, you know the beautiful thing about living alone is I get to prioritize my free time and do what I want to do with it. So mine has been a lot of learning to work out from home because so the food can be very important to me with my disability. Um Probably about five years ago or so how did I said it was, it was a dancer. I was in the marching band in high school, like I was not traditionally athletic in any way, shape or form. I hated running more than anything in the world.

And now we know because my hips talk about the socket, but I thought that I was just kind of like a lazy kid. I had I was terrified of the gym, remember I worked as an E. M. T. At the gym in college and I was just like at all, no, I don't know how to do all this is very complicated. And the people at my undergrad were very judgmental and it was just like, you know, I'm not feeling that. And then my husband and I started, who joins like our local y about five years ago and he like, alright come on, we're going to come, oh I don't want to do this, I don't I don't know what the machines are complicated, I don't know, just come on, just try it. And it took about a week, a week and a half and I finally started figuring out what the hell I was doing and suddenly I was hooked mainly because suddenly I was moving better, I had more energy to be able to put up with the concept dislocations and um I could keep my blood pressure up for longer and you know, I could be upright longer um Instead of constantly having to lie down or take a nap or take a raft.

Um So working out and lifting for me has become my, if I don't lift, I don't get around, I can't do my job, I can't function for as long as I need to keep up with my online platform to have this go go go schedule that I do, there was just there's no way. And so it was family important to me and also very scary and it's the pandemic first hit and all the gym closed. I was like I am not prepared to work out at home, I'm not prepared to do any of this. I don't have the stuff that I need and there's no way to buy it. But this is a cool kind of learning curve to get better at working out from home and using what I have, especially moving and learning what I have access to in my new town and what I can do in my new space just a lot more than my old one. So I'm cool with that but lots of lifting from home and chef got back into the gym probably about three weeks ago because it's my gym specifically.

It's just other healthcare workers so we just all file over right from the hospital. Were you doing that all on your own in the beginning or did you have help or were you just like Googling like crazy like did you fail? It's terrible. How did it start? It started with a lot of Pinterest and a lot of youtube and a lot of my ex kind of teaching me just the basic because I could, I was always afraid of free weights Because of my dislocations. He taught me a bit with three ways and it was constant like no, I can't do that. No, no, no, there's no way I could do that, I didn't have the face muscles built up around my joints at all. I mean my legs are pretty good for dance with my upper body had little to nothing, but because of my ideas, I've been in physical therapy since I was 12 for almost every joint, so a lot of these movements, I'm like, oh okay, it's something that I've been doing in therapy all my life, just add some weight to them. Um So my ex helps a lot interest at first a lot and then I got it in my head that I was going to become a power lifter and so I went down a rabbit hole of that, But at 59 and having mobility issues, power lifting at that time was dumb.

Uh Yeah, I figured out what was, worked for me functionally a little bit better than the kind of leaving my colleague family has been a big a big change because they were all very big wait listers, we were in the gym, it's a week. Um often they would be my ride there. Um My expert friend in that group taught me more than anyone and so having to kind of go out and get back into the gym with all of these things that you know, remind me of this law, but also our so important for my well being and for my health and for me to be able to keep going mentally and physically. So that was definitely uh it took a little while to bounce with that and having to move and get a new gym helped certainly for all the memories of all the gym dates and everything. But yeah it's definitely been an adventure and a really really good one.

Well so what what do you actually have at home? Were you able to find things? I know like the whole world was shopping online for like everything. I had some bands and things left over from physical therapy so I would usually go for a little while and then I would think T. J. Maxx or walmart. One of those was able to open up pretty early here in Virginia. And so I got some like kettlebells and just three weights from my parents house and I was like all right I can make do with this for a little while longer. So you never did like the water jug on a stick or the tire, wood plank things now just like I'm just going to use my wheelchair. I lay on my back and that's what I was doing. Hell yeah with my chair it anyway how like uh yeah What is yours weigh 15-20 lbs? Uh yeah the one that I was using about 25 all together. Yeah that's just it's so awkward man.

That'd be a great adaptive strongman event press your wheelchair. B. Y. O. C. Well not to mention your job's pretty physically taxing right? You're I mean now with covid you're running around doing everything you're what changing people bathing people carrying them. I read that you did CpR on someone from your chair that I'm when I was at the back side full time was much more physically taxing. And I've been out of the bedside world for about they're almost in december. It'll be two years. I still help out on the floor And that's when I got to do CPR and learned that I can do all these things in my chair. But that was one of the reasons that it took me so long to get to working out on my own because I was working on the floor as an E. R. Nurse for 12 hours three times a day. Usually I was working night shifts and so I never felt like really go hard in the gym because I needed to be able to function at work the next day.

But now that I've taken my position right now I'm working as a case manager. They're just basically like a social worker in the hospital setting. We do a lot of like putting people in nursing homes for a lot of getting people medical equipment, discharges that kind of thing. Um So that has helped a lot of well being able to not have to go as hard at work. That's good. Yeah I could really I used to love working with spinal cord injuries and like people after stroke, but there's no way I could lift to hoist. It doesn't matter how strong I am like I can't lift in the hoist giant people anymore. It's not working out, it's not working out is what it is and there's something else right? Like the part of the reason why you moved over to case managers because a lot of the spaces weren't accessible. Like what is it? The rooms, the hallways didn't even have enough space for your chair. What's up with that? You're in a freaking hospital. I left that you are because we're giving out more and more and I had a couple falls not with a patient luckily but on my own um that's catered me enough to be like, you know the next time this has happened, could be with you know, a patient on my arm and that was just too much.

So I transferred the case management and it was at that time that I started using my chair full time and I'm in the main hospital settings and I'm realizing, you know, there's so many places that my church doesn't fit in a hospital like it doesn't make any sense. There is like there are only a handful of staff rings that I can use in the hospital, which is just nuts and a lot of them, it's people who are making things accessible. I don't actually use mobility aid and making the lip of the back and doors just high enough that it trips people up or making the doors just too heavy for a wheelchair users to open. And I mean like I lift weights, I'm fairly strong with my upper body. Like this is a hospital where your patients are sick and elderly and if I can't live get these doors open like I promised granny aching and either. Yeah, and that's why at first I was very hesitant to kind of work toward getting back on the floor as a wheelchair user because one I've never seen a nurse in a wheelchair.

And so I started looking around on social media and I found several and kind of started reaching out to them and I'm like all right, how do you practice? Because I've been a nurse for almost five years by this point with you know, while ambulatory. So what does this look like as a chair user? And they started giving so much encouragement and telling me different ways that they were able to do things um for you know push patients and stretchers or you know, it's for reaching I. V. Poles that we're up too high and things like that. And when I realized like the only thing that's holding me back from going back to this job that I adore is one, you know, society's expectations of what a nurse looks like to how accessible the places and three just my own mindset and myself just saying, you know, I don't think that I can do this from a seated position. I know I can do it standing but conceded some reason I just put up this mind block of like I'm not gonna be able to do something for a patient where I'm going to not want to stay in my chair and get up and help and hurt someone or myself.

So there was a lot of that kind of issue back and forth. But now um that covid happened, I got pulled to the floor several times um to try and help out and just see how much I could do and just that little push was all I needed to realize that there's not much holding me back except for my own thought processes and then the fact that there are places that I can't get to in the hospital well, but not everybody also has the energy to know that like number one, I can try and make this work. But number two, it's, there are a lot of things that won't work and you're going to have to make people uncomfortable and you're going to have to let people know like, hey this is shipped like, hey, you need to move this, hey, this is dumb. So hey, rebuild your elevator. Yeah, there's also a lot of that because I mean just knowing working in the hospital and having family in the hospital literally every like hospital room experience is you the able bodied family member and then the able bodied nurse just like shimmying and like side stepping and like let me move this, I move the trade, let me move this, let me move this.

I can't reach Excuse me. Can you move like so I can see how you got that mental block of like me chair. No way Well and these are 12 hour days at a time like you said you have to be on not only mentally but physically. Like you can only imagine all of our nurses in the world are freaking exhausted now. Yeah, not for you to freaking adapt with all of these inaccessible spaces. That's not fair to you. Sometimes you got to take a week not being on the floor. We get that. Yeah, that was another reason that I was just kind of like I'm not sure if this is even worse how much effort I knew it was going to get not only myself back on the floor but to you know, take down all those presidents that can't be done or that it should be done. But another thing that you know, Covid has done for the disabled population is show us that oh hey there are a lot of things that there are jobs can do to make these things were like allow most of the population to work from home or you know, change things as far as for how long you're going to be working or what your times are.

So seeing that those changes happened also kind of shoved me in the right direction to kind of start fighting back against us. And my joke is always that it was like as soon as I was put in the chair suddenly people didn't see me as a nurse anymore as if all of my nursing education and practice and intelligence and all of that was connected to the function of my legs. It's just been insane to me to see the stark differences in the exact same hospital that I worked before and how people treat me. And you know, I understand if I'm like hey, you know I can help you. Like do a DNA or something like I can help you pull that patient up in bed and they're like are you sure that doesn't bother me? It's more the often but I'll get a resident or a physician that will argue with me about my nursing knowledge because how could I possibly have are in after my name is I'm in a wheelchair.

People don't like things that are new. Yeah. It really sucks because you have to bear the brunt of it. You have to be the spokesperson for all nurses and wheelchairs because that's that's all there is to do you at least have somebody whether it's co workers or actual admin that has your back or you all alone as far as in my job? I luckily working in the E. R. So they have my back because they've seen what I can do standing and they're like oh yeah she's fine because they saw that they were adaptations that I had to make even back then because Bds does affect on the joint. You know I have both of my shoulders. I've had surgery on to tighten up the joint. So I had to help kind of pull people up differently because of that. So the dots that's all that totally will vouch for me. The problem is leaders or other nurses in the hospital that don't realize it or have never worked with me before. And so they're the ones that they don't seem that's Ryan she's a nurse.

They just see oh that's right she's in a wheelchair. Uh who happens to be wearing scrubs for her degree. She put the wheels on the chair and they were like here's a degree. I don't know how she got here. Who literally. Right. Yeah I I think a lot of us in the disability world are realizing that we're either going to have to be the first of our kind to do something in an industry or the first in these circles that they've ever seen do and succeed. You know like for a long time I had wanted to become a pilot and I have been researching the fact that we have to research schooling and all of these things. But also are we allowed to are we allowed to become a part of law enforcement? Go into the military do all these physical things that they don't see us as as fit enough. And I've actually read, you know, there's some partially blind or fully blind people who have flown planes before or have been missing limbs who have flown planes, but they can't do it commercially.

So, you know, that's when you have that roadblock. Right? When you're certain deal with patients and customers who look at you and will never like they will refuse service from you even though you would potentially save their life. And that's a lot of the pushback that I would get when I would have applied for jobs on the floor is well, what if a patient refused to have you care for them? Okay. Well, I also live in the south. I worked in a very small, very rural hospital. And even back then I would constantly have patients who would refuse to have a bladder that would actually refuse what? I'm sorry, I didn't have to have a black nurse. So what's the difference that so that's the example I always bring up to them. I'm like, you know, you're going to have patients that refuse to have you as their nurse for any number of reasons. My wheelchair, I promise will not be the last. They probably hate anymore. Just because I'm tattooed. All right.

Right. Right. Even if you're the only nurse in the town in the span of 100 miles, you are the only nurse that could possibly again support them save their lives and they will still refuse. That's ridiculous. And the other thing is, you know, I would go and I would apply for a job. And for example, I had one my very first time I've ever put down for a job or not given a job because of my disability. I just started walking with a cane and I did a phone interview and it wasn't even a handle on nursing position. It was an administrative position. I did the interview. The whole thing was great Until I happened to say, you know, Hey also I walked with a cane just ahead step me being dumb and naive because my disability had been invisible for 20 years. And suddenly all of the praise and all the good things and all the talk about rescheduling that had been happening 30 seconds prior stop and suddenly lost my number.

I kept calling. They didn't have any record of the interview. They wouldn't let me interview again. There was nothing I could do. And so that was the first time I ever got it. Was that back then I had that kind of choice. Do I disclose my disability or do I not now that I don't have that choice anymore. Out roll into an interview. And the first thing is that they're hiring and you're going to see is the chair and they're going to say, you know, can you do this job? And now that I can honestly say yes and I have done it, it's still not enough because all they see is the chair. You know, legally you're not allowed to ask someone, can you do X, y and Z. You know, you have to assume that yesterday apply that they can, but instead of just giving me a chance like a shadow shift or something like that, I just get so we'll call you, we'll call you a science, get me in the door and I will prove to you that I can do way more and we'll work harder than you're able bodied nurses because I have to to stay here.

That just makes me like extra because all I'm thinking of is just like all of the years of shitty nurses that I worked with in hospitals like yeah, somebody was actually passionate in here for a reason. You're just like, I mean, I don't think she can do it. So maybe not. Meanwhile you've got somebody that's like pretending to be on the computer and busy all day, but that person could do a better job than you. Okay. Alright, sure, sure thing. No matter how good of a track record how great and you know of a resume you have, you have to constantly prove yourself, it's bs constantly and it doesn't matter that, you know if you mess up at one time, but because you already have all these strikes against you, you're disabled, you know, and I'm heavily tattooed, oh I have a half shape, I have all of these things that you just see me and don't know about my work that are going to send me back. So they see that one mess up and they're like, oh because of her disability, she's out. Doesn't matter if it was a med mistake or if I dropped a patient.

Either way it's going to be because of my distant uh many doctors have killed people intentionally or unintentionally and they're still employed. So as far as your case management situation, is that still 12 hours trips. Um The hours are 8 to 4 30 monday through friday, which I was like, this is going to be great, turns out, you know, I think like 3 12 to spend. You have your three Children to knock them out and then you have all that time for your body to recover. Yeah. I made my little triple this able body work 8-5 months after Friday has proven ridiculous. Yeah. Don't function before 10 a.m. You got to be up and ready for five days straight, jesus. I so it doesn't matter. You got a bad day or a bad body day or a flare, like I can't just get someone to cover for me or swap my shift for another one later in the week.

Like I could when I was on the floor. But I still get to see patients and I still, I'm still involved in their care. So I'm thankful for that. I mean, case management is still pretty important. I think a lot of people don't really give it the, I understand the value in it because that's the difference between, you know, somebody getting shot on when they leave the hospital or not like that's your job. Although not what you pictured. Still very important in a part of the process. How does it work when you have to manage your own care though, if you're full time every day forever? Uh It doesn't, yeah, I've had a lot of issues with that because I'm basically managing it myself down here. And a lot, not a lot of physicians know about ideas, not a lot of them want to even figure out how to manage me. So I've been managing my own care for the last few years and it honestly been better than it was before. But it is a lot harder working that monday through friday up, trying to fit in doctor's appointments and fit in, you know, self care days and try to live in the actual normal life and do normal adult life things.

But then hey, I have this disability that I have to take care of on top of my full time job and running a platform and miss wheelchair Virginia. And well, let's talk about MS Wiltshire Virginia. That's that's this year. Huh? It's supposed to be 2020 but because of Covid, I'm keeping my title all through 2021. Uh Now what you get is this a beauty pageant esque bodybuilding or like what what are you the Miss wheelchair Virginia owes? So it's an advocacy based pageant. I've never heard of it. I didn't know anything about it when I first went out for it. There was a photographer that I worked with a few times is the photographer for this program and he does a lot of like the Miss Virginia and all the beauty photos. So he called me and he's like, hey, you should go out for this. I've only been in a chair for nine months. And so I was like, I don't feel quote unquote disabled enough to be representing, you know, with wheelchair users of my home state?

Like, like no, no, no, just go out for it'll be good experience. So I'm not shy. So I was like, all right, I like running my mouth. This could be fun. And as long as there's no like bathing suit section or like evening gown talent talent portion, you know how it works, Like, do you see me? We had to do the interview section very similar to like the Miss America pageant um where you go into a room with some judges and they ask you questions about disability culture law, just about yourself. Yeah, you had to like know your ship um which was intense for me because I'm like, I don't, not at the time, no, all that much about disability culture, but for what I had to learn and cool. Um but then we had to also write a speech and kind of develop a platform that we would use, you know, to go around and speak to schools, hospitals, um fundraising groups, all kinds of stuff. I mean there's been ribbon cutting and there's a whole babies hold on.

Then there's also been a lot more like public speaking, a lot more like telling my story, which has been really, really cool, especially because I do come from a healthcare background. I've gotten to go to like a statewide physical therapy meeting um and kind of educate therapist about this is what other families looks like. This is what a new wheelchair user thinks so I can speak from all of these kind of backgrounds and actually I I love talking to medical students because they know the least about how to like function around disability and how to speak to someone with a disability which they come in and they're your patients or how to deal with their mobility aids in a way that's not going to horrify them. Um so it's been a really cool journey for sure. I expected to be met with a lot of very catty women and playing a lot about having to wear a crown on my head, but it's been fun.

That's funny, you know, that medical students would have the most knowledge and and comfort with people with disabilities, right? But that's definitely good exposure especially since people have never seen someone like you in the medical field and there you are kind of given and forced to create that platform for yourself. It's been cool to kind of develop as I was going along because I only developed my instagram platform as a place for me to basically ditch about my own disability because it was so invisible for most of my life that people who have known me since I first had no idea that I was disabled. And so as it was starting to affect more aspects of my life, I decided to go out there and be like, look, I'm going to lay it all on the table. So I had only had chronically right and then using it as like a instagram diary for myself for, you know, less than two years when I got this title.

And so it became this school off sheet was placed for me to just kind of Find out what I was going through with my disability and I was diagnosed at 16. I had no one to compare myself to doctors didn't tell me what a future looked like. They couldn't tell me if I'd be able to walk or not walk. So I could tell me nothing. And so that's in social media wasn't a big thing. So I was like, I let me develop a place where you know, if it's just me venting to the void, cool. So I'm going to benefit from it, but I started to pick up steam and started to find all of these, a lot of them younger women who started to look up to someone who was finally laying out, you know, this is what Ehlers Danlos syndrome has done to me as a human being, here is what my life looks like here, what I've needed to use to get around to function, to live a full and fulfilling life. And then also showing that, yes, I am disabled.

Yes, I use the facility a because I have Alexandra syndrome, but I also have a brain, a career or hobby, friends, family human here. It's not just a more good. So that's another thing I talk about that more than anything else. But hey, that patient in your bed is more than just a name on your roster, a name on your sheet. If that is a human that has to go home after you are done with them and live a full life, you cannot just think of them as okay, they're sick and I have to make them better. And here is how I do that. There is more to this than you have to see that person as april and complete human being and not just a diagnosis boom platform, boom bam. Oh man, I'm I mean I'm glad that there are people actually thinking about it and having discussions about it because that's like 2020 but people still aren't learning these things, you know, I graduated in 2014 and I didn't really learn about, I mean obviously I know that E.

Ds exists and you know, like Marfan syndrome and like there's weird funky wonky things and then I was like it nobody was ever like, oh, you know, this is like totally young people and maybe they'll look fine and then uh maybe I'll have to use wheelchairs, maybe they well who knows? Like, no, I was just like, all right, here's a list of things and uh next chapter and that's the same way nursing was too. It's like I knew the basics about what it meant to be a wheelchair user and the toll that that can take on a person's body, but you know, you know, okay, wheelchair users look for pressures or have bony prominence is okay, they're going to have issues that they're paralyzed with their blood pressure. Just very basic little things. Not like how did they live their life outside the hospital as a person, How did they get in this, share it? Was it from, you know, paralysis from an accident versus like PM or versus several palsy things like that where you learn these diagnoses and you learn these like bullet point little information about each one about all these different disabilities about limb loss.

All the stuff that as a practitioner unless you live in a place or work in a specific field where you're going to see a certain disability over and over and over. You just know that as a boxes, we med school textbook and that's it and that's, you know, not sure called at all. There's a million diagnoses to cover in the world and like I tell you, medical students don't take this as me saying like you're doing this raw. So what you are not chastising you is, you know, I hear as another resource for these medical students for these healthcare practitioners to say, hey, how do I enjoy our sexuality and disability for how do I ask my patients, what is something that they need at home to function? You give a patient a wheelchair? Well that's not the only thing they're going to need to exist. You have to talk about how they live a lot of smaller capitals don't have social workers, case managers take on that role. So your nurses and your doctors are the ones who are having to take that on.

And I honestly didn't realize how much we were lacking as a practitioner until I was in my wheelchair. I go and do my patient interviews every morning and I roll into the patient's room where they have been talked down to, you know, they're lying in bed. People stand over them and talk at them all day every day. And then finally someone rolls in and just happens to be at eye level. There's this huge change in them as a person and it's hilarious, just this little thing of just me sitting down and they look at me and know, okay, this person disabled, they must know what it's like to be in my shoes. So I'm going to talk real to her just like personal trainers, right? Personal trainers that supposedly look in shape and don't look like me, a person who is disabled or fat or whatever, you cannot relate to me. So you cannot tell me to do 200 push ups. You know, you do not know what I am capable of because you live a different life.

Even those practitioners or physicians who don't have the resources, I feel like your platform, your speeches, all these talks are so important because it's really a mindset, it's not so much the resources or what you were able to read in med school, like the mindset and the conversations that were lacking surrounding disabilities, surrounding chronic illnesses and and like you said, taking that diagnosis or that disability away from somebody and looking at them as a freaking human that has a life outside of their wheelchair outside of the hospital bed. Absolutely. Just because your diet, this is the same as the last patient that you treated those patients are not the same? I'm going to have the same experiences are not the same thing. And it's interesting to see what's going to happen to what they call the covid long haulers because they're going through what a lot of what has happened with people with the DS or people with Lyme disease.

Like even when I went to school, I graduated 2014, they taught us that Lyme disease was like one and done like we'll take bites. You got sick and then you get better. And then I met people that are like, yeah, I have more in disease. Like five years ago. I'm like, but you don't, you sure? Uh, that's not what you should. It wasn't in the books in the book. That's what they taught me. So it's not be interesting to see how, how this turns around with how many thousands of covid long haulers are we going to have? That's really going to shift people to start waking up to like, okay, maybe we have to actually pay attention to people now. You're not the first disease that we have. That's going to have these long term fallout that, You know, what is it going to cause what are these patients going to look like 10, 20 years down the road? Going to be very interesting to say that it is and it's your exercise and the movement a part of these talks when you go speak to people do, they expect that you're like weaken nothingness or what, how does it go do?

They always ask me about my hobbies and I'm like, oh yeah, wait, what, when you're diagnosed with that is like the first thing they say do not do. Um so they never expected that. And so that's what the fitness aspect is a huge part of my talk because there's a proper way to do everything. And like you were saying, having that personal trainer or that coach that doesn't look like you and doesn't know about your disability was a huge reason that I didn't start working out or didn't start going to the gym because I knew my body and I knew how easily it was to injure myself. And so I would have these friends that like to lift weight through, I try with a personal trainer and they'd be like, no, you just need to do that. You just, and I'm like, no, I know my body, I know that's going to cause you just got to push, you gotta push through it through it like that's not how it works. And I would get so frustrated because you know, they didn't know and there is no training manual for this. And so when I was first starting out, it was lightweight, high wreck, just seeing what my body was capable of because I heard all these *** thought that this was just something I was not gonna be able to do.

And so that is something I talked about a lot because a lot of people with this and this and then with any kind of dysfunction of the autonomic nervous system which comes with taylor's family. So it affects are quite light resources, reactions and it affects our blood pressure. Is another thing that they are like, no, you're exercise intolerance is something that you can't do. Like, no, you just have to find what works for you. Three others demo stations completely different because there's not a lot of research right now to narrow it down. Some people can't deal with lifting weights, but cardio is great for them. I personally, my body does not tolerate strict cardio very well, so I have to, you know, go easy that way. But so there's been a lot of educating my physical therapist that I speak to, You need to teach them, you know, not to fear exercise and not to fear the gym. A lot of symptom management comes from exercise for people with joint disorders and poor people with Osama. Yeah, that's awesome because it's such a shame.

It should be like a no brainer. Like your joints suck what surrounds your joint muscles. Maybe your muscles shouldn't suck. Hello, It should be a no brainer, but it's not, that's the first thing they tell you is I'll just drink some water and try swimming or something, you know, take wall, yep, I always make sure to also tell me, you know, I have done stupid things. I remember I was doing Arnold presses like two years ago, way too much weight, but I should have never done and I ended up having a full shoulder duplication in the middle of the gym where I couldn't get it back in and I ended up with me having to get a second shoulder surgery, but this is because I wasn't looking at my body, I wasn't wearing my braces, like I was supposed to like, these are things that I had had no issue being able to do if I was braced properly. Do I look to good every time I go to the gym, Yeah, do I can't know like this is what makes me happy and this is what allows me to have the quality of life that I have worked so hard to get back and if I can convince some other brainwash little girl that has been told by every doctor she's ever seen that she should never enter a gym, and fitness is terrible for her.

That that is not true, then I'm happy that I have made strides with this and those accidents literally happen to everybody or anybody able bodied folks, like people who don't look like us, but The fact that you put a 10 instead of yeah, MS load the weight don't put on the right collars, you know, but you have to live in fear because you live with a disability that needs to change and it's funny because people will make blanket statements like oh try swimming. Swimming is hard. How are you talking about? Oh try yoga. Yoga is also hard. What are you talking about? Like you're not helping anyone the easier things like swimming and yoga. I've seen research articles like oh lo of impact activities like jogging like that's not low enough, you can you can still injure yourself doing all of those things.

Yeah it's been a tree that and then once I started to get more into the gym and then you know, branching out of what I was comfortable and looking at people doing Pilates and people using different gym equipment that have disabilities and finding them on the internet and seeing people with other families doing these lifts with these horribly hyper mobile extensions of their joints and I'm just like okay so that I was started getting into the community, okay if you have another day in this body, this is what this move is going to look like. This is what it's going to feel like and here's how we can do it safely. You don't like wearing braces, here's the way to do it that way. If you like wearing braces. Here's some recommendations just because you don't get that social media has at least given us that conversation I guess and we honestly just need more physicians and nurses that are weightlifters because they know the body, they understand movement.

You know, we can actually wait The old ask like neurologist and like old ass rheumatologist like these guys haven't seen a treadmill or like put on a pair of shorts in decades trying to tell us how to move like what, like it really does piss me off and not that every therapist is going to be amazing, but if you're coming to see a doctor and you're like I have pain and I have a problem, it should be like, boom, don't see a physical therapist figure your sh it out. Even that doesn't happen. It makes no sense to me. No, because they got to make money off of pharmaceuticals. We got to do all the x rays, all the tests. I came in after the old press incident in the dislocation and I was like I did this lifting weight and they were just like, well you need to stop that immediately. And um if you're having issues with pain control, we have built that you can use instead of working out like there's a lot about your story that's very interesting and I'm sure a lot of people would love to hear more but generically speaking, what would you say to someone with the hyper mobile body just like two sentences where should they start if they want to start moving or working where they think they can't work as far as starting out with that, this is any kind, you know, start with what feels good.

What did you love to do before your body kind of got to where it is now that and if the chin is intimidating at first, you know, building up that baseline strength is important. So bodyweight, everything, there's so many exercises that you can do just using your body wave that you know, it's done correctly. Use youtube, find yourself up, you know, instagram fitness influencers that you like in trust and go from there. Start small, but you know, move your body move your joints. Yes, it is going to hurt effort. Yes, it is going to be awkward at first, but it will be worth give it time and don't just go one time and quit And where can people find you if they want to check out how you move and how you live and how you uh miss wheelchair Virginia 2022 20 1, 20 one, you can find me on facebook, twitter, tiktok and instagram all the same handle.

It's going to be chronically underscore. Reid chronically underscore our wise, you can find my modeling gym stuff and all of my travels as miss wheelchair Virginia. You're welcome anytime. Um this is your house too. Now you don't have to ask before you go in the fridge. Just let us nobody came over and girl that's that disabled girls out. Thanks for listening to disabled girls who left. We appreciate all of your support and everyone who's 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.