HemoLife Podcast
Welcome to the HemoLife Podcast, where we explore how to live an elite life while managing a bleeding disorder or other rare conditions. Dive into educational, entertaining content with stories of high achievers, expert advice on mental health, nutrition, and exercise, and the latest relevant news to elevate your mind, body, and soul.
HemoLife Podcast
Owning Hemophilia: Pain, Progress, And Purpose
Three hemophiliacs compare scars, strategies, and wins while turning pain into purpose and purpose into action. We talk identity, treatment breakthroughs, creative work, fatherhood, and the mentorship blueprint that keeps hope real.
• owning our condition without letting it define us
• moving from sales burnout to entrepreneurship
• empathy as a tool against despair
• reframing purpose with a daily “why”
• treatment advances and generational differences
• advocacy’s role when outcomes improve
• risk versus reward in pain management
• fatherhood as anchor and motivation
• music and creativity as therapy and message
• mentorship that turns inspiration into a plan
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Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.
Welcome to the HemoLight Podcast, your gateway to transformation and empower. Hosted by LAF WIO, we're diving deep into the world of rare disorders, unlocking the full spectrum of your potential. Each episode, join us as we connect with pioneers, wellness experts, and truth survivors. They're here to share powerful stories and invaluable insights from mental resilience to physical health, community news to life-altering strategies. At HEMOLIFE, we provide the tools you need to excel and inspire. Prepare to elevate your life, learn, laugh, and grow with us. Let's embark on this journey together.
SPEAKER_03:So you had a good morning. Dude, dude.
SPEAKER_05:So so I I I've been making a lot of music lately. I've been really, really like diving into that. I don't I don't know if you guys know Gary V. Yeah. Oh, yeah. Of course, for sure. So so um I actually got introduced to him a long time ago when I first started Hoop Social and kind of a little thing, and he he kind of told me, you know, go for it. Like he was one of those that was like, you know, if you're you're gonna be doing this type of thing, you know, you're disabled, you want to put your energy into something like a startup or something, like go for it. And so I I've been going for everything. And music-wise, I just started like I I've always wanted to make music. I used to produce music when I was a kid. I used to have all that software. I've been making music and writing notebooks full of stuff, you know.
SPEAKER_03:Yeah.
SPEAKER_05:I've just decided to make it real, and people are enjoying it. And this one artist that had like this this kind of song, she's like, I'm looking for a rap feature. It feels like it needs a rap teacher. She was asking people to kind of send her stuff, and I got word this morning that mine's the one that she chose. Wow, congrats, man.
SPEAKER_03:That's awesome.
SPEAKER_05:Yeah, that's amazing.
SPEAKER_03:So you ran into Gary Vee. I I'll tell you, Gary V was has been very instrumental in my life. Part of my story was like, you know, 10 plus years ago, I was trying to figure, you know, rebuild myself, like figure out who am I, um, what are these thoughts that are in my head? Like, I just I didn't understand myself and like why I thought differently than a lot of other people. And then all of a sudden I started reading books. I dove into uh like Richard Branson, Tony Robbins, and then all of a sudden I just kept on you know buying new books, and I went with uh Jab Jab Right Hook by Gary Baynerchuk, and that one was huge, and I fell in love with Gary V during that time frame and his energy, and and uh so yeah, it's pretty cool. So I'm a little jealous that you met him. Where did where did you end up running into him?
SPEAKER_05:Uh it was a it was a conference that they had in I believe it was near Boston, but it was this conference that we had in Boston for like I went to it was just for like startups and entrepreneurs and stuff like that. It cost like a little money to go to, one of those type of ordeals.
SPEAKER_03:So is that how you view yourself, like an entrepreneur, like you're just like a dream chaser, a go-getter?
SPEAKER_05:That's that's 100% what I'm doing right now. You know, I worked in sales my entire life. I used to be like a lead generation, cold calls, stuff like that. Um, and it just the work life killed me. It destroyed my ankles, it destroyed my body. Like my body wasn't great from basketball anyway, and just full-time 40 hours a week on concrete floors and stuff like that was just not what's gonna work for me.
SPEAKER_03:And so after Bro, let me let me ask you a question real quick about that because your story sounds so familiar to mine. Like, I I jumped into the sales and then I started doing retail, and you know, but I was always a dreamer. In the back of my head, I was a dreamer, but you know, we gotta do what we gotta do. We gotta make that money, we gotta find these jobs. When I was working in retail, I ended up getting to a point because of my damaged ankles, because of all the sports that I played, that I realized that like I could work like a four to five hour shift, maybe. Then right after, like there was it was almost like a time limit. And then right after that time hit, I knew I was in trouble. Like I knew my ankles were gonna be messed up for days, and then that and then that cycle is a deadly cycle to go down. Exactly. It's so great to talk to a kindred spirit.
SPEAKER_05:I'm not gonna lie. I mean, I have a couple brothers in like the bleeding community, but we just don't talk, we don't get to communicate a whole lot. So I I enjoy having somebody that directly understands that, you know, yeah, once you hit that mark, I mean, especially like I say, on those concrete floors, I was waking eight, ten hour days, and it just it just it just boom. I was fighting bleeds in them constantly, constantly, constantly. I I my left ankle is fused now. My right ankle probably should be fused, but they say that once you get both of them fused, you start to run into back problems and stuff, and I already kind of have back problems, so it's just it's my entire life, sadly, is is risk versus reward, and and you kind of have to balance everything.
SPEAKER_01:Yeah, and I'll I'll I'm gonna echo into that. So obviously, I'm a physician, I have severe hemophilia, my ankles are torn up. I mean, I'm wearing ankle braces like bad ankle braces. They said, hey, your ankle needs to be fused. I said, no, we're not fusing it. And so my dad's a carpenter. So growing up, like I I tried, I tried as far as I could go, uh, but man, bleeds just like in my ankles, shoulders, elbows. So, like, hey, we've got to be.
SPEAKER_03:But what's crazy, what's crazy is all three of us here. We're I can just tell, like, we have like the same energy, and I I can I can just feel it. And I I have felt it already with you, Ori. I mean, we've been connecting a little bit on social media, and we just have this good vibe of just like, you know, like we've had these setbacks and this adversity, but now we are who we are because of that, and we're doing some big shit, dude. Like, we we're on our entrepreneurial journey journey. Dr. Joe's been crushing his his businesses and stuff. I'm I'm getting ready to jump on board. I'm trying to follow suit with him, and and you're doing your thing. So I it's really cool. I mean, there's a lot to learn here for the people that are listening, and that because I I do have a lot of friends in the community who are struggling and that they have these setbacks and they they don't see the light at the end of the tunnel. So, like, what would you say to those guys that that just may they can't really see the light and maybe they just have stopped living to their fullest and dreaming to their fullest?
SPEAKER_05:See, that's that's tough because yeah, as a youth, I I understand every single feeling that they're having, you know. I I don't want to be that guy that makes it a competition about whose feelings are worse, but but we we do understand where they're coming from when it when you hit those dark tunnels. I've been in some dark places, some really dark places, places that you know I wouldn't like to talk about on a podcast, but but dark places. And and I think the way you get out is for me, number one, is is surrounding yourself with empaths. I think is is super important. Empathy can go a long way when you're having a depression battle or when you're battling depression. I think empathy is super important. Have people that are around you that are that are trying to understand you rather than just kind of giving you common tropes and like, oh, just get over it stuff, you know what I mean? People people that can give you, you know, that that hug on you that your brain needs sometimes. And then then on top of that, I I I follow a kind of a life lesson or I guess one of those like a mantra or some sort of mantra I got. I follow that that kind of life done for a while, and I teach my kids, and it's essentially basically that you know, the way that life is, you're gonna find things that are your favorite stuff, you're gonna find things that you really like. Things that you really like to do, your passions, you know, you're gonna find a lot of that throughout your life, and you're gonna find what makes you grow and what helps your heart and yada yada. But to me, it's always been super fascinating that your favorite thing is still out there. There are so many things, so many things to love, to to enjoy, to do in this life, so many things that you don't even think about, the billions of ways to choose your purpose and live your life that you haven't even considered. Your unicorn is is out there, you know. Statistically, probably even out of your favorite thing yet. Your favorite thing is probably still out there. The thing that you're passionate about might be still out there, you know? Keep searching. Don't end the search. I feel like it's important to always be like, you know, there are beautiful things in this life that maybe I just haven't encountered yet. And if you keep that kind of level of optimism, I find that it kind of helps the foundation for everything else, you know.
SPEAKER_03:I love that, man. That was really powerful. I mean, just changing the so it's a mindset thing, you know, just re-like re- uh reshaping the way that you're you're you're perceiving things and and you know what you're going through. I I love that a lot, man. That was that was really powerful.
SPEAKER_05:Well you're you're welcome. That to me, like I said, it's important to teach my children that because I I think that we're all gonna go we all go through depression as human beings. We all see a lot of dark times and a lot of bad times and a lot of things that can really make us feel, you know, like we we wanna end it all.
SPEAKER_03:Yeah.
SPEAKER_05:Or you know, uh I know a lot of humophiliacs that have battled with fatalism and battled with, you know, those types of thoughts, and and we've battled with those types of thoughts. But if if you can view life with a sense of optimism, I call myself an optimist, optimistic nihilist is uh the appropriate term, but if you can if you can put that optimism with it, I find that it just it enables you to just be positive in moments that otherwise wouldn't allow you to be, and gives you kind of a layer of resilience that maybe it is your baseline. At the very least, I can hold on to this.
SPEAKER_03:Yeah, I feel like um it's important to have something that you're you're waking up to, like you're excited to wake up for. You know, and when when you lose that, when you're going through uh, you know, the pain, the you know, the setbacks, and you wake up every day and there's not that you don't have that thing that you're you're striving for, a goal or something. Um you know, it could be it doesn't have to be a goal, it could be it could be a vacation, it could, you know, it could be smaller things, you know, just like something you get up to get excited about something. It could be a cup of coffee.
SPEAKER_05:Yeah, yeah. It could be anything. It's the difference between waking up that morning and choosing not to. And I think as hemophiliacs and as severe hemophiliacs, we've dealt with the fact that there are a lot of days where you just don't want to. You don't want to get out of that bed, you don't want to move. You you would rather, you know, the the pain win. And you just you just can't let it. And in order to do that, yeah. Yeah. Sometimes it's just a simple thing.
SPEAKER_01:My my dad, uh, growing up in uh elementary school, you know, I'm sure every one of us uh we didn't go to school, we were missing school, we had bleeds, we were on crutches, and my dad always said, Hey, like you have hemophilia, but that doesn't define you. And also you're a Malesky. So um my family's from Pennsylvania and now we're in Missouri, but he's like, You're a Malesky. So you're gonna go, you're gonna show up on time, and you're gonna, you know, you're gonna learn today. And I was like, Yeah, yeah, like wait a minute, I have a this bleeding disorder, but I'm also Joe Malesky. Like, I represent my family, and like I represent, you know, hey, I want to be on time. I don't want, I actually in grade school, I didn't want people to know I had it. I wanted to be an A student, I wanted to be on time, like I wanted to get my homework in. And granted, I was bullied and everything because of my you know, my disorder, but I just wanted to fit in, you know? And so I think a lot of hemophiliacs like they should be like, who I who am I first versus this thing that is trying to control you, which is hemophilia? Like, who am I first? And it sounds like for you, you're a basketball player, you are uh, you know, uh a guy that creates amazing content, you have all these other things that you are, and hemophilia is just one thing. Like you're a you're a lot of things, and so I feel like hemophilia shouldn't get stuck in the rut.
SPEAKER_03:Like, but I feel like you're part of your story too, Ori. Sorry to cut you off, Dr. Joe, was that that wasn't always part of your journey, that you had to you did something throughout your journey where you took back control over your life. So, can you talk about that a little bit? Like, how are you able to to like be like, you know what? I'm in control. I'm gonna rewrite my story the way that I want to do it.
SPEAKER_05:Yeah, I I I you know, to be honest, if if I'm not in control, I'll first and foremost throw that out there. I find that as a hemotheliac, and and given sadly my past experiences all in totality, I know that things can change on a dime. And I know that I could be very unhealthy very quickly and without knowing it. I can be in the hospital for five days, six days, and I didn't know I had a bleed creeping. You know, there's just so many ways that like we just can't so so for me it's just it's important to, I guess, finally own hemophilia and and not let it own me because the you know, I was very similar to like what you're saying, Dr. Joseph there. Like, like I I didn't want people to know I had hemophilia. I was very embarrassed. I I was you can ask my mother, and and I'm ashamed of it now. But I was embarrassed when people would, you know, talk about my disorder. I didn't like people like the teachers knowing, I didn't want students knowing, you know. I was I wanted to play varsity basketball, I want to be a basketball player, I wanted to be in the NBA, you know. As crazy as a dream it sounds now as a 36-year-old, as as a a 15-year-old, 12-year-old, whatever, that that was that was my goal. And hemophilia was something that I just tried to pretend I didn't have, for for lack of a better way of putting it, because I just wanted to be normal. I wanted to play basketball and I wanted to to go far with that dream. And I it felt like if people knew I had hemophilia, I was always gonna be given kind of like a cushion or a crutch, or I was gonna be given something extra. And I just I just I didn't want that. It felt like pity, it felt like something that made me different. And to me now, obviously, that that sounds so silly because if you own this thing and you advocate for this thing, you know, we we have a unique responsibility to to show that yeah, this disorder doesn't have to own you. You know, you you can have it and it can be a part of you, but it does not define you by any stretch of the imagination. And while you have this disease, you know, why not spread the word and let people know, you know, they're not alone, first and foremost. And then secondly, that you know, we're just as tough as you. Maybe we're tougher, you know, we're trying to get through life, and it's hard for us to wake up every morning, you know. Don't pity us. I don't need your pity, I don't need, I don't need your your crutch. I sometimes might need a hand when when my body fails me, but my mind is gonna give you everything it's got every time. That's important to me. And and now owning hemophilia and advocating for hemophilia and telling hemophilia X and young guys, you know, follow your dreams. Don't don't sit back, don't feel like this has to be, you know, you don't have to be that guy. You don't have to be hurt, sick, missing school guy all the time that feels really bad about his life. You can be tough, strong advocate that's telling people, hey, I've got this disorder, but I'm gonna live my life just as just as well as you do.
SPEAKER_01:Yeah, it's it's done a lot for me, especially going through med school and going through it all. Like I said, I I didn't want a crutch. I didn't want we can do we can give you a special classroom to take your test because you're on crutches or you can't walk. I was like, no, I don't, I don't, I don't need like I don't need that. Like I don't need pity. I don't that's why I kind of didn't want people to know. Uh and I just kept it to myself, went through, and I love basketball too enough that played in high school, it had two uh shoulder surgeries. I mean, now I just watch a basketball. Basketball is near and dear to my heart, found out, yeah, couldn't do it, beat me up, uh, couldn't do it. But yeah, man, I mean, I I really do think showing kids that like we have a physician, we have a guy that's consent creation, we have a guy that is creating his own clothing line. Like, go get your dreams, like Gary V said, like just go get them. Like, it's we're actually stronger than we think. This this you know, bleeding disorder really has catapulted us, whether we like it or not, to be stronger.
SPEAKER_05:Yes, it's a tool, it's a tool. If you view humophilia as what it's done for all three of us, it's given us a layer of resilience that I think the average Joe Blow just just can't fathom. And it's not because they're ignorant or they're idiots, I mean, it's because they're ignorant, they don't understand the level of pain that that can exist on a daily basis, and a person can still get their shit done, you know, for lack of a better way of putting it.
SPEAKER_01:I mean, uh, all so uh LA, myself, I don't know, you're so I'm 38, you're 36. LA, you're 36. Yeah, so we're all in that generation, the 80s generation. And uh, so we were talking about on a previous podcast, like, you know, the new developments where you're doing like a subcutaneous shot, the needle's really small, and we're I'm a factor guy, so I just I do factor. I don't, I don't know about you whether you want to share or not, but you know, just seeing like the generations, like my brother's 25 and he has severe hemophilia. I'm 38, we're 13 years apart. So he's still he's on factor, but looking at like the new advancements, like there's there's like a new product called like alhemo that's injected daily that's got a needle that's super small, you don't have to find a vein. It's just interesting to see like where it's going.
SPEAKER_05:100%. I mean, to me, like I take I take uh two medications I'll share. I I take a medication called AlproLix, which is a uh preventative weekly medication, and then as needed, I take benefits to uh if I have any breakthrough bleeds, you know.
SPEAKER_03:Factor nine, brother.
SPEAKER_05:Yes, indeed. Exactly. And and overall, I mean it's it's done tremendous wonders in the sense that like I don't get bleeds nearly as often as I used to. I have a layer of confidence that I never had in my youth, you know. It's obviously not foolproof. I still get plenty of breakthroughs. We all know that. We get our micro bleeds, we get our breakthrough bleeds, you know. It doesn't remedy pain, you know. But at the very least, I feel like because I don't get nearly as many bleeds as I used to in my youth, I just feel overall just more confident. And I feel like that that is a testament to the the new stuff because I remember feeling sometimes like I knew I was getting a bleed. I knew I was getting a bleed. And Alperlix kind of makes it sometimes where like when you think you're getting a bleed, oh wait, you know? I I already got that layer. I I can kind of heal like a like a like a regular person.
SPEAKER_01:Yeah, it's pretty pretty awesome with the new advancements. I mean, we used to inject these huge 60 C syringes, and like those are days are like we just talk about that. It's so different now.
SPEAKER_05:It's it's weird. And I see, I've had it hit me four times, the hemophilia. My my uncle has it, he was the first generation, I have it, my younger cousin has it, and then my youngest cousin had it. So it's struck on us four times. And and the the dramatic difference between my uncle's experience, my experience, and then my younger cousin's experience. Just the three generations just there, uh, is just so dramatic because you know, my uncle was still dealing with things like the AIDS epidemics and the and the hepatitis C stuff, and you know, the sharing of needles, and a lot of the stuff that was, you know, a little more transfusion, blood transfusion, stuff like that that you know our generation can't quite fathom yet, because we've at least had an artificial medicine, you know. So it's just it's it's interesting to see just how how advanced things are getting, and it gets me excited. I'm really excited for the youth because they they're not gonna have to face it the same way we did. They're they're not gonna have to take the same bumps and bruises that we did. And maybe they might be a little less tough, but they're certainly gonna be a lot more happy.
SPEAKER_03:I have a question for you though, just because you know, I we, you know, I uh I've worked in I've worked in the community for a long time, you know, with lots of different companies. I've done lots of different events, and it seems like we really needed a lot of resources and community and and all this stuff in, you know, when I was growing up, um it just seemed like it meant a lot. And I'm just trying to, I'm just talking out loud right now because you know, I've built a community on social media and I'm I'm meeting lots of new kids and new people. And it's almost like they aren't even coming close to the same amount of struggles and pain and burdens and setbacks and adversities. And it's like they're like completely different than us. Like, yeah, like and it's like you know, like we're we're advocating because like we're we just like we don't want anyone to ever suffer and go through what we went through as as kids. And I still think that we're needed. I feel a little less needed. I mean, I don't know how else to put it. I feel a little less needed. Let me just fucking just say it, okay? But I'm but I'm still gonna stay on my advocacy journey because I feel like there's avenues where we can still support in lots of other ways. But what do you think? I mean, are they gonna get too healthy now?
SPEAKER_05:I mean, it's like it's interesting because I feel like there's gonna be a strange, you know, change because once you have people starting to not have, you know, a lot of these disorders in general, some of these things like hemophilia and things not affecting them the way that they affected us because of these new medical advancements. It does make me wonder like a catch 22. There's a like we were talking about, we there's a certain level of resilience we gain from our journey. There's a certain level of it created us and turned us into what we are. And I think that as a group, we're proud of the people that we are because of you know our journey. These guys aren't gonna have to face that same journey.
SPEAKER_03:So I'm saying we might be the last of the resilience, the resilient ones. Like the last of the well, he's they're gonna be like, what the hell are you guys talking about? Like, you guys are fucking weird.
SPEAKER_05:Like, yeah, you know, it's strange to me because like my first near-death experience, I was five years old. I was five years old, and I don't know about you guys, but I I've had a handful of coming very close.
SPEAKER_03:Yeah, you said like six or seven near-death experiences.
SPEAKER_05:Absolutely. And my first one was yes, five years old. That was kind of my first dealings with a lot of things like like pain medication, stuff like that. I I uh this is gonna be a funny story now that's on the internet, but I was pretending to be a Power Ranger. I was five years old pretending to be a Power Ranger.
SPEAKER_03:We've all been there, brother. Come on.
SPEAKER_05:What color? Which one? Which one though?
SPEAKER_03:The green, the green, the red, the pink, which one you can do.
SPEAKER_05:Tommy's my guy. Tommy's my guy. Rest in peace.
SPEAKER_03:Tommy's my guy.
SPEAKER_05:But uh, okay, uh, yeah, never mind.
SPEAKER_03:I I got he's like, let me put my let me put my Power Ranger mask on real quick.
SPEAKER_05:Like you guys are gonna judge me.
SPEAKER_03:Hey, see?
SPEAKER_05:There it is. I got matching Christmas sweaters with my wife. She's the pink one, I got the green one.
SPEAKER_03:I'm judging you in a good way. I want to- You're right.
SPEAKER_05:I told you, follow your follow your passions all the way down every nerd dumb. I tell people You weren't kidding.
SPEAKER_03:You weren't kidding.
SPEAKER_05:Be as big a nerd as possible. But yeah. So my first experience, five years old, I was a power ranger. I I was jumping from a bed to a chair. I missed the chair. I fell head first. I I actually still have the scar and the dent in my skull. I felt hard. And I went to a hospital in my local hometown. I won't obviously share names. And they uh told me to go home and put ice on it. And it might take care of itself that it, you know, we we could just kind of wait on it a little bit, which was obviously my mother was like, This that's that seems kind of stupid. That that doesn't seem like a great idea, so she took me to the the next hospital in the b city, you know, big city, we're in Maine, city, villa, whatever you guys would consider it. And they immediately had to rush me into surgery. I was bleeding so much into my brain that they had to release the pressure. And I I remember my head hurting. I remember going to the hospital, I remember my mother being upset. I remember waking up with a tube in my head, uh, just a little, you know, and and these are you know some of my first memories just as a human being in general. You know what I mean? Five years old. I had my sixth birthday in the hospital. I was in there for you know a substantial period of time. And and to me, that's one of those things that always molded me because I feel like I had a unique view on life from a very early age. And I feel like I always have because of some of these experiences of getting close to a certain level of am I gonna make it through this? Am I gonna be on the other side? Yeah, when's your time happening?
SPEAKER_03:Did you ever grow up? Try to interrupt you, like I have to know this. I have to know this. Like growing up, I always felt like I I had this visualization of like a almost like a countdown or like a timer, or like I don't know, like I my time was limited. I always felt like a limited time. I don't know. I never felt like I was gonna have I was even gonna be 37 years old.
SPEAKER_05:Yeah, um that's I think it's weird. Like it hits me kind of hard that you say that. I mean, I don't want to get emotional, but that's exactly I didn't think I was gonna be here. I'm 37. I know people think that that's silly, but given I apologize.
SPEAKER_04:You're good, brother. Given the experiences that I've been through, I just didn't see it coming. And I'm proud of the fact that I'm here. I'm happy the fact that I'm here. But if you had asked me five, ten years ago, even this wasn't always I feel like my I I had to set a timer, it seems almost like a perfect word.
SPEAKER_05:Like I just felt like my time was always, you know, held in someone else's hands, not my own. Like I and it, and it was just gonna be a short period. Like I I I had this expectation that I might not reach 30 at a young age. I already had that expectation.
SPEAKER_03:And you made decisions probably in your life based off of that thought, because that's what I yeah. I made stupid choices because I was like, I'm thinking long term. I don't give a fuck about my my retirement plan or my savings account. I'm living life right now because I ain't making it.
SPEAKER_05:But we're here, brother. We're here, we gotta make some changes. I feel like hemophilia gave us kind of a YOLO attitude, you know, where where you only live once and and uh and that kind of like you have to enjoy every moment and every experience a little more fulfilled because yeah, like our health can change so quickly. Why not have that mentality sometimes? And I think as positive as that mentality can be, sometimes, like you said, the the brash decisions that can come from it aren't necessarily healthy.
SPEAKER_01:Yeah, I mean, growing up, I was six months old, I had bleeding in in my brain, and uh, I didn't have to have surgery, but they're like, Man, he's if he was gonna be an A student, he's probably gonna be a C student. And now I'm a physician, went through medical school, and hell yeah, so hell yeah. Yeah, so uh yeah, and then I got meningitis, which they're like you should never do a spinal tap on a hemophiliac. Well, I had two because that can paralyze you. So I had bacteria in my blood that was causing to be me to be septic. I mean, I had jumped off a chair and I hit my head on my grandparents' head, like an RV, and there was a stare, and I nailed my head against I that was when I was like eight years old, but like head injuries, shoulder surgeries, ankles are destroyed. So I feel like us 30-year-olds, we've been we've been through similar things.
SPEAKER_05:That's that's it. Like we're we're 30, but uh we've we've got like 50 years of damage on here.
SPEAKER_01:Yeah, I mean, I have um severe uh arthritis in my ankles. Just saw an orthopedic surgeon recommended fusion, and I was like, no, I'm gonna, you know, put braces on. And interesting enough, um the weight loss shots, the GLP1s, they're gonna be approved for anti-inflammatory purposes for joints. So I started doing that at a low dose, and like my my ankle pain, especially my right ankle, is like half.
SPEAKER_02:Really?
SPEAKER_01:So, yeah, so it's like, I mean, it's better than taking pain meds or a bunch of ibuprofen that's not recommended. I don't know. I just like advancements in medicine are really uh really encouraging.
SPEAKER_05:Yeah, that's that's a big deal because I mean, for me, and I know onesie's sorry, I keep saying for me, I'm not used to talking to like two other humophyllings at the same time. So I apologize. Yeah, I should for us, for us, pa pain relief and and chasing that unicorn is such a difficult game. That's the one that I probably had some of the biggest battles with uh is pain relief and and chasing pain relief because the the layer of exhausted exhaustion that just adds to everything, you know. It turns going to the mailbox into a marathon, you know, it turns things into just simple things into just dramatic things. And and chasing, yeah, that with with medical things, tools that we have now has been super difficult. I've gone through just I swear that when I go to the physician and see my PCP, they open up a menu and they're like, alright, which one are we trying today? You know, and it's all just all these different types of stuff. And then I've tried so many. I've had withdrawals from a lot, I've I've had battles with a few, I've had things that I'm not proud of with a few, you know what I mean? Like, like we've all taken that extra pill that we probably shouldn't have. You know, there's a there's a lot of that. And and nowadays, you know, uh I feel proud of the fact that despite all of that, I'm still here pushing hard, pushing hard for my children, living my life, following my passions, and I've made it through those choices and and pain, you know, at the end of the day, despite the fact that it kind of holds on, it it's kind of become like a a a familiar hold on. So like you know, like it it this is me. That pain is me. And and one day, obviously, I hope to relieve it more, and I will continue to fight and chase that unicorn, but but I would choose pain and coherence and high functionality over not feeling pain, and my children don't have a father, you know what I mean?
SPEAKER_01:Yeah, it's also it's risk reward everywhere you look. Me and LA, we both have four kids. We both have like he has like a two or three-week old, I have a month-old baby. So all my kids are like under the age of five. LA's has some older kids, but I mean, I couldn't carry my daughters around. It was just my ankles, I couldn't. I was getting bleeds. So that's why I had to go into the orthopedic surgery and got braces, and I'm doing all this other stuff for pain relief. But I was like, no, I I have these kids to raise. Like, I gotta carry them, very car seats. Like, I don't care what I have. Like, I gotta power through this. Like, I'm a dad, man. That's number one. I'm a dad. Um, I don't know. It's it's awesome that we've all you know shared in the fatherhood journey. And uh, you know, I feel like hemophilia has only made it stronger.
SPEAKER_03:I think that's important. It's wild. I mean, I just I I just want to say, you know, I'm the host of this show, and you've been giving me chills the entire time when you're speaking, or it's uh your ability to articulate exactly how I'm feeling and in a way that I can't even do it, how I can't even do it sometimes has been it's been wild, man. I so I just want to say thank you for joining us on on the show, man. It's super powerful, man.
SPEAKER_05:It's it's right back at you guys. Like I appreciate number one, having some other brothers to talk to that that can relate. I mean, I know one of the one of the biggest burdens of a hemophiliac sometimes, and and especially being a hemophiliac kind of here in Maine, is is is loneliness. I was lucky to have my uncle had it, so I I kind of had like a blueprint to follow. So, but but I can see how other hemophiliacs can can get super lonely because I felt it and I have a close family and I have people around me and I felt super lonely. So I understand that people are gonna feel that way in other scenarios, and and I think it's important, you know, you mentioned you know, maybe maybe we might have to do this as much for the children, but we're always gonna. Have to do this for the guys our age. The guys our age that aren't that don't talk up, and the guys our age that aren't speaking out for themselves, they're always gonna need us to advocate for them because the they need that voice if they can't find it on their own. I think hearing people talk about it and going just having that moment, like, oh man, I get that.
SPEAKER_03:Yeah. And I want you guys to know that these episodes are powerful. And you I don't think people the reason why I'm so passionate, and we're the reason why I've been advocating for so many years, the reason why I put myself on social media, the reason why I make myself make stupid videos sometimes is because not everyone gets to see what I get to see behind closed doors, and that is all the private messages that I get from from new parents. I mean, I'm just I'm looking at let me just go to my TikTok, like real quick, and let's see, even okay. Um, so right here. So, hey, your podcast is truly so helpful. My son is autistic and has severe hemophilia. I infuse him at at home, but he's uh he's got so much medical trauma. He was diagnosed with PTSD, he's four. I love listening to the other stories because it's giving me hope. I've been crying every day about this disease since he was diagnosed. The stories you're sharing give me hope for my son's future. Thank you for doing this. So, yes, we did talk a little bit about some people, maybe it's not making that, but man, these this is doing something. And when you get messages like that, I don't care if it's just one. But but it's not, it's it's hundreds now. But this is one. That's why I get up and I do what the hell I'm doing, dude.
SPEAKER_01:And and I'm gonna say this, I'm gonna say this. Speaking of listening and voices, Ori, tell us a little bit about your like music. LA was like, yeah, I was listening to it.
SPEAKER_03:I said no for real. Yeah, I was listening in the gym and I loved it, dude. I got a killer workout with it.
SPEAKER_01:But real real quick, your music, like, I want to listen to your music because I can connect with that. Like, man, that's that's a hemophiliax work. Like, share your music with Dr.
SPEAKER_03:Joe on Facebook. He's got some good songs.
SPEAKER_05:Thank you. First and foremost, thank you for validating me because that that that's a lot of stuff that just like comes exactly from like I was saying, like my notebooks and these things that I did and all this beat producing when I was younger. Like, it's just all like this cumulative, you know, all the stuff I've been through, the pain, the hemophilia life, the the dark moments, the happy moments, you know. I have some stuff where I, you know, I get to talk about my wife and how important she's been in my journey, you know, how how supportive she is, you know. Like it to me, like I produce every beat, every single word is me. The the vocals are AI. You can tell that the vocals are AI vocals. I had them sing that part. That that is it. Every every touch of this is mine, and and it's getting a message out there, I think, to people that that you can hear me. And that's that was important to me.
SPEAKER_03:The words are what is what made it powerful when I was listening to it. It's the words with it. It's I love it, dude.
SPEAKER_05:And that and that makes me feel really good inside because that's exactly that was exactly my goal. Like, whether whether a single person listened to this or not, it has been super cathartic to just have my words out there and and just hear them and go, like, you know what? You know, like I can make this stuff and make it sound coherent, and it's like, geez, you know, maybe I do get a knack for this type of thing, producing stuff, you know? Yeah, maybe I do follow this dream that I used to have. Like, maybe why not? Why not?
SPEAKER_01:You know, I I I say this, LA, I I have a thought. So we have these events that we're gonna do every quarter uh with Rise. Um what about getting your beats and putting them on top of our videos that we do for these events? And then it can be like just a mesh of we're shooting hemophiliacs, we're listening to hemophiliacs. Like, I don't know. I I think there could be some collaboration here.
SPEAKER_03:Yeah, I don't know if you saw Ori, but we've been doing like mentorship. We created like a mentorship program event, and we did the our first one in Texas where we it was it was based around fitness for that one in particular. But uh, we really believe in trying to bring some core leaders together and inspire people to to chase their dreams, like you were saying, but but not to just go in there and have one little conversation, one little inspirational talk, like follow-up and like, hey, let's build a real relationship with some of these younger guys. Like, what are your dreams? And because you know what, guys, success leaves clues. Okay, we're all successful in our own ways. And and those clues are important. And if you and if you can have that right mentor in your life to pass those on to you, there's a blueprint to success. But success is not a mystery, it doesn't belong to just one person. Everyone deserves deserves success, everyone has an opportunity to achieve success. And the and once once, you know, there's a there's a quote that says, you know, if you want to understand the road ahead, ask those coming back. So we are that we're the hemophiliacs, we're the ones coming back from that road. So I just want to create this, you know, continue working on this program and try to help these this younger generation overcome, you know, overcome any setbacks they might have and give them the blueprint to success. And that's beautiful.
SPEAKER_05:That's beautiful, and that's number one one of the reasons why I want to get a hold of you and try to get a hold of this and be a part of this in any way, shape, or form. Because number one, I enjoy what you guys do, the content. But but most importantly, yeah, like like I looked at you, LA, and I saw a guy that inspired me, you know, brought re-inspired me. You know, I looked at you and you're like, I was like, holy crap, this is a VR B that's a that's a weightlifter, and then and it does all this, you know, and it looks like that. Like, like, I was like, holy smokes. I uh what kind of limitations am I putting on myself? You know, I I would just, you know, I have a hard enough time getting to the gym after playing basketball all those years. And I was just like, you know, part of that was because I just didn't want to put myself through lots of bleeds and stuff, and a lot of the the pain that could have come from like going to the gym all the time, you know what I mean? Like sometimes we're like, eh, do I really like like you always have to balance the weight between physical therapy and therapy that hurts, you know what I mean? There's always like that that that in-between you gotta kind of find where it's like, oh, that was a good workout that didn't hurt me, you know? And and just watching you and and what you're capable of and what you've been capable of in your life, like just yeah, like just reinvigorates me, man.
SPEAKER_03:It reinvigorates me because yeah, it was almost like every day, like when I was chasing that goal in the beginning, I did it because I I chose bodybuilding, not because I was in love with the sport. It was it was a game plan of how do I make the biggest impact? How do I make so much noise that it's impossible to ignore me? And I was like, the physique. If I can change my physique and turn it in, make myself look like a superhero, how could you ignore me? My voice needs to be heard, I'm gonna be heard. But but but that journey was hard because every day I woke up, I had to choose the face to to put myself through pain. I didn't, I could have been like, Oh, I'm gonna chill on the couch, I'm gonna do everything to stay away from it. I I fought it, I looked at you know, dead in the eyes every single day and said, bring it every day. And then as a warrior, not like what you guys were saying. Now pain's like now me and Pain, we're like best friends, you know? Like it's just like what we do. Just hang out in the weekend. Yeah, exactly. How you doing, buddy? How you doing? Right. I'm gonna drink.
SPEAKER_01:Oh, what a great podcast, man. I mean, this is awesome. This is awesome. Happy Ori you jumped on the show, man. We're we're so happy to hear from you, and uh, we'll be in touch.
SPEAKER_03:Yeah, thank you. We're right, we're right under an uh uh an hour after editing. It'll be perfect, man. So I'm super excited. I'm gonna work on this today. And thank you so much, Ori, for joining us today. Let's stay in touch and send Dr. Joe your music, man. I want to hear your music.
SPEAKER_05:Yes, I want to listen to it, man. Yes, yes. Uh, if you don't, uh follow me on Facebook and uh TikTok, my uh hoop social. Hoop social is that is me. We try to make it as easy as possible, hoop social. So yeah, I appreciate you guys tremendously. This has been a great experience. I I really enjoy talking to just kindred spirits, and I can tell you guys are that. So that that really that that boosts my dopamine even more today.
SPEAKER_03:That's awesome. Let's stay in touch, guys, because we're doing some amazing things in the community and we need more leaders. So there's there's opportunities for us to connect even further and do things beyond this. So let's stay connected. All right, gentlemen, have a good day. Have a great one, guys.
SPEAKER_05:Thank you so much.
SPEAKER_00:See ya. Thank you for tuning in to the Hemo Life podcast. Today's episode hopefully inspired you and provided valuable insights to enhance your journey. Join us again to hear more incredible stories and expert advice from our community. Make sure to subscribe and stay connected with the group of extraordinary achievers and pioneers. On behalf of LASYO and the entire Emo Life Team, keep pushing forward, strive for excellence, and remember you are the architect of your own desktop. Until next time, stay strong, stay inspired, and continue on your path to a lead life.