Disabled Girls Who Lift

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E52: Fitness with Chronic Illness (Sam Salvaggio)

by DGWL
August 9th 2021
01:00:55
Description

Marcia & Marybeth speak with Samantha about all the things fitness, multiple sclerosis, personal training, disability identity, and bikini gardening. Listen along as she shares her amazing tips... More

Welcome to another episode of disabled girls who lift. We're so happy to have you back real quick, we wanna shout out our lovely supporters on patreon and via anchor, we have valves Aiden kelley, Danielle, cassie and Catherine. Thank you for your monthly contributions. If you don't know what I'm talking about, we have a Patreon page or you can click directly on the anchor page and support us and our conversations and our web hosting fees and all that good stuff. You're doing great, Amazing. Thank you. So this is Marsha on Seminole tribal land in south florida and I'll let mary beth take it away. Hey yo it's mary beth sitting on a lonely land here in northern California. Um yeah, I do just want to give an extra extra shout out again to everyone that marcie has mentioned because without you, we wouldn't be able to do this every month and be able to introduce all of these amazing guests as you all know.

Not one disability is the same. So if you see multiple people with limb difference, this is multiple sclerosis, literally everything, everybody has their own experience. So, um it's such a privilege to be able to invite all of these amazing guests to share about how they train, how they do their daily activities. So without further ado we want to invite our amazing friend um if you were on the panel with us last month, she joined us as a Panelist. Um Samantha Selvaggio Benderman. I'm just gonna say both of your last name's coming in from Durham north Carolina sitting on, oh Kenichi band of this opponent nation land I believe. Um Samantha is a personal trainer, fitness studio manager, bikini Gardner, invisible illness advocate, cat lover. And um it's currently residing on 10 acres in Hillsborough north Carolina.

So um I really, we just want to give you an opportunity to tell us a little bit more about um I know you told us about about your diagnosis, your active lifestyle, but we'll just have you start off with that. Yeah. Hi everyone, thank you for having me. This is so awesome. Um I'm Sam and let's see, I was diagnosed with M. S. In 2000 and five. It was kind of like an overnight shift. I was kind of like normal college student before. Yeah, end quote please. Um And then I woke up one morning and was like sweating profusely. I couldn't use my dominant hand, my right hand. Like I couldn't write, I couldn't really walk. Um I was seeing it like double vision only. Um And I was sleeping so I was slept for like 20 hours a day. Um And yeah yeah it was like this is not right, let's go to the er um So I went there, they did a bunch of tests and eventually like diagnosed me with M.

S. Um And from that like the past 15 years have just been like one learning experience after another. Um Kind of gone up and down with like a pretty big bouts of depression where I wasn't healthy and doing the best things for my body and then um working out and movement and lifting weights, that's kind of what saved me and helped keep me on track, and now we are here today, wow, that's amazing. I think that there's a lot that's missing when it comes to um like the stories of how people get this diagnosis, I mean every diagnosis is different, but I mean, for M. S. In particular, because you all share these stories and that sh it sounds traumatic and I feel like that's never been, like, even when I went to school in physical therapy, they're like, these are the lessons diseases and then the person will feel this and then they'll get like, no spinal tap, but then, you know, joe comes on here and was like, I felt like my head was floating, I had nobody the fuck.

Yeah. Uh and also have to keep going with your life like that. Exactly now, it's like not a thing of the past, this is a thing of the present, and you're finding ways in which you have to adapt both in training at work, literally just waking up every day. Yeah. That's pretty nuts. So after your initial diagnosis, does anyone even talk to you about that part, or even till now, uh it It's been like kind of challenging, it was really hard in college because when you're 19 and most of your other friends are 19. they just, I don't understand. Um So it was like super lonely for a really long time and for about a decade I was like, just really absorbing like other people's opinions and like what they projected onto me. And so it wasn't until about five years ago where I like really dealt with the diagnosis and was like accepted it and created like my own viewpoint on it.

Um But the first decade was like pretty lonely and that's always been like, one of the more um negative things with M. S. Especially being young is that it's just hard to find like a community and other people that like truly understand because unless if you've been like chronically ill, it's hard to know or disabled, like it's hard to know what that life is like, like on a daily basis and to be able to like fully relate to someone else. Yeah. That's tough. And that really sucks. That really sucks. I think the part that sucks the most about that is like you saying that is nothing new, right? Somebody else listening to this is gonna be like, yep, that's it sucked. Nobody got it. It's terrible. How do we have life changing things happen? And like these physicians or whoever just like O. M. S. Alright, well these are the drugs have a nice day. Yeah. Yeah, shouldn't it be automatic. Like, all right, so who you guys have, like, what's your support team?

Okay, you have a therapist? Okay. Let's get you one. Like why is it not? What's Cool though is like so you got diagnosed at 19 usually that's very rare for a lot of physicians to even consider because they're like, Oh no, you're you're young. Just go to sleep or eat um eat this, this and this a voice rest. Like, right, right. Um But did you did it take a while for them to kind of come up with that diagnosis or right after that? It was like right after so initially they thought it was a stroke. Um And then with the MRI it showed like past lesions um on the MRI it's like white spots and that's areas that have like scarred over and healed from like past attacks. Um And so they saw some of those and they were in areas that were typical for M. S. So they thought it was a mess and I didn't really want to suck around because I like I was trying to write and I looked like I was like learning handwriting all over again, like a little kid.

And so I was like panicked and I'm just like yeah tell me what it is and I want to take medicine for it and do what I can to get better and like move on. But yeah, they thought it was a mess pretty early on. I ended up going to like two or 3 other M. S. Specialists. Um And that 2nd and 3rd specialists were not good decisions because they treated me kind of like in the stereotypical terrible doctor way of like you just party too hard to get your life together and then it really like think it was M. S. And so I stuck with the original doctor who thought it was and we just treated it that way. Yeah. The shitty thing about chronic illness still mary beth because that's not exactly, I don't know how many blood tests you do but like if if they don't really hit you like when you're at peak what the funk ary like everything's gonna look fine.

So you know maybe today if if she's fine and they do a spinal tap, they do the blood test or whatever, they're gonna be like oh you're normal, you're just stressed. But if they caught everything in that moment where everything was funny, they'd be like numbers through the roof, right? Like nothing stays the same. So that's the problem and you can be explaining like your worst symptoms literally and they don't see it so they don't see it. Yeah they don't believe it. How the fund do you prove that As the 19 year old? Yeah like I'll never forget the first the first asshole neurologist I saw and I was like you know sometimes I've been forgetting to like that I left the stove on like I leave the door wide open like the ship is really scary and he literally looked at me and was like, it's not like you have dementia. I was like, why would you, but what if I do, why would you laugh at that? Right? This isn't a joke. Am I a joke to you? Like? Yeah, so that's that's the tough part about chronic illness and why a lot of people go forever before they're diagnosed until it's like, yeah, like you just said you had scans of past attacks.

So these are things you probably didn't even like didn't notice at all. And I mean so that time was extremely traumatic and I'm glad that I didn't really realize what was going on at the time because I think I would have hit a lot harder. Um But I am like super grateful that it was such a like should show all the time because a lot of people with M. S. Do go like up to like a decade or more with like these weird random symptoms and doctors can't figure it out and like then the longer they're going without medicine or just like treating them disease like and it can progress like further in the future and it just not a good combo. So I'm very grateful to be like diagnosed early. It just sucked Here we are 16 years later. It's pretty nuts. So how frequently from then on, have you had those big giant flare ups?

So I've never had anything like that again, thank God. Um And my second relapse was actually probably the next most severe. Um So I had gotten like the flu in college and I think that just stressed my body out. Um And so for a few weeks after like my left eye was blurry, but I wear contacts, so I just thought like, oh there's some shipping, my contact, like I'll take care of it, like I'm in college, so just like whatever. Um And then I went to the doctor and it was actually optic nor itis, so I had a lot of inflammation in my optic nerve and I couldn't see out of my left eye, it turns out. Um And so that was the worst one and because I waited and didn't really know what was going on and never like fully healed, so I can't really see that well out of my left time because if I was left with just the left, I would not be a good situation. Um But ever since then, I mean I've had about a relapse or like a decline in functions like every you're too after that um kind of been like switching around medicines since I got diagnosed to try to find something where I'm not having relapses that often because the treatments really hard and can have a lot of like long term effects, so um But yeah, it's like every year or two, is there something consistently that you can tell, like when it happens you're like sh it I knew I shouldn't have going to the beach and then whatever, whatever, you know what I mean?

Yeah. Yeah, it's 100% of the time my body will not be able to regulate temperature so I get like crazy hot flashes and like sweating. Um So that's one sign I'm usually like much more tired and fatigued. And then the other one for me is like my legs get really heavy and like we can kind of like, they feel like noodles are like jello so um those those are the big three that are like please step back, relax. Yeah, relax. Yeah. Oh man. So how do you adapt the way that you train because you manage our own that place manage, manage. And is it the air conditioned? Yeah. Yeah the studio is called intent fit house and um thankfully a lot of the clients like it very cold too so are Temperature.

I think the thermostat set at like 65. Yeah. Yeah we have like crazy fans and everything so it works out because no one wants to be hot. It turns out so um that like working out is okay from that standpoint. I don't really work out like exercise outside very often when I'm working outside like doing the bikini gardening. I have like Um headband and wristbands that hold ice packs and then I have these like inserts to put in my bra and they have little beads in them and you soak it in water for like 10 or 15 minutes before and they puff up and then you put them in your bra and as the water evaporates it helps. Cool. You have links for all of those now. Link it in the chat. Yeah. Damn later. By all of those who Sam's living in 2040, living in the future.

Well, I was looking hot outside everyone. Like they always have these cooling vests and I don't know if you all have seen them but they look like, I don't know like fishing vest with like a bunch of pockets and they're like khaki colored and they're not attractive and I was like, I am finding a cute option to help keep me cools. And so those took a lot of hunting but it was worth it. Especially the bra inserts. That's huge. Like keeping your chest cool. Yeah. That's amazing, wow. And do you find that like certain types of sunscreen work better? Or do you buy like those UV close? I don't, cause if I get too hot, it just like goes south. So like that's the other point of the bikini gardening is like the limited closes cooler for me. Um But I'm sure the U. V. A. Or B.

Or whatever it is. Um Close would be helpful. I just don't do it. It's just not your vibe. That's really great that you have a good place to work out though because that it's not common. Yeah it makes a huge difference. And especially like during the pandemic I've been very grateful um because it helps keep me sane and so like I need to work out and so it's nice to have a spot to do it. And what were you doing before that? Because from what you told us that is relatively new, this training and managing. Yeah. So before that I was managing a other fitness studio, like a cycling and strength training studio. So you're not entirely new to fitness world, right? Yeah. Training because personal training started or you got certified this here, right? Yeah. Just a few weeks ago. Yeah, it's amazing. But I'm also curious because you said um I guess around the age of 1920 ISH, when you were still diagnosed, you said fitness and training saved your life where you already, you know, going to the gym, was it kind of recommended by their friends, colleagues, friends, look experience, colleagues are physicians.

Um Or like how did that start? Yeah. So when the one thing like I always felt about M. S. Like even right after getting diagnosed um was that I was going to try to control the stuff I could and so that's like diet, exercise, sleep and stress. And so I did start like going to the school gym um Right after getting diagnosed, like once it took me like six months to fully recover from that first relapse. And so after that I started just like going on the elliptical for like 20 minutes or it was mostly elliptical because it was in college and I was like intimidated by the weights and it was at Ohio state. So it was a lot of like very athletic. Don't we all start as cardio? Yeah, But also like no women in the weight room that Yeah, Yeah. So it was mostly elliptical and that uh lasted for a few years and then I got really depressed and fell off the wagon and then got back on and then, you know, just up and down what made you finally grab a kettle bell.

I had a trainer, uh I had just started with him and he focuses more on calisthenics and like that type of training and then um strike training and stuff and he always used a lot of kettlebells and um he was the one that really taught me to like be aware of my body and form and just like made me feel empowered from lifting weights. And so that that's the reason why I stuck with it is because like I found empowerment through training with him like that those early years. That's awesome. Yeah. And what's important to is we're getting more and more copts who are diagnosed or self proclaimed like adaptive athletes, all those great things because as you're finding more adaptive athletes or people that are wanting to get into training for the first time, they know they can talk to you about this stuff, I know that you've been through it and you know, Yeah.

Finding a coach and like people that listen can be really challenging um and people that know like even know what your condition is like when I was first diagnosed, like no one had ever heard of M. S. And it wasn't even as like prevalent as it is today, so people were just like not knowledgeable and not super helpful. Yeah. Yeah. So when it comes to your actual support circle, your friends and the family, like, how are they in the beginning of your diagnosis and how are they when you finally found your footing and your diagnosis did anything change? Um my so my husband, I've been with him for 15 years and we started dating shortly after I was diagnosed. Um So he's been around the entire time and has been supportive uh regardless which has been great. Um I think my parents have a little bit more of a challenge with it because I think it's like their kid and they don't want anything to be wrong with them, and I think they have a lot of trouble like accepting and also not placing any blame on themselves.

Um So it's been kind of interesting like, I don't know it, I haven't been talking to them that much honestly like and since I have found my footing, like, especially within the last year or so, because it's just I'm finding it difficult to like relate to them because I feel like I can't share that with what's actually going on. You can be your whole self because you're worried about how they're going to feel. Yeah. Because then it's like, the next time I'll be like, my mom will be like, I was up for three hours last night because I couldn't sleep because I'm worried about you. So, um, not as open with them, but uh, family or husband and friends have been really great. Yeah, I can see that. Just a lot of the pretending that I'm okay, I'm all right. You don't need to worry or take care of me, like feeling that, you know? Yeah, burden, which I hate using that word, but there are just some people, even if they're close to you that you just don't want to talk to them about your disability with, like, that's why I have these sessions with Marcy to our community because you'll just understand.

Yeah, there's not, there's no pretext there. And it's, it sucks because it's not your fault, right. Like it's not your fault that you're sick. It's not your fault. You can't speak to them and I like that some ship they gotta deal with and it's like, okay, so now I gotta do, like unpacking for myself and deal with my diagnosis and then also like, try to walk you through it, like what the fuck. Yeah. And that's why I was like I'm not doing that. We're sick of having to be strong all the time, so yeah, I can take care of my life and be your therapist like. Yeah. Oh really? I'm gonna have to start charging you. Sorry mom. It's really a whole complex. Really. And where is your family from? Um Ohio. And there in north Carolina now they moved to be closer to me. And I partially I think that's because they think I'm going to end up in a wheelchair and need them to take care of me because they were much further away and they're creeping closer.

Did you go to north Carolina for school? No, I went to Ohio State for undergrad. And then um my now husband had gotten into school uh pharmacy school at UNC. And so we moved down here and then I went to MEREDITH College and got my masters in nutrition later. Oh damn, contraindicated in here all the students. Yeah. How Did you end up on 10 acres? So well in um graduate school of my project, what like my big project was making a documentary following like a tomato seed from when it's like made and put in the pack it all the way to someone's dinner table. And so we did a lot of like filming and stuff at local farms and I just really fell in love with local food and agriculture and working with the land in like a very like synergetic synergetic like harmonious way.

And so um my husband is very outdoorsy, like I've always been more of the city person and so when I started getting into it, he was like, yes. And then we started looking for land and kind of just went from there. I love that. And is it mostly like vegetable and fruit gardens or do you have any animals? What do you use your acreage for? So um we should, we have like two acres cleared around the house because it's all wooded and we didn't want to clear too much. So we just stood two acres around the house and we have veggies berries. I'm like trying apple trees, but it's really not working out a lot of flowers and stuff like that. So cool. I really want a donkey, but that is not approved. You don't know.

I think my husband is just like, can we just chill please? A lot of work. Yeah, but I think we'll do chickens and bees eventually um goats maybe? I don't know. The bees was great for the, yeah, actually garden, right, All your flowers need flowering. That's amazing. That's so cool. So, so you, so you got into gardening before it became the national covid hobby. So how is that, how has that changed things for you isn't maybe things got more anything at the nursery. Yeah, my my veggie transplant. Uh Yeah. No I mean it's really good. I'm happy that more people are gardening and like getting back to the land. But yeah I couldn't find ship at the nursery. You got to start your own greenhouse indoors and I know yourself. Yeah and and then harvest all the seeds yourself and then just like do everything right?

Yeah. I mean God if I had the time I totally would. That's intense. It's amazing that I love self sufficiency, self sustainability, all of that. No that's awesome stuff and I'd like to see the documentaries, that public thing. Um It was on PBS like on the car. Yeah. Damn. Yeah. But I don't know I mean that was back in 2012 so I'm not sure what has happened and if it runs anymore. Yeah. Mhm. There's gotta be a link somewhere like a video online. Yeah, I'm sure I could find it. So when your personal training is is that a part of it, the nutrition and the knowledge you have from that. Yeah. Yeah. Like I think over the last 15 years I've just really seen how um it's like good like a healthy diet getting in movement and then like stress relief however that like whatever form that is in whether it's like movement or gardening or whatever.

Cat's like I've just seen the whole picture of how beneficial it is. So yeah. Being one with yourself and with nature and oh my God just like having that serene quiet space to yourself, drinking a cup of tea in the morning. I miss that. Oh, I don't have my garden anymore because I'm in an apartment, I live vicariously through all of your posts. You've got to get a container garden, you gotta like I know I bought some, but I was trying to regrow my potatoes and you need a much like taller container, which I don't have any way. Uh Yeah, so you've been like gardening in your bikini every sunday? Yeah, should be a separate, separate instagram account. Uh Well it's always awkward because like, I mean we're back away from our driveway is really long, it's almost a mile long so like you can't really hear anyone coming or anything and we get deliveries like all the time on the weekend and I'm just like out there walking around like dirty of ship like in a bikini trying to garden and the delivery people are coming, it's just, you have to have um garden beds in the front and yeah, you can kind of see every thing.

So most stuff like on the front and side of the house. Yeah, it's your life, your property, they like the view, whatever that's like when I have the, when I work out in the garage opens to the backs, so if I happen to be working, like when the trash guys are coming, they'll be riding on the trash, we see you girl. Okay. Yeah. Okay. But it's literally you're in a bikini. It's not like you're like butt naked tanning. I mean that's a society. That's weird. Yeah. Weird. Like a bikini on the beach. Okay. You can at your house scandalous freaking dads and their dad bods are mowing the lawn shirtless and when their underwear, so it's the same thing. Yeah. You're actually wearing more clothing. No, it makes them very nervous. Yeah, delivery guys because I normally would like purposely like walk out and like get the package from them.

Um And yeah, they do not seem comfortable. So weird. I gotta deal with it. Do I need your signature that badly now? I just leave it, I'll just take it on the doorstep. People are funny. Well, before you know, they're the next topic that let's take our break. Okay. Yeah. Daughter do do do do do anyways, back to the show, Back to the show. So yeah, bikinis, gardening hilarious. Honestly, these people out here are wild. They can't handle bikinis. Yeah. I mean, I work out when you're jim do you, are you fully cost because I work out like usually when I used to go to the gym, take my shirt off or whatever and then if there was other women in there, they'd be like, oh, now you took your shirt off, I feel comfortable to Yeah. To yeah, it's like you see sloppy as dude over here with his shirt off, you worried. I know.

Yeah. You just need one person to take their shirt off and then everyone's doing, it's amazing. Yeah, belly is all out. I don't care. I'm hot. I want to be cool and I don't want like clothes like catching and stuff when I'm lifting. Like, just take it off. Yeah. Do you have any actual sensory issues? Like how it feels on your skin? Yeah. So my left side, um, has always been like my opinion, the ass side and I, so it's like numb and tingly and like this weird sensation. So sometimes like it stuff touches me. I'll think it's like wet or cold and it's not. Um, so that trips me up sometimes. Um and close. Do you feel weird? For sure? Yeah. There will be some days where I literally change outfits like four times. I'm like, no, not this fabric. No, I don't want my armpits to touch. But do you feel the same sensation Marcy?

I like the cold wet feeling. Um In general, depends depends what I'm going through. But I do have that. That was probably one of my first um, what the fuss is going on is that I felt, um, you know how it feels when you put yourself, Don't you remember? You know, that's what I was going to say when you were done talking as I thought I peed myself. Yeah. Yeah. So I would be at work and this was when I worked in like a physically demanding adults spinal cord injuries, like hoisting them into fucking treadmill machines, right? And I'm just like, yeah, did I? I pushed a little to hold this man for a second. And so are you are you like, are you guys sweating or it's not wet at all? No, it's not wet at all. It will be like, it's incorrect information. You know? Like it happened yesterday when I was in the garden, like a piece of a plant touched me and I thought it was wet. So I like freak the funk out and jumped away. I was like, oh my God.

And it's like a leaf and it was dry, like it's so yeah, it's complete incorrect, incorrect information. Just drunk bodies is weird though. Body is weird. Very weird. And can you tell where your body parts are? Have you lost the joint since it's better than it used to be? I think I've always been very disconnected with my body. And so weightlifting and stuff has kind of brought me back to it, but it's also made me aware that I'm not as aware as I thought. Yeah. So what adaptations do you make for that? Or do you just try to go slower? Do you use different tools slower? Always in front of a mirror? Um Mhm. Or I'll be like looking down and watching my body. I'm normally okay if I can just watch it happen, like I just need to be able to see, because I just can't tell like if my knees like going in when I'm squatting or not.

So it's helpful just to have a visual affirmation. Um But that's it. I haven't needed anything else yet. And what kind of workout? So you're saying weightlifting, are you doing barbell workouts, dumbbell kind of belt type or kind of a mix? Um It's like, yeah, so I usually focus like, what do my dead lift pull ups, push ups, squad's hip thrusts, and then like different accessory worker, like things like split squats and lunges and stuff like that. Do you still have a coach or a pro? No, I've just kind of been doing like my own program. Um Because over the years I've been able to like figure out which exercises work and like yeah, I don't know. I feel like some exercises just work better with people, someone's body over other exercises. So I figured out what's worked for me and I just program those and then I try to add in some ship that I don't like to do on this.

So I'm not just like cherry picking. But yeah, work on those weaknesses. I love it. I won't do it of course first. Like I'll do that next week. I did enough today. I did a good job, I'll do it next time, There are days like that for sure. Uh Well that's nice. Also when you have, I mean you don't have to worry about access or your schedule and like you're in charge of all of those things right? Yeah. Yeah it's been really nice. Um Yeah, for sure. Uh Yeah I'm in the studio is pretty open because I mean we're, the studio had opened right before the pandemic and so it's not yeah yeah accurate. Um So it's not like we're very busy and we have a lot of room to grow, it's just great. Um But yeah it's a free space most of the time, so that's nice.

And as far as your actual work there, are you more than just um you know like managing desk work, you teach clients or group classes. I haven't started teaching yet. Um I was kind of waiting to get like the personal training cert and then see how I feel. Um I kind of do most things at the studio and so I need to like figure out a life like balance before I think adding classes onto my plate. Um because it's already just kind of hard to keep up when you're like the point person for everything. You're a person. Yeah, it's like operations. All that memberships, right? Yeah, meaning like covid protocols. Yeah. All the ordering. Yeah. That's not fun at all. Yeah. This guy, this is interesting. This is like a moment. We just entered a moment in her life mary belle.

I know it's a year from now, who knows what's gonna be him remain. This is cool, it's only up from here up and up that's amazing. I can't wait to see what happens there. And do you like do you even know you don't even know what you like yet, right? Like you don't even know maybe like online classes maybe like in person maybe like one on one, maybe you want to do nutrition coaching, maybe you don't like you don't even no I have no idea. Just try stuff and see how it goes. Yeah. What's good is you already have a gym, you already have to have a community, you have people that respect to you feel comfortable and because that to me is on the harder part the rest you can figure it out, try it. You don't like it's like it moving on. Yeah or you don't find like the right jim for you. Yeah right now you this is your space, you can put whatever like whatever freaking music you want. Exactly. Yeah. I mean in general like I don't know our studio tends to be uh inclusive and I think it's helpful that I am like very open about M.

S. And like my struggles and it has helped like bring in people that normally aren't comfortable in other spaces which has been good because I just I want to be able to offer that to people because movement is so powerful and can make such a difference. Like physically but also just mentally and I mean it makes you like less stress, but it's also a confidence building and so I just want as many people to experience that as possible. Yeah, that's so important. That's so important to after being cooped up in our homes for a year and a half, two years now and still kind of you know like we don't interact the same way that we used to socially, but being able to move again and leave um your bed sometimes literally any any type of movement, it's amazing for our minds. Yeah, that's all good stuff hard agree on that.

It's going to be interesting journey, can't wait to see what you come up with, but your instagram account and like the content that you put out, how's that going? Uh where did that come From, that's like 15 years of pent up shit. Yeah um Yeah, so I think like the last year you're too, maybe I've started being like way more open um and yeah it is, it's just a lot of stuff that I thought wasn't okay to talk about and it's turning into like way too big of a part of my life to not and so and I mean I felt alone for so long if I can make someone else feel less alone just even for five seconds after watching like some silly real like I'm down. Yeah. Yeah and these are all daily experiences like oh sh it something happened in the garden, No ship something happened during squats are a Lot more aware of it today than you were 15 years ago.

You're able to vocalize that a lot more. And literally we have communities out there that didn't exist 15. Yeah, definitely not, definitely not. But it's funny because I, I don't know how you feel. Um, like online, you know, it's a content helping people. It's like you're being your whole self or whatever. Um, but then when it comes to people that you've known before, that online part of you, it's like, y'all don't even know me anymore. Yeah, totally. And I think about that before I post some stuff. Um, I'm just like, oh God, what are people that know me gonna think because this is not like on brand for those Samantha that they know right? But the beta version, they don't Yeah, it's the only one they know well, like to my life, right? Exactly. You were never a part of my life before. Now. Welcome. Yeah, it is because I might, I might post something and then there'll be somebody that I like, I forgot that followed me and I'd be like, damn.

You know me. Like when I was in seventh grade, like, what do you even think about real, especially those high school friends. Yeah. Hello? You're still here. What are you even thinking of this one? Yeah. Yeah. It's great though. You're thriving. Yeah. I mean trying. Yeah. I mean, it is a lot of work, but if you're doing what you want to be doing that because you feel like you have to do it. Yeah. And your partner, this is your college sweetheart too. Because you Are you met, you said 15 years. Yeah. You met with Children. So Yeah. Seriously. Um So in undergrad, I studied pharmaceutical sciences, so I was in the pharmacy dorm and he wasn't planning on pharmacy school. So um there was like some formal or something, the first, you know, second year of college. Um and there were like nothing, there was nothing else going on that night.

So I was like, okay, I guess I'm going to this formal, like, this is dumb. And then um to be completely frank, like he was a one night stand that night and like, we just never separated. Yeah. So yeah, that's that's hilarious. Yeah. We love each other. But then after the formal, we just like started hanging out more and because of some dumb formal you into. Yeah. Sparks Blue Universe is a fickle bitch. I'll tell you what he was the only one you had breakfast with. After what? Yeah, he spent the night you didn't call him and woke up. Like, all right. Yeah, you'll do. I guess you could say. Yeah, that's fine. That's so cute. And you know, he's a sweetheart. What? When did you get married? Um We got married? Uh really? Because of chronic illness?

Um I was 26 and getting kicked off of my parents health insurance. And at the time I was like in grad school. And so um we decided to get married like right after I finished school so I could switch over to his insurance. That's reality of disabled. That's right. Like making americans based on insurance or how many people don't get married because then they'll lose Medicaid, right? Like I didn't really, I never really had marriage in the plan. Um but then it just was like, okay, I need health insurance. So Let's just 26, that's the age and that it wasn't even that much that was like knew that was Obama era. Yeah. Yeah. Oh that's right. Because before that it used to be 21. What was it? I don't remember, I think 20 was young. It was definitely not 26. That's amazing, definitely.

I remember thinking about, remember looking at like the health insurance from the schools and then it changed. So it had to be pretty young. Hopefully soon health insurance will be free so we don't have to marry nobody or marry if you want to marry me whatever you want. Right. Exactly. But it's so true though, because even if marriage, even if you think that it's like in general something you don't need to do, right? Because that's it's like a cultural thing. Alright, May everything's made up, right? So maybe you don't agree with what marriage means here, but at the end of the day like if you're in the hospital and some ship goes down legally. He pulls up as your boyfriend they're gonna be like okay. Yeah they're not so stupid. Like these are things you really that most able bodied normally functioning folks would never have to consider. Yeah. You really actually have to think about this ship. It kind of sucks. Yeah. Yeah I know a lot of the M.

S. Medicine's especially In the last 10 years are like really new and so they're really expensive. Um And like I mean it was pretty common for my medicine without insurance to be like between 70 and 150,000. I'm sorry what? Yeah. 100 1000. Yeah that's why I was like we're getting married bro. A top trim Tesla. That's so romantic right? America. That's an american romance. Thank God you're okay like I don't need from me that's fine. Yeah and that's just the one. I mean I probably I take like I think 10 other medicines on top of that. So. And are they normal cycle injections or just oral pills? So right now my M. S. Medicine is an infusion. That's every five months.

That takes six hours and then um everything else is pills. But for the first um eight years. 8 to 10 years of M. S. I was on injections and those sucked like those were just really hard. They just um would make like huge bruise. Like welts all over and make you feel like you had the flu every time you took it and so some of them were daily somewhere like every other day or once a week but you just didn't feel that great on them. That sucks. So now you're feeling so at the east of every five months towards the end you start feeling like sh it doesn't feel the difference. Yeah yup it was every six months and then the FDA just approved it for five months. And so I went when I went into my neurologist and I was like hey I feel like ship um And I still have a month until my infusion. He was like well let's move it up.

And so now I'm doing every five months. Yeah. Great six hours though. Goddamn. We had an infusion work. What does this incision work? Yeah so it's an I. V. And they it's like you go in and then you take Benadryl and some uh you get steroids infused like a small dose because some people have like an allergic reaction. So the Benadryl and steroids are supposed to help that. And then um they start the infusion and you just kind of like hang out read eat whatever. Um They approved it for three hour like faster infusion. But they like just to prove that and I'm not that's scary. Yeah like I don't mind just somewhere. Yeah take it slow because it's pretty potent. Yeah and it's this in the hospital or is it one of those dialysis looking centers? Yeah.

Yeah. Like an infusion suite. So it's normally like M. S. Patients getting their medicine or steroid treatments and then migraine patients. Okay so you might not be the youngest person there. No. And it's interesting to see how the age shift has happened like especially over the past decade because when I first started going there, I was the youngest by like 20 years and it was like I was like the black shoot. Everyone is looking uh who is this girl? Like she's here for a treatment. Um And then now I'm like normal age and most people are like like normal, most people are in their like thirties or forties, wow. That's interesting. That's very it depends on what doctor I'm going to but usually the youngest person there, especially when I go to the cardiologist, just like, are you here for your grandpa? Yeah, it's me. Yeah. So wait and Marcy, how do you how do you work around scheduling those appointments without an official diagnosis?

Yeah. Uh Well remember I work for myself so I don't have to prove it to anything to anybody. I just have to make my schedule work. That's pretty much it. But and then also again America so I have good insurance because my partners in the military. So I have the insurance that I could just pull up wherever I want. I could call Hello neurologist, I'm coming. I don't have to go to the primary to have them think that I'm right and asking for what I'm asking for and then allow me to go mm So you go straight to the specialist always and you already have your chart there and everything. Yeah. So it's a lot harder when you're stuck on the and I don't remember. It's like H. M. O. P. P. 01 of them is whatever I remember. Which is which but the usual setup is you have the one where you have to go to your primary care and I've been having brain fog and dizziness issues. Can I see a neurologist? And if they say no then you don't. Yeah. And then if they say yes, you call the neurologist and it's like six month wait then that guy's an asshole and you tried two or three more times and then you find someone maybe.

Yeah. It's a process. Which is also why a lot of people like, you know, you might hear somebody like, well she said to her I was fuzzy, she didn't go anywhere. So fucking hassles. Not easy. Yeah. So I'm sure somebody might hear that and be like, why something was wrong, Why did she go check it out right away? Like yeah hassle. You can't just show up somewhere like I don't know like if you feel this way with chronic illness, but it's like you're so used to ship, not working right? Like when something happened, it's kind of like, let's wait this out and see. Yeah. Yeah. Right. Yeah. We'll see. But what's today? Give two more days. Yeah, definitely. Because there's like seasons to it and just depends maybe because it was extra hot this week or it's because you ate something that was super salty yesterday or like, it's so fucking them not not to mention like being a woman and how your pain tolerance just has to be so much higher than that of men, literally.

It's like ingrained in our biology that our pain tolerance is just women go through strokes so many times in there. I'm that they don't even realize it undetected. And even that was probably my period or that was probably just a migraine. Like, what the fuck Even that though? That's a good point because every cycle I'm going to go through a whole cycle of things. Like right before, like the week before, I'm like, extra itchy everywhere, rashes or no ranch, just itchy and then like during it ship and then after like twitchy, like there's always something and then it will start all the way over again. Should be fun. Yeah. Yeah. It's something I've, you proof and I'll help, but you know, you're on your period. Well, you know what the uterus wants to do. Yeah, do your symptoms change with your cycle. Like the time of the cycle accurate. I think the fatigue and the pain probably changed the most uh like more tired and more painful.

Like the pain is mostly in my legs and it's like a deep like bone pain that like it would just wake me up and stuff at night. Um and so eventually I decided to do a pain meant to help control it just to improve my quality of life. So that kind of helps with any fluctuations. But sometimes like that medicine doesn't even touch it. Yeah. Yeah, I got to look more into this thing. I just heard about this other, so people say PMS not PMS, it's like P. M. D. D. Or something. Oh yeah, I heard of that. And then it was some random podcast I was listening to and they said that in a specific week of their cycle, they take serotonin or something. Like, well what I need to look into this and it makes it matter. And like, I mean you having like a nutrition background to what's, what I've been seeing, a lot of, it's like, okay, the months or the weeks leading up to your period or any flare ups or anything like that.

You know exactly which nutrients you should be taking in. So in your food, this is gonna be the menu for the week, this is gonna be the menu for um your last day of your cycle. You know, I want to kind of start learning how to do that because your symptoms will be different. It will lessen. Yeah, I'm with you there. There's definitely some things that I'll just look at and be like, hmm, I feel like this isn't gonna sit right? Yeah. And you avoid it. And there's the, and there are things that you're different. There are things that your body crave to when you're on your period. Like, oh, you're lacking in iron. Okay. I'm craving. This makes sense If I just understand my body a little bit more, I know how to, not necessarily prevent it, but you know, less than the simple help it alone. Yeah. What it's asking for. Mm hmm. I'm with you on that one. Bodies are interesting things. I just seriously go like hardcore on, uh, like beet juice and yogurt. Uh, and then, and it will be a certain time when I look at yogurt, I'm just like, disgusting.

Yeah. Like two weeks later I'm like, I need this right now. Be just uh, there might be times where yogurt is literally spoiling in my fridge and then other times where I don't have enough. Yeah. And it's probably what you, I don't know, it's interesting. It's probably that. Yeah. Yeah. You got to track it. I started using, um, this app called p tracker. So it tracks your period and your flow. I'm Just trying to find a good one. Yeah. P tracker. And you kind of, you log every month, um, when you get it, when you stop it, what your symptoms are if you want to. And then if you're trying to um conceive, it tells you when you're most fertile when to be sensual. Things like that. Yeah. I'm trying to find a good app. Some of them are kind of buggy pinky track. I'm gonna look into that one. I think the last, latest one I'm trying is eve but I haven't figured out. Oh, I've heard of that little confusing for me. Yeah. So if you like merge that with some sort of nutrition app or just like a diary and start logging what you're eating during those times those weeks, it might be a hole.

That sounds like a good experiment. I'm gonna try it. That sounds like a good experiment for real. I'm intrigued anyways before we continue about that. Um, Is there anything that, I mean, we talked about a lot and I think we had a great talk. But is there anything that you're like, should I got to say this, get this off my chest or any topic? I don't think so. I mean, yeah, I think over the years I've learned about the importance of listening to your body and then also like just falling in love with like the journey and the process that is chronic illness and life and fitness and everything in general. Like it's not be striving for a destination, but to enjoy the ride. Hmm bars bars and put that on a shirt. It's always a process. This is true. Where can folks find you? What's, what are your hand? We know your handles. They don't know. It's sl Selvaggio on instagram and Tiktok.

So S L S A L V A G G I O. Um, and I'm working on a website, but that will be Samantha Selvaggio dot com, but it's not ready yet. Mm Yeah, I noticed your email. I'm like, damn girl trying to get official get again. That's awesome. Yeah, I see it. It's work. It's labor. Yeah. Again, when you're doing something you want to do not because you have to do it because you're like, I gotta pay these bills. You're like, you know what? I like this and I can make money off of it totally. And I mean ultimately I'd like to be able to create a community for like other people with chronic illness so that we can all talk to each other and complain about health insurance and not feel alone. Yeah, I think soon too. I mean, this is just the beginning. We're so excited for your venture. Um, but we can probably start talking about how since your CPT, especially we can start incorporating, I don't know, some, some classes, some, um, programming for disabled girls who lift and do some sort of a partnership whenever you're ready.

So cool. Yeah. Are you ready? Yeah, we could have some fun, definitely. Lots of people that need support out there in the world. Lovely, lovely. All right. So you know where to find good old Sam. You know where to find us. Um, and uh, you know, it's a great way to stay in shape disabled girls out. Thank you. Bye.

E52: Fitness with Chronic Illness (Sam Salvaggio)
E52: Fitness with Chronic Illness (Sam Salvaggio)
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