this is disabled girls who lift. We are reclaiming what's rightfully ours. One podcast at a time. It's mary Beth Chloe and Marcia bringing you the thoughts and unpopular topics to get you out of that? A bliss comfort zone. Mm hmm. Hello? Hello guys, welcome back. Here. It is disabled girls who lived yet again. We are here, still existing, still thriving sort of in a way, breathing whatever. Today we are going to talk in depth with somebody from our previous episode of panel of spoon. Another process, bitch. Andrea. As usual, my name is Marsha. I'm from south florida, marybeth, from California. We are so excited to bring back Andrea Graham who if you listen to a few episodes back, we had her for the panel of spoons. She has come in from Melbourne florida. We're going to talk a little bit about her story, dive deep into her history with her invisible illness. What what it's like to home school a few kids um and you know the juggling all the diagnosis behind that.

So welcome back Andrea Hello, Hello, thank you for having me again. So, I think the last time we touched on more about obviously the pandemic that we're in and and we didn't really get into anyone stories further than that. So, of the panel crescendo and Christy have both been on the show. So we know something about them, but we don't know anything about you. Who are you? What do you want? People to know? What's where we're going first. What's the first stop on the Andrea tour. Oh man. uh well I'm Andrea, I am 33 and I got sick when I was 18. I kind of came out of nowhere I had some issues throughout high school. Random random things stomach issues, breathing issues didn't really know what was happening. But I went to college and it got worse and around that time I started seeing doctor after doctor after doctor and they kept telling me it was anxiety or I was homesick or oh I'm just partying too much because I was in college at the time and I got the run around because I didn't have an advocate there to be with me at my doctor appointments and I was diagnosed with N.

C. S. At the time. But Later on it wasn't until I was 25. So years years later that I got my actual pots diagnosis. And from there unraveled a bunch of other diagnosis is since then are we still on one hand you need two hands to count by now definitely two hands yikes yikes. And I mean even if they're not they might not all be technically um like the same type of thing but people who have chronic illnesses. No but what most regular quote unquote regular folks might not know is like once you have one like like that's not going to be it let's be honest. Yeah definitely when I got diagnosed N. C. S. I thought that okay that was the one thing that's it. We're going to be able to treat this and then you know things got worse. Didn't get better. And then I got diagnosed with pots. Okay. Okay we can treat this too. And then yeah it just spiraled out of control. One thing after another mass cell and A. D. S. And I mean so many things neuropathy and just the list just goes on and on and on.

At what point did you become a mother? Because you have, Yes I have a six year old and an almost eight year old. Um actually 25. So when I got diagnosed with pots was actually when I was pregnant with my first child I started having seizures while convulsions I guess I just call them um Dystonia convulsions during my pregnancy. And everything just followed downhill very very fast when I got pregnant. Um I was, my license was taken away and I had to be babysat my entire pregnancy. I couldn't I couldn't walk. I was wheelchair bound and then I was hoping that after the pregnancy things would get better and they did not and they just never got better. And then I had another child you know even though the doctor said don't you know I did and again it just never got better and I actually got a lot worse around 2015 is when it got At its worst point I actually end up getting septic for different times between 2015 and 2018 as you know when you have pots or any chronic illness, when you get sick with something more severe, it's so much harder to come back from.

So your first pregnancy that something's really started getting going downhill. And then the second one um did that also change? Things are still kind of like my kids are too far apart in age so I didn't get myself or my body really too much time to recover from the first one. So the second one, it went about the same as the first one. I still have the same issues. I actually ended up having more issues with the 2nd 1. a lot of random issues like Swollen kidneys and blood clots and things of that nature. So actually ended up having to be induced with both pregnancies. But the second one, my son and I both got stuck in the hospital for a couple of weeks after the birth due to complications on both ends. So it was rough and then I did attempt to nurse again after that but couldn't keep any of my nutrients and the more I nursed the sicker I got. So I ended up quitting nursing which I felt very sad about but I had to take care of myself. So now at six today I feel like they're at an age where they can understand kind of what you're going through that you do have some sort of chronic illness and have they adapted with you as your kids or are they kind of not aware of all of this?

I've been very open with my Children since the very beginning about everything in general in life, but with my sickness especially, um I think I actually kind of joke about it because my kids are so, so independent at this point, like my daughter, she brings me coffee every morning, she makes it brings it to me, she's seven years old, you know, and and they do a lot of extra things around the house and they helped me all the time and I, I feel bad sometimes I feel guilty, but at the same time I feel like because I'm sick because I've had to ask them, you know, can you please turn off the light, can you do this? Can you do that from when I'm just laying in bed, you know, I feel like even though I feel guilt about that and like, oh, I'm a burden, I also feel like they're understanding more at such a young age and they're becoming more compassionate and empathetic toward people with disabilities, you know, and they get they get to see me both in a wheelchair when we go to, you know, a park or a mall and then they get to see me wrestling with them and doing Strongman. And so they get to see, you know, that a sick person doesn't always look sick and so I think it's actually been really beneficial to them for when they get older, when they interact with other people who have disabilities that may not be visible.

Oh my God, totally. And don't ever feel bad for, you know, teaching your kids at such a young age, things that some of us never even saw until The age of 25, 30, 40 years old because some people still don't know exactly, you know, we've got Vanessa cans who, who talks about how her daughter backs her up at school. When people ask about why she's in a wheelchair and backs her up in grocery stores. When people are condescending to her, she just is able to understand at such a young age that there are others like us, you're Creating like, like a new wave of people that treat everyone as humans. So that exposure, yeah. Little people is um like Kim mentioned on her episode two and I think her son is around the same age as your kids and he's the one waking up early with her and showing her okay, this is where the barbell is mom, this is where that is mom and like, imagine that alright, she's blind, okay. It took her some time to accept it. Alright, fuck. But at the same time, like her kids right there with her and she wouldn't have had that experience without it and he wouldn't have had that experience without it.

So now they're both kind of growing through it together. So I think instead of saying that you're the burden and that you should feel any type of way, you just see it as like this person you created is your person. They're an extension of you and you guys are both growing together on something. Exactly. I think that, you know, we all assume that we're going to become parents, we're going to have this specific life, we're going to, we're going to have this perfect family and we're gonna be able to do all the things that, you know, we envision doing with our Children and you know, run around and play soccer with them and do this and the wrestle with them and there was definitely a part where even still, I still have moments now, but where, you know, I get sad, I'm like, okay, I don't get to do the things that I envisioned myself as a parent doing, I don't get to run around and be soccer mom, you know, I don't get to do those things, but at the same time it's really, really made me sit back and appreciate a lot of things that I don't think other parents, healthy parents get to appreciate Because you know, when I'm laying in bed and they come and they cuddle with me or we read a book together or whatever it may be, we play a board game, I am in that moment, I am fully 100% in that moment where, I don't.

I feel like I'd be in that moment if I was a healthy individual and I got to do these other things with my kids. So I just get to see a different side of things and it's taken a while to accept it. But I think I'm finally at that point where I'm accepting it and I'm able to really appreciate the moments that do matter, you know, that that I can be a part of and it's not gonna be a you're gonna flip a switch and be like, all right, I'm good now, you're gonna have that constant struggle. Um But I think what you're saying too is like if you think about your own childhood, I don't know how everyone else's or kids that you see now, like, I mean these kids are just getting thrown ipads and they're like, alright later kids or you know how many people are struggling paycheck to paycheck and all they're doing is working all their jobs and the kids are raising themselves. So, I mean, in all of these circumstances, even though it might not be a disability or an illness keeping them from spending the time they want with their kids, something is right. I actually part of me actually, you know, I hate to say because it sounds really strange to say, but part of me feels lucky to be sick sometimes because I do get to stay home with them and get extra time with them and see them in a different light than I normally would and you know obviously I would change everything to not be sick for the rest of your life but it just it really does put a different perspective on being a parent.

We'll talk to us a little bit about homeschooling and how you've started that you know that life and that lifestyle for your kids and yourselves and how has that worked for you for the last eight years? Well um it's actually been amazing. I I always wanted to home school, I actually never knew anybody that was homeschooled or that homeschooled and when I had kids I just knew that that's what I wanted to do. I felt in my heart that was what was right but I actually put my daughter in public BBK initially but I already had the intentions of homeschooling for kindergarten. I just wanted her to understand what schooling was and the whole concept of it but we ended up going to V. P. K. And then about halfway through the year I just honestly it was so much pressure not only for her but for me like getting up every single morning that routine and you know fighting with my my kids every single morning to get ready to go and then coming home and fighting with them to do the homework and it was just so overwhelming to me and it was stressing me out and I was getting sicker and sicker and then on top of that she was constantly bringing germs home every day.

I mean it was a vicious cycle of germs in my house. Yeah but so she would bring it home that my son would get it then I would get it and it was literally year round sickness. So finally I was just like I can't take this anymore and I started home schooling and literally the day we stopped going to V. P. K. We stopped getting sick we stopped getting sick. It was like a miracle that the germs just stopped coming and I mean we still go out obviously and we socialize and we go to home school activities and classes but I think being around the same kids who are constantly spreading germs in a circle every single day has has helped my health. And the stress of not having to be on someone else's schedule has also made a huge difference. We're able to you know I'm able to wake up in the morning and I don't have a very rigid homeschool schedule, I'm very laid back when it comes to it. A lot of you know everybody home schools differently. Some people have very strict, we sit down from this hour to this hour but because of my situation because I'm sick you know I I wake up and I'm like you know if I'm not feeling well we'll just do this tomorrow you know and I can take as much time off as I need to and just for example right now with with everything that's happening with the pandemic going on, you know it's very stressful and the last thing I need is just added stress.

So we're taking a couple steps back and I'm not stressed about catching up because I don't have to be so it's it's convenient and um I really love it, I love it and there are days and moments where it's stressful, you know I'm with them 24/7, there is no escaping them, there is literally no escape. So you know there's times where I have to come in my bedroom and lock the door and stay in here and you know they can't come after me but it does get overwhelming but I have a lot of friends and support and the community around here is amazing for homeschooling. So there's a lot of support. It's really, it's been amazing honestly. Oh yeah. I mean there's a lot of parents right now that you could be teaching tons of lessons because they're not used to this. Welcome to the jungle. Welcome to the Jungle. What do we create a syllabus for my child? Do you still get them on the same schedule? Like Oh get up at 7:00 AM and get ready. So they feel as though they, you know are going to school as opposed to just you know having breakfast and learning about math at this point right now at their ages, I have not been doing that.

My daughter actually gets up at like six o'clock every morning and there's no way I can do that. So my son, my son, he gets up a little bit later, so I usually open my eyes around 77 30 but we don't actually get up and get moving till 9, 10 o'clock in the morning. It's very, very um flexible right now. But as they get older, I think things will become more, you know in place, as far as the schedule comes because they do need that, they do need to learn regimen and schedule, but right now this is just what works best for us, especially with everything going on. And I've been recovering from a lot of things, you know, a lot of trauma and so because of their ages, I've just taken, taking a step back and said there's no reason to I need to force this this and this right now while I'm recovering from, you know, an abusive relationship and sicknesses and stuff like that? So, and as far as when you are able to recover and train, are they a part of that or are they separate from that? Is that do they get like pE or what are they doing for fitness?

Are they with you or is that separate? We do everything together, which is great. Um but they do have their separate pE as well where they have the homeschool community pE classes in town. So they usually go to that right now, that's closed down, but we usually do that. Um but whenever I trained for Strongman, they're out there with me there in the garage, They're they're begging me to tell them how to, how to lift this, how to lift that and they're picking up all the weights when I'm telling them not to. But yeah, we did everything together. They had a little jeep, you know, what's it called, like with the battery? What do they call power? Well, they actually, when they first got it before they even wanted to ride in it, they asked me if they could pull it like mommy does. So sure enough I put a harness on them and it's somewhere on my instagram. I actually posted it, but they pull their pole and the jeeps with each other in them and it was just, it was such a that day, I'll never actually forget because it was just a moment in my mind that I'm like, you know, wow, they're really watching, you know, they're really paying attention and they want to do this, they're not, I'm not doing, I'm not sending them on the street to pull their jeep for punishment.

My neighbors might be thinking that though. Yeah, they might not get it. So do you think you like you as a parent or them as your Children? You know, going out into the real world, have they been experiencing or hearing of any stereotypes as homeschooled kids because you know, we met a few of them in college or high school Um and they're always seen as though the weird kid who never got to interact with 30 or 30 other kids, but obviously it's for a good reason. Yeah, absolutely, I get it all the time, you know, especially when I first started, when I first started, it was a lot from my family, they were very nervous, you know, especially my older generation, my grandparents etcetera. They would what about the socialization? That's always the first question, but that's just because that's what everybody automatically thinks as soon as they hear homeschooling, they think my socialization issues, but the community that I live in is there's so many homeschoolers, we have, every single community center in every single county has homeschool classes, they have pe classes, art classes, life skills classes, there's events for homeschoolers all the time.

So the socialization is not an issue at all, but I do get that, and especially because um one of my Children has sensory processing disorder and um social anxiety. So basically, basically, I I call her selective mute, so, you know, you have selective hearing. Well, she has selective mutism, so she won't speak to anybody unless she wants to or once she's known them for about a year then she might start speaking to them and so, but then on the other hand, I have another child who is completely opposite. He's super friendly, he wants to meet everybody. But even though they're so opposite, I still get, oh well she liked this because she's homeschooled. No, no, no, you know, I'm actually homeschooling her because of her, you know those issues, that's one of the reasons I choose to homeschool her, you know, and if that was the reason my son wouldn't be over here completely opposite, you know? But I do, I do get the stereotypes a lot, especially because she is the way she is and so it's hard, it's hard to explain to people that that's not why she's the way she is, but we do get that here and there.

But the community that's, that's in my county is just amazing to be honest. And what do you say to the beside the stereotype of how the kids are the other old school idea that, oh well you have to be sitting down for five hours straight and be productive and that's how we learn. Well, I know that as as a child myself for when I was in school, I felt like I was just constantly being taught just to take tests and I didn't want my kids to learn just to have to take tests. So I actually don't even test my Children. I mean they have quizzes here and there on the computer and stuff, but they don't get tested at the end of the year. Like most students do and I actually really love that because they're not just memorizing things. They're learning them because they want to learn them. So I asked them, what do you want to learn about this month? Of course we're going to do the basics, the math in english the writing. But what do you want to learn about this month? And they'll say, oh, I want to learn about the planets or I want to learn about how flowers grow and I'll spend a whole month and we'll do our unit topic just on what they want to learn because they want to learn about it.

They will sit down, they will sit down for those hours and write about it and read about it and and watch videos about it. But you know, if I was forcing a topic that they didn't have interest in, you know, they wouldn't want to sit there and I just, I couldn't force it, I couldn't, I'm, I'm very, I really like the idea of getting to know what they're interested in. You know, I'd like them to be able to find out what it is they want to do with their lives without somebody else telling them, hey, you should do this with your life or you know, my best friend wants to be this when she grows up. So, so do I, you know, I really get to see what they're interested in and what they may want to pursue in the future. Yeah that's awesome and to me that makes a lot of sense because I see kids for physical therapy and the kids that like you can't just walk up to a kid and be like alright kid hit the ground, let's do 10 push ups, 10 setups like no you get to know like alright this girl likes to listen to row your boat, that's how we're gonna start every okay this kid loves throwing a football, we're gonna bribe him with the football and when you get to what they want to do and you make it fun and you make it interesting and like okay next thing you know because that wasn't walking is walking now because you figured out he loves the shift out of bean bags.

Well that's the thing like my daughter for example was not interested in learning to read and when she went to V. P. K. She was only four and they were trying to get them to learn how to read when when they were 44 years old and I'm like I just don't see the need to force it to push it to the point to where the kids are crying and it's a it's literally a battle every single day when they're going to learn this. This is a life skill that it's going to come regardless is if if I sit down and teach you and so I didn't really force it and I would here and there and bring it up and we try and if she, if it was a problem, we bite back off again. And sure enough she turned seven and boom mom, what does that sign say? What does that sign say? What does this say in this book? And I'm like, I don't know you tell me. So she would start getting frustrated because I wouldn't tell her the answer and that made her want to learn. And so now she's, she's going to be eight and she can read just fine and her brother who is younger than her can read at the same level as her because he wants to keep up with her.

So yeah, that's honestly beautiful and I really appreciate you know, your style and Mhm letting them learn at their own pace because obviously right now there is a community trying to cancel grades, you know, trying to cancel testing and when I think back to my school it was very militarized. Like I grew up in an underprivileged community where we had to go through metal detectors sometimes or there were security guards and police officers going around checking lockers at random times of the day. Do you want to feel like you're going to prison every single day and then insane. Oh my God and then have teachers like not believe in you because you look a certain way like there are so many issues with public education or just education in general, they just, they expect you to all the students to learn in the same style and everybody has a different way of learning, some people are visual, some people are hands on, you know, some people are audio and you can't go into a classroom and expect every child to learn the same way.

It's just, it's hard and that's how kids drop out and that's how people, you know, kids don't passed their tests and they get frustrated and they cry and I just, I don't feel that that's right and you know, everybody has their own opinion and that's fine and I'm just, I'm lucky that, you know, in florida, it's, it's pretty easy to home school and I feel lucky that I get the opportunity to, to home school, you know, and I'm not saying public school is bad. I think, I think everybody has their own family style. I think this is just what works best for us personally with my daughter's mental issues and with my health issues and then also, you know, just in general, my, my thought on, on public school and I think you can choose probably you have more freedom to give them whatever truth is your truth, you know, like at me as a 31 year old now learning about things like, oh the FBI just said what martin Luther king, like, you know, like all this ship wouldn't wait.

What? Yeah, I'm not gonna lie. Like I learned so much homeschooling my Children, we watched so many youtube videos and I'm like he did that person did that, oh that's who invented that. Like I'm learning just along with them and it's it's actually really fun because I know that at some point I learned all of this at some point, I learned all of this to take a test, but like I said, I learned it for the test and so it went, I went away, I'm actually having both of my kids um create a journal right now, they're doing they're doing it via video and pictures, so they're doing a video and picture journal of of the quarantine and I told them all about anne frank and that situation and how they were quarantined in an addict right for this amount of time and I was just trying to, you know, I took, I took advantage of our situation as a homeschool teacher or mom and you know everybody, you don't have to have a home school to do this, but you know, I was just like wow, you know, if anne frank hadn't written that diary, you know, we wouldn't have her story and I told my kids that and they're like, oh I want to be able to tell my grandchildren about this thing that's happening right now in the world, so I just think what a great idea, you know that's amazing.

Yeah. And I think you can also um like mary Beth said you don't have to teach them the white man's history. I mean like it's just like last year that I see things about indigenous people and like what's the tribe it was until I got to college that I even learned about really the history of whose land um on or any of that and that's because I happened to take like a random elective, Can you imagine the kind of humans you're creating? We actually just did a topic last month on important people in history and we went through all the, you know, the main important people, Albert, Einstein, alexander, Graham Bell, but then we got to other people and I asked both my Children to choose one person who they were going to do their report on and my daughter chose Maria Maria Tallchief who is a native ballot ballet dancer, she was the first prima ballerina as a native american. And I thought that was really cool that she chose her because in school they would they would just pick one person, you know, they would say okay we're all going to abraham Lincoln.

Exactly, exactly. And so I got to see she wanted to learn about someone who wasn't just this white typical person on a dollar, you know bill? So so how do you carry over? So now you have like a different perspective of how to learn and how to do things. How do you carry that over into how you do your training? How does that work? Rephrase your question? Sure. So like for me, I come from his perspective is like, I've been publishing forever and I'm a physical therapist. So then I get into strong men like, all right, this is how the body works, this is how things go, this is how whatever. So if you're coming into strongman as like, alright people need to learn in different ways. I gotta do move the way my body needs to move. I have an illness like, how did you approach training from that different perspective or did you not at all? No, no. For me personally, um I was I was actually in a wheelchair for a long time before I got into Strongman had just come off of for three rounds at the time of sepsis in 2015 and I was very, very weak.

I was barely hugging £100. I used to be a personal trainer. So fitness used to be in my nature. I actually went to school for exercise science physiology. So, you know, when I got sick, all of that kind of felt like it was just torn away from me. So when um after my third round of sepsis I was like, okay, I've got to get back into into something again, I want to feel like a person again. So I started working out little by little, I was just using the rowing machine, I would do it during commercials and then eventually going to get stronger and stronger. Actually got the rowing machine from a fellow local pots patient who he was bed bound, He used the rowing machine, got got London bound and passed it on to me. So I did the same thing and I actually passed it on to somebody else um in Orlando once I was able to get up and go to the gym and then I just, I met the right people and got into strongman and Well is it six, six months after being in a wheelchair, I did my first strongman competition.

That was the gen Back in 2016. I wanted to say, Okay, I'm going to train this, this and this day, just like you would schedule for school, you know, we're going to do it regimented. But just like it didn't work for schooling. It doesn't really work for strongman with me either. I have to go on how I feel that day if I wake up and I'm just not feeling it okay, we're going to take today's a rest day tomorrow, I'm going to try again and I give myself a rule. My rule is I have to go into the gym regardless of how sick I'm feeling, I have to get in there if I get in there and I still feel really sick and I really just can't do it, then I won't do it. But if I don't at least walk into the gym, You know, I I will feel very guilty for not even trying. So I give myself the rules of at least going there Usually 98% of time. If I go there, it's going down, it's happening. So that rule works really well. Are you getting any programming right now? You're programming yourself? And then you said six months after, you know, being in a wheelchair, Did you compete sitting or standing?

Oh, I I competed standing, everything, tire flips, everything, the log, all of it. Um I I get training um through Dimitar 17. Oh he was, you probably know who that is. If you're a strong man, he was America's strongest man back in 2014 and 2015 I get my train through him and he has been amazing. I used to take salt tablets but not like consistently, but since being trained by, by my trainer now I take them consistently. I take them every day. I take them before. Um and during my training I do a ton of things to prep. Um I have wet rags to keep myself cool. You know, extra fans and lots and lots of extra time in between sets and we take, we take a lot of steps, a lot of steps and as somebody. So I mean I know you and we've talked, but as somebody that doesn't know you did you always have him, what were you doing leading up to your first comp what happened from then to now?

So no, I actually didn't know him right away. Um I was being trained by an ex boyfriend at the time um while I wasn't really being trained by him, I was training with him or so and um when things didn't work out with him, I was actually just weeks away from my from a competition and one of the events was the circus dumbbell and I had never done it before and I was on my own at this point I had nobody to to reach out to. So I just I wrote him a message and I was like he actually held the world record for that specific event, the circus dumbbell. So I reached out to him being that he was in Orlando and I was like can you just help me with this one event, I just need advice on this one thing, I don't have anybody. And he basically just took me under his wing from that day on. And it started off with the one event and then it led to four years of well three I guess of of him being my trainer and being one of my best friends to be honest. And as far as like researching your illness and whatever, he's doing that just of his own accord, he just said like what you got going on, I'm gonna look this up.

Yes. He's he is always researching and that's one of the things that has kept me. So uh appreciative of him to be honest. Like he he's constantly researching. He's he's always giving me ideas of what I could do possibly to, you know, try this. Have you tried that? You know? And he's always on me about my water and taking my sodium intake and my food intake especially um I sent him like so my clips like that I post on instagram usually cut out at the like right when I drop whatever it is I'm doing. But the the clips I sent him have have me passing out, they have me blacking out, you know, they have the end the things that a lot of people don't see on instagram he gets to see. So he is able to take that and work with that and to be able to adapt my programs and that's that's what I was going to ask too. So I'm glad you mentioned it because you know, I mean, I've heard Marcia talked about her training and her competing a few times, but I'm still learning like how do you what are what are some signs for you that that tell you like, hey, I've got to stop what I'm doing now or else I'm gonna pass out or I'm gonna I'm gonna black out and I need to stop.

Well I'd like to actually say I've perfected the standing blackout. That's like my, I call that my talent to be honest. So you know, I've done that once with two hours of sleep, but obviously different. It takes a lot for me to actually say, okay, I can't, I'm not gonna do anything because I think more so it's just that I'm really fucking stubborn. I mean at the end of the day, I'm just really, really stubborn. But a lot of times I'll be doing pull ups or the log the log gets me really bad or stones and for example, I'll get too, although the log, you know, you have to clean it when you clean it. That's probably the number one worst thing a person with my disorder could do because you're going, you're bringing your heart from down below two. Up above really fast. And so usually by the time I have the log on my chest, I'm I'm fully blacked out at that point. So you can actually, if you really pay close attention to my videos, you can see I pause like I'm not right away. I can't, I can't right away press the log, I have to sit there, I have to let it pass. Usually what happens is about 20 seconds or so of of me blacking out where I'm able to somehow magically stay on my feet.

Um Now I can't say that always happens. I I passed out often as well, but I blacked out. So no. Yeah, well it is, I black out. Yeah, I do black out probably every single time I used the log press and same with pull ups usually pull ups. I used to only be able to do like half of a pull up and I would completely pass out, like hit the ground, pass out. And then I was able to slowly get up to actually doing 18 pull ups in a row. But I would still black out in the middle. But you'd see me just hanging there. I would literally just be hanging there and then as soon as it would pass my body would be much weaker. So I could only do a couple more reps after. Same with the log. So as soon as I get it up on my chest, I black out and I get weaker. So my press isn't going to be very strong and it's it's very very frustrating. It's because I have yet to find anything to fix those issues. Um You know, I've gotten better like, you know, as far as the pull ups for example, I went from half a pull up to 18 and only blacking out one or two times in the mix. But there's some things I still can't really get past and it's very frustrating but I'm going to keep trying.

But there are days and there are times where my body just says no fuck this stop and I just can't. So there's days where I'll go out and I'll try and you know, I can't even get up without completely passing out and on those days I I I let my, my illness take over instead of my stubbornness, but it just depends and it depends on where I am stubborn wise and where I am physically Yeah, I mean, I'm just imagining though that amazing grip strength, you might have to hold On to the pull up bar after passing out one or 2 times, I don't know, I just, you know, it's really sad to be honest, it's sad that, that I'm able to say I'm used to it, I don't, you know, it's a really sad thing to be able to say, I'm used to getting up and blacking out, but I black out on a daily basis 15 to 20 times just from getting out of my bed to go get water. By the time I'm in the kitchen, I'm blacked out, I'm holding onto the wall, but I'm just so used to it, unfortunately that I honestly don't even know what it would feel like to be able to jump out of bed and not have that feeling, you know, so as much as it's awesome talent to have, it's sad, it's sad, I shouldn't have to be used to that, Well, I'm sure you're not alone, I'm sure 80% of the people listening to the podcast right now Marcia's like, yep, yep, I know how that feels, you know, you are not the only one and it's just the way that some of us have to adapt.

Like I've lived my life only using one hand well, and people like you, Marsha, who you don't have an actual diagnosis, you know, you have all these symptoms, you know, it's so, it's probably so much harder even for you to deal with that fighting. I remember just fighting for a diagnosis, I was just, everybody's like, well, why is it so important that you get a diagnosis? And I just feel like fighting for a diagnosis is important because it's, it's a precursor for treatment, you know, and if you go years with undiagnosed, being undiagnosed, there could be consequences in the future. And it's scary, I think it's even more scary to be undiagnosed and, and to be doing Strongman on top of that, you know, you don't know, you have the I have the fear, I have the fear of, you know, having having pots and having all these other issues that, oh, what if, you know what if my heart just stops while I'm doing Strongman one day because maybe I haven't been diagnosed properly or maybe they, they're missing something. So I can't imagine how scary it would be to be undiagnosed and to be doing a sports like Strongman, you know, and, and I'd be so afraid every time that I'm working out that something's going to happen.

Yeah, no, it is, it is pretty wild and there's nobody that can really understand what's happening unless you have this happening to you. But, I mean, as far as actual fear when it comes to training, I don't exactly have it. I do have, like, dread and anxiety when it comes to, like, log days or squatting is like, I don't even know where I go when I squat. Like, like, when it comes to those days, I'm like, oh, here we go. Um, but as far as, like, actual fear, I don't have fear, but I do have, you know, like, oh, today I have this weird rash. So today I was in the sun, I get really tired. Oh, today, I, my stomach is, like, sucking three times its size. Like, you know, like, I have that every day, like, okay, well, am I gonna have lupus by the end of this year? Who knows? Like, maybe I will have that. MS in 10 years. Who knows? Like, those thoughts are always, like, present. Having, having a diagnosis is definitely, definitely helpful, you know, when you're treating and you're managing your symptoms, but, but even being undiagnosed, I mean, you're still doing essentially the same thing, like, with, with, especially with the diagnosis, like, I have, you know, the symptoms, are you just, they call it a snow a symptom snowball, because there's just so many symptoms.

And so you're just managing them. So, even though, you know, there's no cure, there's no, there's no actual one treatment. So it's really, it's not too much different from being missed or being undiagnosed except for the fear I feel. Yeah. I mean, a lot of those symptoms overlap, right? Yeah. Yeah. I mean, I think the biggest thing about when, why I was looking for a diagnosis, because I do understand, like, I'm not going to walk around and say, like, who cares? Um, obviously you will care because there are some things where it's like, okay, like, if you have besets, like, you could go blind or like, you know, they're like, there's some things that are, like, if you have this, then that could have been like, that's a concern. But then there's also people that need the diagnosis because without it, they're not gonna be able to get disability benefits or without it, they're not gonna be able to get accommodations. So, like, I will acknowledge that I'm lucky that I don't need those things. I work for myself. I set my own schedule and I'm like, in a kind of like, I've created, like I mentioned realities before. Like, I've constructed my own reality. We're not being diagnosed exist and like, I'm now okay. But when I wasn't okay, I was clinging onto the idea that number one a doctor was going to save me and give me a diagnosis and number two, that diagnosis was going to be a cut and dry, like, oh, you have this, then you need this.

Here you go, bing, bam boom done. I was definitely gonna mention that to depending on what your employment's like what your health care and like how you deal with healthcare and just everywhere you go, honestly, if you're a student and you need accommodations, um you will have to get that and you have to have, you have to go through that gate keeping things be like, look, see somebody said I did. So please believe me. Like I don't I don't have to go through that on top of that. Even being undiagnosed, I feel like you already have an invisible illness, right? So like I'm diagnosed but it's invisible but Euron diagnosed and it's invisible. So that's got to be even more of a basically what a stigma against you where you know, you're telling people you're sick and you don't look sick, but you also don't have a diagnosis, You know? Yeah. And it doesn't help because I mean I'm gonna be honest with you. People don't expect to see me. Like I don't, I look, I look like a healthy weight. I look like I can lift some weights. Nobody like historically speaking black women are shipped on in healthcare anyway, women are shipped on in health care anyway, so I'm like shoot on twice as much like that's a big pile of shit pile of ship and after a while I'm just like, you know what, this is actually not helping me.

I mean it's, it's like to the point where I would see some doctors, like it's 50 50 asshole or not and the ones that aren't assholes would be like, like, are you okay right now? Like you look like you're not doing okay. And I'll be like, yeah, because 50% of these experiences are assessed and they were like, we don't have enough toilet paper going around for all of this. I know you don't, And you know, like 50 too. So it really sucks. It really sucks. But I mean, and not to say that I haven't done anything doesn't mean I haven't done anything. It just means that like unless something new or strange pops up. Like I'm not, I'm not seeing anybody and nobody's managing any medication for me because they don't know what to do anyway. Um, but like I've been tested to hell the high water, like everything there is, you know, cat scans, MRI's spinal taps, genetic testing, like all of that. And I've been lucky to have insurance. That's mostly paid for that in the beginning. I didn't, and that sucks towards the end that I did.

So like I know that I don't have, you know, some sort of crazy atrophy or dystrophy disorder wherein two years, like I won't be able to breathe. Like, I know I don't have most of what people know is like immediately fatal. So that kind of fear is gone. And then the idea that a doctor is going to figure out what's wrong with me and fix me. Like I lived through there, that shouldn't happen. So that, well, I'm happy to hear that because even though I'm diagnosed, I still have those fears. I still, and I've had every test under, I've had genetic testing and all of that as well and I've gotten answers and you know, I've had certain things ruled out, but I don't know, I still have that fear all the time when I, when my chest starts hurting or you know, just I have symptoms that just are a little bit more extreme than usual. I just get instant anxiety. Oh my gosh, what if they don't know what if you know what if they missed this? But I like you. I've gone through so much testing, but I, I don't know, I still have that fear and I'm not really sure what to do with it.

Yeah, I mean, as far as I, like if I'm, if something's gonna happen to me, like it's gonna full blown happen and until I hit that point, nobody's got it and that's kind of where I'm at like, okay, like maybe in a couple of years I'll have some, some capital letter diagnosis, but like until then I'm just going to keep thriving. Like, nobody's going to figure this out anyway. I used to joke and it's really not a funny joke, but I actually shouldn't say used to because I still do, but I say that, you know, they're gonna figure out what's wrong with me when they do my autopsy. Yeah, and that's a really, really horrible thing to say. But that's what I that's how I feel sometimes. Like it's going to take that to happen for them to be like, oh, this is what it was all along. Yeah, very more morbid thing to say. But I hear that I still have, is that if I get pregnant and carry a pregnancy, like, what will happen? That's my only real and true fear because in most cases of autoimmune or chronic illnesses, like your pregnancy may or may not go to ship, but definitely after you have the kid, like, and your body is all out of whack stuff pops.

Absolutely. Because well, did you have that fear when you had your first child? Andrea so there wasn't very much research out on my condition with pregnancy when I first got pregnant. Um So doctors weren't really saying one way or the other when I got first, they actually were kind of in leading toward if you get pregnant, you're going to do better because you have more blood volume and one of my conditions is type of bulimia, which is low blood volume. So everybody was like, oh, you should start feeling better. But unfortunately, everybody is just not the same. And um like, like Marsha, I was very manageable before I got pregnant. I went what, I don't know, eight years where all I was doing was taking one pill to raise my blood pressure. And I was taking that three times a day and I was working a full time job outside walking up and down stairs by the beach, I was a waitress and I was fine. I was surfing, I was having fun and um it was manageable. And then, yeah, as soon as I got pregnant, it didn't go the way doctors thought it would go and the research thought it would go. And since then, now, you know, my my Children are six and almost eight, there's been a lot more research.

Some people are like, oh, I've got better when I got pregnant. And I haven't really had pots symptoms since then. And some people say, you know the same as my situation where it got worse and it hasn't gotten better. So I don't think it's the same for everybody. I think it's different for everybody and I wish that I could go back to where it was just manageable with that one pill a day. Unfortunately, I don't think I'll get there again. You know, I hope that I do, but I've been getting I. V fluids now for eight years since I got pregnant, I started getting I. V fluids. And that's one of those things that they don't tell you. But once you start getting that you're pretty much going to be getting that for the rest of your life. That's one of those things that's very hard to come off of. You know, it's not a narcotic, it's just fluids but your body gets so adapt to it. And eight years is a very long time. I've had I've had three ports in the time and I can't get another porter because Ive had sepsis four times, not from the ports, but when you get septic they have to take the port out regardless of where it came from. And my doctor has literally, my cardiologist looked at me in my face and said you cannot get another poor if you get a report you will die so I can get another report.

But I still have to get these infusions. So now I'm just getting stuck with Ivs every two weeks. And um it's scary to think, okay what happens when my veins don't work anymore? What happens? You know, they stopped working not too long ago and I I literally had to just take a rest from my infusions and I got very sick for a couple of months and but my veins kind of healed and I was able to start getting them again. But it's very scary you know to be on medicine that at some point either my body's just going to start rejecting or I'm on another medication it's a heart failure medication and I've been getting samples from my doctor's office for a year and a half now because my insurance doesn't cover it. So at any point in time my doctors could just not have those samples anymore. So I'm really, really relying on things, you know, my body, my veins to keep working and the doctor's office to keep carrying this medicine and keep giving me samples. And it's very scary to know that one day I could wake up and you know, my medicine can be gone. And so I'd really like to be able to work my way to weaning off of a lot of the medication I'm on into leaning off the fluids.

But, and I'm trying, I just don't know if that's possible at this point. You've got a strong body, your body has been through a lot, your mind has been through a lot because imagine, you know, the mental health aspect of all of this. So, um what's great is I've been hearing some people using obviously a lot of other organic methods to kind of wean off of some Western medicine. So yeah, I definitely tried a lot of um, natural things as well. You know, I've tried floating in the, you know, the sort of the the solar floats where you float on this. I, you know, I tried going to salt caves where you sit in there and you inhale the salt. Um I've tried a lot of like I've tried a lot of little things, you know, meditation and um I forgot what it's called tapping therapy where you like literally are tapping your face and stuff and I've literally tried it all, but hopefully there'll be, there'll be something out there. I just know it and as far as where you're at now with stress and training and like what, what are you doing as of this month?

This week? Um, it's been very hard. Honestly, I'll be, I'll be straight up, it's been working hard lately, especially with the virus. And I've been really backing off social media because there's just so much misleading information and people who are very ignorant, healthy. You know, a lot of healthier people who are ignorant and saying, you know, just the elderly needs to worry or, or even some of them who say immune compromise need to worry. But even the governor in florida himself, I was watching a conference, I believe it was yesterday and he said, well if you're older, if you're immune compromised and you just need to stay home. And I'm just thinking, well, what, what is that? Like what does that mean for for people like me who have to stay home and you're letting everybody else run around the streets and it's just so I just have to stay home and let the sickness continue to spread like that's not fair to those of us who, you know are immune compromised or or the older people, you know they're not he wasn't taking it seriously and he was like, you know, so if you're healthy you can be out and about but with this virus in particular they don't, you don't know if you're carrying it, you know, you might not even get it but you can still be a vector to somebody else.

You know? And it's it's been very stressful and that's how it works. And you're infecting grocery stores, you're infecting banks everywhere. That's public for some of you that don't know. Andrews County is the only one probably in the U. S. But the only one in florida the only one in florida that hasn't you know abided by the shelter in place. And it's it's stressing the ship out of her and her household. Your parks are still full. Um The parks have most of our parks have closed down thankfully but all our beaches are still open and there you know the restaurants they're open but for delivery but we have hair salons that are open and nail salons and spas that are open. Yeah problems. I mean mine are suffering but you know it's for a good reason. Yeah you know it's hard because my kids are, you know they're asking, you know well how come other people are allowed to go out, how come they get to go to the park still, you know and it makes me feel very guilty as a parent.

You know, and I'm like, well listen, unfortunately the government is not doing what they need to do. So at this point I have to do what's right for me and my health and what's right for our family. And you know, it's very hard because I feel very guilty for my Children. You know, we've been, we've already been quarantined for two plus weeks and they're just putting this lock down into place or whatever, which isn't even in my county, a full lockdown, but I feel bad because I have to explain to them. I understand it's not fair. You know, your friends get to go to the park still and we don't, but you have to understand that if you want mommy to be healthy, this is the step that we have to take. And it is hard, you know, we live with so much sickness, so much pain and and on top of that now we have to live with the guilt too. And it's hard, it's hard to have that guilt on top of everything else. So the guilt comes from what what do you feel like you're missing? Like what are you, what are you giving them that anybody else could be giving him? You know, it goes back and forth. I have my days where I feel very, I have pity party days where I feel very, very guilty for being sick, but at the end of the day, I'm not choosing to be sick, I have to let go of the guilt, it's not my fault.

I didn't ask for this illness, you know, I still deserve to be happy, we still, you know, I still have a purpose, you know, I'm still loved, but I just, it takes those daily reminders and when my kids get upset just because, you know, I'm sick, unfortunately, we have to sacrifice things sometimes and there's going to be times in their lives where they have to sacrifice things for things as well. It might not be because of an illness that might be because of something else, but I think it's teaching them in the long run and like I said, I get to enjoy other things that, you know, parents might not necessarily focus on and I get the, I get to appreciate those things, you know, but it is, it's very, very guilt ridden and I think we go through phases when you have a chronic illness, so you go through phases of anger and and guilt and sadness and depression and then acceptance and then it kind of just goes round and round and round, I don't think I'm sorry, my cat just jumped up here literally on my keyboard, but I think we we go round and round in the cycle and I don't think that that's gonna end, you know, it's this is a lifelong thing and I think, I think the guilt is always going to be there.

It's just it's just that we have to remind ourselves and our Children just because we can't do everything that a healthy person does doesn't make us less valuable. It doesn't change us as a person and it doesn't reduce our value. You know, it's definitely and then realizing two or for how strict it is right now that it's only temporary. You know, soon enough you're going to get back to going into the parks once. It's safer once it's once people have done their due diligence of staying in the funk home. Exactly. And yeah, and everything else. Yeah. I mean we have to remember and you don't have to apologize for something that's out of our control. You know, at the end of the day, this illness is out of our control, The virus that's going around is out of our control. So we shouldn't have to apologize for it and we just need to understand and accept it and you know, have that pity party but only let it last today, you know, get up the next day and move the puck on. Yeah, there's there's nothing wrong with having those feelings but what you do with it is where the questions pop up.

And I also think that maybe not even just in terms of kids, but just people in general, like, like not to people like to take things personally, you know, and I feel like that distorts a lot of the communication that you have with people around you and people are supporting you or just in your circles or whatever, you know, like the other day like I grilled my brother because he's like oh I'm going here, okay who's gonna be there? Who you gonna be with? Are you wiping this before and over why You have to go there? Do you have to go there? And he's getting testy, He's getting like testy like why is it? And I'm like yo like this is not personal, I'm not saying you're a dirty person, I'm not saying you know like I'm not talking about the heart of your character here. Like I actually got to take care of me, you know? And then once we came back so that it was like all right? Yeah. No, no, like it's it's fine. I'll be careful. It's not a big deal. Okay, cool, cool, cool. Moving on. But you know, you have that same thing with Children, you have the same thing with moms, aunties, whatever, where you're going to have that kind of conversation and you'd be like why the fucky is this person getting upset? It's like because they're not listening to you like they're taking it personal, like you're telling them I'm gonna need this because and they're hearing she thinks I'm a bad person and so there's a lot of that that has to be like awareness that has to be a part of it that you're feeling guilt and you're feeling something, but yeah, the other person's feeling something also and you guys might just be talking about your feelings but not actually talking about your feelings.

I mean even just recently I had a friend asked, you know, can I come use because I have a gym in my garage and since all the gyms are closed, can I come use your gym? I've been, he says, you know, I've been quarantined for about 12 days and it was so hard for me to to respond to it because, you know, in my heart, I'm like, yes, please come use my gym, like of course, but the other side of me, you know, the six side is like, you know what, I've taken my due diligence and I've stayed home for two weeks and I've done all this work, so I I just can't even take the risk of bringing anybody into my house. I don't know if you're quarantine is different than my quarantine. You know, my quarantine means I don't leave the house. Does your quarantine mean you're going shopping still you're going out? What is your you know, everybody is different and I just can't risk that and it was very hard for me to tell my my very close friend No, you can't come over, you know, because I felt guilty, but at the same time I have to remember and he has to remember, you know that I'm just looking out for myself and my own health and you know, as a healthy person, like luckily he's very understanding friend and, and didn't take it personal, you know?

Yeah. Yeah. And for your friend and for your kids, they realize that there are so many other ways that they can find fitness in their backyard or find, you know, great things to do. You have a pool in your backyard, something that other kids don't have the privilege of having like, hey, the public pool has been closed for the last three weeks, but guess what? You have exactly. And we've been doing so much like fun little things around the house. If I actually posted a few recently on instagram where I was doing, I was doing pushups and they would jump over me and then they would go underneath me and we would just keep doing that. Just little things like that and it keeps it fun for them. It keeps it interesting for me. And you know, it's, it's something that there's so many things that you could do at home during this time. You know, we're all quarantined and I think the jim burrows of the world just need to chill. It's like, it's not the end of the world, You can't hit a bar bill for a couple of weeks. Like it will be okay. There's just so many other things you can be doing and honestly, I feel like I honestly feel like this quarantine it's actually good for people I think if they really sit down and think about it.

I mean how often do you get a chance to be at home with your family or your friends or whoever you're close with, whoever you're going to be quarantined. But how often do you actually get to sit with them and spend quality time together and actually focus on each other and you know, where the world's not just spinning and moving at 1000 MPH, you get to actually spend time together and maybe, I don't know, maybe put your phone down for a minute, you know, and I've actually really sat back and taken the time to be like, wow, you know, even though I do get to stay home with my kids and home school already the quarantine and not taking them to their extracurricular stuff and they're extra classes has given me extra time and extra energy on top of that to you know, to really spend more time with them and focus back on what's important. You know, we get so caught up in in the strength world and instagram and posting videos and you know, and and showing off our our strength that I think we forget to sit down at home and and focus on what's really, really important and I know there are a lot of people that are like, well no it's not that jim is my therapy and then it's like all right cool.

I'll take that perspective? But also, I mean maybe you just need to learn some new coping mechanisms like you've got tons of time. Maybe it's time to try some new things here we are. Exactly. It'll be fun over the next month to see what people do post on their social media accounts and since they're not able to post what they're used to posting, it will be uh Exactly. So it'll be, it'll be interesting because it's, it's kind of interesting to see okay where people's priorities were, what they were posting about every single day before versus what are they posting about now? You know, did that priority change or did it force did this situation forced it to change? What's gonna happen when we go back to real life, Are you gonna go right back to your old ways? And it's all about how strong you are. Are you going to keep in mind? You know what was really important during that time? Um It's kind of a similar thing when you see people that um lift and that's like all 100% lifting accounts and then they like catch a cold or something or like, you know, sprain their ankle and then you see them post like a week later?

Oh sorry guys, I haven't been posting because oh I know I'm gonna lose some followers, but here's a selfie of me like, like what are you doing? Do you not know who you are? You don't have to like who the funk are you apologizing to exactly as much as, you know, I'm obsessed with strongman, I'm obsessed with lifting, I am obsessed with the sport, I absolutely live for it. I do. I think about it all day long, I am constantly planning what can I do to be better in that aspect. But man, like times like this really make you think as much as I love it and, and it's good for me and it's good for my health. There's just so much other things that I need to really be focusing on at the same time and I think strong man is a part of us, but it doesn't define us, right? Like there's, there's levels to making a person and when you start to cling to only one part of your life and kind of envelope everything else. When that gets shattered, then you've lost and we're not, you know, we're not minimizing how, how this is obviously affecting other industries, like artists, you know, who rely on entertainment to get paid or athletes who rely on sporting events to get paid, but it is an amazing life lesson.

Like you have other things that you can focus on. Well, absolutely for people who have it as a career, obviously that's a little bit different. They're, you know, they've got a financial loss, but for people who are doing it just as a hobby, you know, and to see what level they were doing it at versus now it's, it's very interesting. But yeah, absolutely not, not minimizing those people who do it for financial reasons, because that's hard. I can only imagine. Yeah. So I mean, now we know who you are. Is there anything that we missed out on? Um, I mean there's a lot to me, but I think the iceberg is good. Yeah. I think one hour of me is probably good for one episode. But yeah, we've got to have you back again and again. Yeah, a couple of bottles of wine and we can do this all night long. Well, is there any advice that you'd like to give to some of our listeners that might be going through the same thing, experiencing other things, other mothers that might be out there home school who have illnesses. And yeah, I mean, I think at the end of the day if your parents or even if you're not a parent and you have that guilt, you know, surrounding your family members, your friends.

You know, I think it all kind of goes together. It's not just about my Children, it's about, you know, my mother who I feel I'm a burden to, you know, you're not a burden. You're not a burden. You're not a burden. You're not a fucking burden, this was given to you. You know, and all I can say, and I say this all the time, it's my favorite thing to say is that you were born with this, whatever it is, you're born with it, and you just need to put your gloves back on and fucking fight. That's that's at the end of the day, that's my advice. You just need to have your pity party let it be for one day and then put your gloves back on and get the fun back up and fight. Fight for the life that you want to live and live the life that you can live regardless of what that means for you. You know, you can't be afraid, you can't let fear navigate your life. You have to face it and rise. And that's that's my advice. Yeah, I take it, that's it. And you can't let guilt take you back and we can't let fear take us back and there's nothing wrong with having fear something wrong with having guilt, but it's what you do with it.

Exactly. Well, I think advocating is also a huge I don't think I yeah, I haven't met too too many other people who have Children and are going through similar things as me, and I'm sure they're out there, but um I just choose to advocate advocate and I've been an advocate for years and years. I've even spoken at a national conference for dissent in Armenia in front of 500 people and I love it. I think it's um, you know, I'm not trying to be inspirational or anything, but at the same time, if you know, there's not more people like me who come out and talk about it than I think there should be. I think, I think this needs to happen, I think people need to stop being afraid of what people think and fear, you know, being talked about negatively or not being believed. I think they need to speak on their truth and I think it would be an inspiration to other people whether they want to be or not. Well, thank you for all that. Thanks for coming on and having a little chit chat with us and you know, maybe maybe we'll have you back, maybe we'll get another hour and who knows, we all got time.

Hey, I'm not doing anything for the least 45 days, so alright, 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