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
Overcoming Ankle Damage: The Revolutionary ExoSym Brace
Host L.A. Aguayo and Co-Host Drew Kochera invite guest Kris Mill on the HemoLife Podcast. Kris, known on Instagram as @millzy2370, shares his transformative journey with the Exosym brace, a cutting-edge orthotic device that has restored his mobility and dramatically improved his quality of life as a severe hemophiliac.
• Detailed explanation of how the Exosym brace works by transferring pressure off damaged ankle joints
• Journey from severe mobility limitations to running a 5K after getting the brace
• Funding challenges and community support through GoFundMe to cover the $18,000 cost not covered by insurance
• Learning process of adapting to the brace, from painful first steps to running within a week
• Unique perspective on mental health with hemophilia: "We're bigger than hemophilia"
• Discussion on different severity levels within the bleeding disorder community
• Fitness recommendations for hemophiliacs, emphasizing machines for target joints
• Challenging common wisdom that swimming is beneficial for all hemophiliacs
• Tips for navigating insurance battles and leveraging resources like HTCs and hemophilia organizations
• The importance of developing resilience and helping others: "If you can't be a hero for yourself, be a hero for someone else"
Follow Kris Mill on Instagram at @millzy2370 to stay connected with his journey, and if this episode spoke to you, share it, tag a friend, and leave us a review on Spotify or Apple Podcasts.
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Welcome to the Hemolife podcast your gateway to transformation and empowerment. Hosted by Elia Aguayo, 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 true 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 3:All right guys, welcome back to the Hemo Life podcast, where pain meets purpose and our stories become strength. I'm your host, la Aguayo, and today I'm joined by a new voice, my co-host over here, drew. He's a powerful advocate and severe hemophiliac. Drew brings firsthand experience, energy and passion for pushing the community forward.
Speaker 2:Thanks, l. You know I'm pumped to be a part of this movement and especially excited for today's guest.
Speaker 3:That's right. Today we have a truly inspiring guest, chris Mill, known on Instagram as millz2370. He's a severe hemophiliac who has transformed adversity into advocacy, becoming a beacon of resilience in our community. Despite facing significant challenges, including severe ankle damage due to hemophilia, chris refused to let his condition define him. He sought out innovative solutions and became one of the first hemophiliacs to try out the Exosim brace, a cutting edge orthotic device developed by the Hanger Clinic. This brace, originally designed for military personnel, has been life-changing for Chris, restoring mobility and allowing him to pursue his passions.
Speaker 3:Chris is a staunch advocate for mental health awareness with the bleeding disorder community. He openly shares his experiences, emphasizing the importance of mental wellbeing alongside physical health. In this episode, we'll delve into Chris's journey with the Exosim brace, discuss the mental health challenges faced by those in the bleeding disorders community, explore fitness do's and don'ts for hemophiliacs, and tackle the often overlooked battles with insurance companies. All right, chris. First off, welcome to the show. I'm grateful to have you here. Thanks, man. Happy to be on, glad to see it back up and running again.
Speaker 4:I know, man, I'm grateful to have you here. Thanks, man, happy to be on. Glad to see it back up and running again.
Speaker 3:I know, man, I'm excited. It was about a two-week break, a little hiatus there, just a lot of stuff going on, but I'm excited for this one. So let's start off with what changed your life. For the people listening and they don't know what the Exosim brace is, can you explain what it is and why you needed it in the first place?
Speaker 4:Yeah, so well, first off, I'll, I'll kind of show you. I I took it off so that you guys can see it, but you know, I realized that this is going to be on video and audio only.
Speaker 1:Yeah.
Speaker 4:I'll just kind of give an example here. But basically what it is is it's an advanced AFO, which is like that, those plastic braces that you see people that have like cerebral palsy or drop foot have that go up the back of their leg. The brace was, like you said, originally developed for the military and within like the last 15 years or so it started making its way into the public. So basically what it does is it works by you know, taking the pressure off the joint, off the ankle joint or any of the lower lower leg injuries that you might have, and then it kind of puts it up in this knee cuff at the top and then the struts on the back. That works as like a spring to propel you into your next step. So basically, my foot is sitting in there limp the whole time, or at least it's supposed to be. Sometimes you kind of grip with your toes and do other dumb things that are just reactionary but you're supposed to leave it limp in there.
Speaker 4:But yeah, the reason that you know I needed that was because I was becoming like far too limited in what I could do with, you know, my ankle joints being my target joints, it led to, you know, severe bone on bone arthritis. I wasn't quite ready for an ankle replacement or a fusion, so cause those aren't quite up to par to, like knee replacements are, so that's why I got it.
Speaker 2:So, chris, what kind of ankle damage were you dealing with before the XSM and how was it affecting your daily life and fitness?
Speaker 4:Yeah, so, like I mentioned, you know, I was bone on bone in both my ankles and that was, you know, a result of bleeds over the years. From playing basketball or stumbling through the woods. My ankles were hurting so bad it was basically a struggle to get up and, you know, go to the bathroom in the morning and that's only 15 feet away from my bedroom, you know. So that's always rough, but I couldn't stand at, like, my conferences that I would go to for work Yard work was starting to get tough, Cardio was pretty much non-existent and, you know, as a result of that I couldn't really lift legs or do that kind of stuff.
Speaker 3:So yeah, man, that's crazy. Yeah, I know, man, I I struggled with that for so long and it's just like you know, the cardio thing that you just mentioned. You weren't able to do like any forms of cardio at all, and then no, like walking was definitely out of it.
Speaker 4:The most I could do is probably like ride a bike.
Speaker 3:Okay, that was pretty much it, but that's like what can you and what would you like? The same like can you full out run now?
Speaker 4:yeah yeah, I can. I can run after I got them. Um, it was kind of my goal to run a okay yeah so I I did that. That was the first 5k I ever ran and that was after getting the braces, so yeah, I could do that. I mean it was rough, I ain't going to lie, and that was soon after, so I wasn't really like an expert in using the braces yet.
Speaker 1:Yeah.
Speaker 4:Yeah, now I can pretty much do anything. I can sprint, like that's. What I try to stick to now is sprints, the long distance running. I just feel like that's kind of like too much on your other joints, just like if you've got a fusion and started running, you know it's a little bit too much on your knees and your hips. So I try to kind of limit that a little bit and I could definitely go for a long walk, no problem, that's, that's easy. But yeah, I try to stick to sprints and stuff. Now.
Speaker 3:Okay, yeah, I've always. It's kind of like a dream of mine to kind of feel that feeling again. I remember when I was able to run and that that those endorphins, that just get released from running. It's just like it's a special feeling that you know once it gets taken away and then then you're like man, I want that so Absolutely. If you got, if you got full, if you're out there and you got full capability to run, you have no excuse and I promise you it got stripped away from you.
Speaker 2:you would want it back in your life absolutely special days that, like, you're feeling really good and you get that one run in dude it's just like. So, it's just so powerful.
Speaker 3:That's so true too. I actually I was at the park not that long ago with my kids and they they were all like playing tag and stuff, and you know I'm just sitting there like an old man. I'd be like I'm glad you guys are having fun, and then they start like trying to involve me into it.
Speaker 2:You know, like, oh I got you, you're it and I'm and then you know it goes to your head.
Speaker 3:You start to think do I even want to attempt this right?
Speaker 3:and then I but dude, I did it and I was like what I was like I actually have a video of it because I uh, my kid was running up the hill and I went, I was surprised on how fast I was getting to them and then I like I dove and like grabbed his foot and like pulled him down. I was, I was actually impressed and I was just like man, I could, you know, but I can't do that all the time, but for some reason at that moment I was able to just do it, you know, yeah, yeah, that's awesome.
Speaker 3:So, like tell me, like what was the process like to get evaluated and fitted for the Exosim? Was it smooth or did you have some roadblocks?
Speaker 4:So it was a little unsettling at first. I guess you could say I wasn't quite sure if it was going to work or I couldn't see how it was going to work. So basically, what you do is you take a bunch of videos and you send them out of you walking from the side, from the back, from the front, and you send it out to the hangar clinic in Gig Harbor, Washington. Explain to them what your issues are, where you're finding trouble walking when it hurts, what are your conditions, and then they let you know if you're a good candidate or not, which of course I was.
Speaker 4:And the next step is to gather funding and that probably was like the biggest roadblock and, of course, dealing with insurances, and this, of course, was not covered by insurance not one penny at all. So I had to go through all the different sources to try to get funding for it. I went to the chapters and Hope for Hemophilia and my HTC to see what funding was available to help with that, Because it's like I understand that maybe I can afford these things, but like I shouldn't have to pay for it. This should be something that is definitely covered by insurance, you know.
Speaker 4:So then I also had to kind of like swallow my pride and start a GoFundMe, and I really didn't want to do that because, like I said, I could probably afford it. But when I was talking to the clinic out there, they talked me into it and they said you know it's, it's amazing how many, how much support you'll get. And you know, no matter how much money you have, it's just amazing to see how many people will turn out to support you because they know the struggles that you're, that you're going through. And they were right. And I couldn't believe the amount of support that, you know, I, I still had to, you know, pay out a huge chunk of change for it.
Speaker 4:But just the fact that so many people did it like even if it was like five bucks, is like that's pretty cool that you're did you just like use like social media platforms like facebook and instagram and like that was?
Speaker 3:yeah it's kind of just how you promoted it and like how long did it take for it to like come to fruition, to where, like, you hit your goal number it didn't take very long at all.
Speaker 4:There were some friends that came out of the woodworks that were just throwing some astronomical numbers out there, but it didn't take too long at all and I I surpassed the goal that I had.
Speaker 3:So yeah, dude, that's really amazing. I mean, I the whole go fund me thing. I think that some people have abused it. Oh and so, therefore, you know, sometimes you have this like sense of shame when you're creating it.
Speaker 3:I haven't done it yet, but I'm speaking from patients that I've, you know that I've talked to, you know through the, you know through our pharmacy and stuff, and they've, for different reasons, whether you're, you know that you're, you're losing your, your house, and you know different stuff like that, right, like hearing them talk about the shame that they have doing it and I don't know, so I don't know, I don't think there's, I don't think there's anything wrong with it.
Speaker 3:You know, to try to get help, especially for something like this, like I mean, you're, it's completely changed yeah, his life, you know chris's life, and so I think that's amazing and I just I know there's other people who are interested in this brace too, and so you know, I don't think they should feel, you know, ashamed to try to get some help with something like this yeah, you should never be ashamed to ask for help so once, once I got my funding and I flew out there to gig harbor in washington to get fitted, they basically cast your leg in um, the same kind of process that they do for a regular cast, like if you broke your bone.
Speaker 4:So then they come out with like a rough draft version of it or a prototype. That's kind of just real crude looking, all plastic. And then you know I try that on and then I try to walk with it and as soon as I put it on and took the first step I was like holy crap, I just wasted $18,000. It was my ankles hurt so bad they were worse than like walking normally. I was like this is, this is not right.
Speaker 4:But you know, ryan out there he assured me that you know the real ones are going to feel much better and that I would learn how to walk in them properly. So over the next week you have to stay out there to learn how to walk in them. You know I'm talking like baby steps, like you're literally holding onto a rope and walking. You're holding onto like a walker and all this other kind of stuff, just learning how to walk. Then you go up steps, then you do this and eventually, within that same week, you're running Like you're in the parking lot running. So it was like really disheartening when I took those first steps and I tell everybody that I tell about this, that you're going to go out there and you're going to be disappointed at first, but then you learn how to use it and how to walk again, keep your foot limp and strengthen those muscles that you haven't used in years and then, once you get up and running, it's amazing, once you get to that first run, that you haven't done in years.
Speaker 3:I'm like getting chills. All right, yeah, like seriously, I mean having to learn how to like walk again. And did you like, did you?
Speaker 4:did you document that entire process? Yeah, there's. There's a video out there of me kind of learning how to walk again on my page.
Speaker 3:Yeah, dude, that would be so weird. Just being like man. This does not feel right, like even like with you know you're playing golf and all of a sudden your grip is one way, yeah and they change your grip and then you're like dude, what the heck is going on. I feel like a dummy and then but then you have to like keep on trusting it and trusting it was it actually? Hurting your body, or was it just awkward?
Speaker 4:it was just awkward and like you would know when you weren't using it right because you would have pain in your ankle. So and it's just, you know, a quick moment of pain, just like when you're you hurt anything now like you twist it the wrong way or something. Real quick. But did, did you get a lot of bleeds as a result no, no no, I didn't get any and I guess maybe that's a whole different topic to talk about with me. I haven't had a bleed in years.
Speaker 2:Okay.
Speaker 4:Like, like years, and if I did have a like, a bleed, it was mostly just my ankles.
Speaker 3:So you were mostly just dealing with arthritic pain.
Speaker 4:That's pretty much where I'm at. Yeah, gotcha, okay. How, how often are you infusing?
Speaker 3:I'm on hem labor and it's once every two weeks, okay, awesome.
Speaker 4:So man, no bleeds, it's yeah I mean, I think it's, I think it's crazy like how we all have different, like bleeding profiles yeah and yeah, it's so crazy it's like like I see some of these guys out here that just like they breathe the wrong way and they get a bleed and I'm like I haven't had a bleed in years and like I'm pretty much doing whatever, like I go into the gym and do the same thing that everybody else is doing. You know, I don't know, I just I don't get it and maybe that's a result of being, you know, in in shape.
Speaker 3:So when, when did that transition happen for you, though? Like, maybe, just like, let's take a few steps back and talk about, like you know, growing up with your bleeding disorder the transition to where you don't have bleeds anymore.
Speaker 4:Yeah, so I mean, I did have bleeds when I was younger, right, I mean, I guess that, and I kind of attribute that to not having the strength in the joints and all that other kind of stuff. But I even used to get like more muscle bleeds and all that as well. But I think it was probably sometime in like high school where that started like dwindling off and being more just my target joints, you know. Everything else was just, it may be a maybe a jammed finger or something, but at that point I was still even on um as needed. I was on that, you know, on demand. I wasn't on prophylaxis until 2016 is when I started doing that. Yeah, I even not on demand. I really didn't get that many bleeds, in my opinion anyway.
Speaker 3:Well not to do joint damage of some sort?
Speaker 4:Yeah, that was. That was like I said, the only time that I I would get it was in the target joints.
Speaker 3:Yeah, that makes sense. Just to give the listeners some insight on you and your journey, do you? You have? You have a right yeah With with inhibitors or no inhibitors?
Speaker 2:Never had an inhibitor. Yeah, it was rough growing up. We were, you know, it was the 80s, so we were kind of pushed away from infusing unless we absolutely had to because of the HIV and Hep C crisis, and so you know I would have a bleed and not infuse, so it would be a lot of damage.
Speaker 3:Were you always on? Were you supposed to be on profane, and you just weren't.
Speaker 2:No, no, that was not. The doctors were telling me not to infuse unless I absolutely had to Yep. And they were just so worried about the infections and the viruses.
Speaker 3:So I was curious, because me and Drew, you know, we just started to get to know each other. You walk with what? What it looks like. A lot of pain, yes, and you know you're suffering from that. Your mobility is very, very limited. Yeah, um, do you think? Is it both ankles or just both ankles?
Speaker 2:ankles, both ankles right knee, right elbow, right shoulder so would the exosim be something that yeah, I would. Could change your life too, absolutely really.
Speaker 4:So there's let me add one thing into that with the Exosim. So if you have a weak knee, they have like an extension that goes off the top of it that will encompass your knee as well. It'll kind of like help that whole thing out.
Speaker 2:How has the brace changed your quality of life, like physically and mentally?
Speaker 4:Yeah. So I mean it's definitely obviously changed my quality of life. I'm in less pain than I was before, and I'm not saying that it took all my pain away. There's definitely still some pain there at the end of the day, like if I'm really pushing it, but it's so much better and mentally that allows you to just, you know, focus on so many different other things you know, without having that pain in your life.
Speaker 3:Yeah. So, chris, do you think this is a game changer for other hemophiliacs facing joint damage? Who should consider this?
Speaker 4:Yeah. So I definitely think it's a game changer and I don't think it's for everybody. You have to be willing to put in the work, to make these work for you. You have to do the therapy, you have to do the strength training at the gym and you have to commit to the bit. But if you're willing, if you're not willing to then save your money and go get a fusion or a replacement at that point, but you know, if you're going to put the work in, you know I think they're definitely worth it for you.
Speaker 3:Awesome. Well, I hope this helps out a lot of people. I mean like even you drew on me.
Speaker 3:I think this is, this can be something, you know, game changing for you too. I mean, honestly, I think I could benefit from it a lot too, but I don't man. That's a. That's a process. It's a that's a hard process. I don't know if I'm ready to commit to something like that yet. I think I'm like, like there was, there was a point in my life where I was struggling bad. I could not get out of bed, I couldn't keep a job, I was crying because I didn't think I'd be able to provide for my family, like I was in a terrible position for such a long time.
Speaker 3:Well, you got videos up of you limping real bad. I was in a very depressed state and then all of a sudden, just for me personally, I started going to, I used the gym and I remember being on the treadmill and just being in so much pain but I was like I'm pushing, I'm pushing, I'm pushing, I just like you know I'm pushing, I'm pushing, I just like you know I I'm. I'm a very spiritual person too and you know I go to God with a lot of my problems and I don't know what it was, but I just kept on praying on it and and all of a sudden I just started slowly getting better and better. And I don't know if the bodybuilding career stuff kind of played a role in it. And you know, taking testosterone and other performance enhancing things, viagra no, I'm kidding.
Speaker 4:Wrong performance.
Speaker 3:That couldn't have been it. It couldn't have been the Viagra that did help me get more children.
Speaker 1:That did not help my ankles.
Speaker 3:But no, so I don't know. Something happened though to where, all of a sudden, it's like I'm manageable now. Yeah, I'm in pain, yeah, I have bad days, but I'm not like in critical condition anymore, so I don't really feel that that need right now to do it. I think the only thing that would help me to do is be able to like maybe run and feel that feeling again, but I don't know if I'm willing to spend that much money to do that. I'm kind of cool being a chill dude who doesn't run much, but until you have to, it's like getting chased.
Speaker 2:What's?
Speaker 3:that? What's that? That new thing that's out the one man or no, 100 men versus 100 men versus gorilla A gorilla.
Speaker 2:Oh yeah, I didn't see that.
Speaker 3:You think 100 hemophiliacs can take on one gorilla? All of our needles and shit. I think we can take on a gorilla.
Speaker 2:I would bring it Okay, all right, let's jump into segment two what's up?
Speaker 4:I said it'd have to be a flat surface. So nobody rolls an ankle Right yeah, anybody, we're done.
Speaker 3:We're getting into the details. What kind?
Speaker 4:of surface.
Speaker 1:Are we working with?
Speaker 3:here. I mean, are there any?
Speaker 2:potholes that we're dealing with.
Speaker 3:That's funny.
Speaker 2:All right. So let's talk about mental health. Living with hemophilia is a mental war zone. What's your take on how the community is doing mentally?
Speaker 4:So I don't know, man, this is kind of like where I differ so much from others. I think you know and this is probably where I might come off as like insensitive or like being a jerk, but really I'm just trying to give like another option on how to view living with hemophilia. To me, we're bigger than hemophilia. We've all said it doesn't define us. Getting bleeds is the least of my worries. Honestly, this shit is easy to me, in other words, and injuries and pain are part of life. Does it get depressing at times? Yes, of course it does, but it does for everyone else too. As an example, basketball was taken away from me and I loved that sport and I got hurt playing it, but you know, hey, so did Kobe and Derek Rose, you know, but they got up and they got back into it and that's basically what I did. And you know, those injuries and arthritis came as a result of it, but I would never change it. You know that was a great time in my life, but eventually basketball gets taken away for everyone as well. For us, it just gets taken away a little bit sooner sometimes. And again, for me the real problems are outside of hemophilia managing relationships, paying your bills, planning a wedding, filing your taxes. Maybe there's something even more extreme like you're in an abusive relationship or your parents are getting a divorce. Those are real problems. A rolled ankle or a jammed finger that caused a bleed is nothing compared to those.
Speaker 4:I believe hemophiliacs get so caught up in worrying about bleeds and getting injured that they forget what the real problems are. And even then I've I've heard, you know, I've heard the saying like you're not depressed, that's, that's just Tuesday, you know. So let's get up, let's get moving, let's start, you know, start moving. You know that's that's what I think really works for me and that's really how I look about. Look at hemophilia and I, I like, I barely think about it, like, unless I'm trying to give hope to others or do a podcast like this, it's. You know, I'm not thinking that I'm a hemophiliac, so maybe that's where I I differ a little bit on things.
Speaker 3:So that's very insensitive of you.
Speaker 2:That's very I'm actually highly offended by that entire spiel you just gave.
Speaker 3:to be honest with you, I mean okay, so listen here, let me I'm going to give my opinion on that. I do think you know, through my experience seeing so many different people with this disorder, that there's different severity levels. And you know I've seen so many people do speeches and talks. You know I've seen guys with mild hemophilia go up there and talk about their amazing accomplishments and then they tell the one story about the one bleed they ever had in their life. And here's the thing that's just not going to relate with everyone. And I've talked to the guys like yourself, people who get one to two to three bleeds a week, or maybe they have inhibitors. And then I've got a buddy in Oklahoma who's got an inhibitor and he is in so much pain all the time, getting bleeds all the time and the medication doesn't work for him, so he's got to use all this special medication to to try to rectify that.
Speaker 3:I just feel like we all have a different experience. I don't know that's kind of like, kind of where I'm at, like I've, I don't want to be. I've personally had to build a stronger mindset to kind of get through a lot of my stuff too. I was raised in a very tough love environment. My mom was very much like you know. Just, you know, dust yourself off, like pick yourself up. But I know everyone struggles differently, so I don't want to push even my mentality on on some people. I think you do have to be a little bit more sensitive to a degree, because where I disagree a little bit is that, you know, I think some people don't have the ability to just pretend like hey, like you know, just whatever, like it's. I don't have hemophilia like whatever, like sometimes it just it's taken control of your life to where, no matter how strong your mentality is, it starts to win. And I mean, what is your what's? How do you kind of feel about, about the whole mental side of everything, like, does it, does it get to you? Oh?
Speaker 2:absolutely yeah. I mean, you know there's always days that that you know it brings you down. You know, especially on high, you know arthritic days and you know you're like, oh, I got to clean the house, but I can't today and maybe not tomorrow.
Speaker 1:Yeah.
Speaker 2:Or you want to do something fun and you just can't and you break you know plans with friends and family and yeah that that's. That's heartbreaking.
Speaker 3:Yeah, yeah. Because even for me, like you know, like I was when I was trying to go in the working force, you know, like just doing all these labor positions, do I have a strong mindset. I wouldn't be where I am without a strong mindset and I would wake up so motivated and try to tackle an eight-hour shift and then my body the next morning, my ankles would be swelled up, I can't get my shoes on, dude. That's demoralizing. I don't care who you are, I don't care how strong you are. That is demoralizing. I don't care who you are, I don't care how strong you are. That is demoralizing.
Speaker 3:You have to get up and provide and your body's saying, nope, I don't care how strong you are. So that I mean that really gets to you. But what I have developed is a mindset of this world does not give a shit, they don't care. The world just doesn't care. So you do have to start saying, hey, there is no handicap card out there, there is no freebie card to success. So if you do, if you have this disorder and you are chasing greatness, you are chasing success. You want to be that top percentage in whatever field you're in. You are going to have to eventually, you know, toughen up and understand that you you don't have a special handicap card to get there and you're going to. You're going to have to find a way. It's not going to be easy, but you do have to develop, you know, habits and a special mindset to overcome what we're going through.
Speaker 2:One of the tough things is you know, um, you see somebody and you are on crutches or in a wheelchair and you see them the next day and you're not and trying to explain to them. You know, I, I know I don't need it every day, you know, and they don't grasp the concept of you need the assistance sometimes and you know, and it could be a stranger, it could be, you know, a friend or anything, and that can beat you down, especially growing up, and you know it can be rough.
Speaker 4:Yep, People can be cruel, yeah, and I'm not I'm not saying that I'm not, you know, insensitive to it, I'm just kind of like looking at like it from a different angle, I think, and where, where I see it is like view, it's almost like not that I'm not a hemophiliac, but everybody else is one too Like they're dealing with it in some sort of way, like taking your medicine. You know I have to do that every day, but I don't. I feel like everybody else is doing that too. In another word, you know, in some sort of way, it's just.
Speaker 3:it's just part of life. That's what we got to do. You were talking about not having any bleeds for like a while. Like dude, that sounds insane to me, yeah. Yeah, I don't even understand what that sounds like, and it's not that I don't infuse like you do you know it's not, you know, it's I and I. I'm doing all the hard work outside of this but, like, no matter what I do, I mean I'm probably getting a bleed a week, no matter how on top I am of things.
Speaker 4:So like random ones.
Speaker 3:Yeah, well, I mean, you know I'm in the gym, so, but it's like you're supposed to be able to. You know, the idea is you take your prophy and you're supposed to be covered Well that's just not the case.
Speaker 3:I mean, I do my, I take my medication like I'm supposed to, but whether it's just doing daily things or whatever it is, but it always does seem to be random. I'll wake bleeds. You know, I woke up today and I had this huge bruise on my thigh and I'm like I don't know what. I mean I didn't get hit, like I don't really know what happened, but yeah, I don't know. So that is a unique, it is a unique approach, but it's tough because I feel like you have to be strong man.
Speaker 3:You do have to build this like resilient attitude. That's like the shirt, it's a nobody cares. Work harder. You know what I mean. Like there's, I think so.
Speaker 3:Like I'm, I love the topic of mental health and I'm super obsessed with it because I work in the industry and I I do get to see a lot of people who go through what I go through, but they don't have that ability to persevere and then that that upsets me, that hurts me and that's like it hits my soul because it's like you know, I do believe that there is a special skillset that you can learn and special ways to go about your life, whether it's new habits you know, new routines that you do, just ways that you prep yourself, you know the food you eat, the working out. I mean, there's just so much that goes into it that could really help. You know some people, but they weren't really taught these things.
Speaker 4:And.
Speaker 3:I'm seeing, I'm seeing people suffer and and you know I look at guys like you, chris, and I look up to you. Know I look up to you because when I look at you I see somebody who's empowered. I see, you know, from the outside, looking in, it looks like you have very healthy relationships. You know you're a smart guy, you're a smart guy, you have a, you have a good position, you're like it. Just, it seems like you, you, you are doing what you want to do and you know, I have always seen that from afar and admired that about you.
Speaker 3:And for me, I don't know what people see, but I've failed. You know, for me it's failed relationships. You know, just struggling to find consistency. You know mental health battles, but I've, I've tried to. You know my whole, my whole thing. You know my book right here adversity equals opportunity. That's been my, that's been my thing. It's. It's like, it's just like. I don't know why all this stuff's happening to me, but the switch that I flipped in my life eventually was, instead of being a victim to every little thing that was happening, it was a new mindset. Okay, what opportunity is in this? Okay, my relationship's messed up, what opera. There's got to be an opportunity here, something that these setbacks where's the opportunity, and just change, and making that my life philosophy has completely flipped things upside down, you know.
Speaker 4:Yep, yep, a hundred percent, and I think that's one of the things that I kind of use myself as well. It's like if you can't be a hero for yourself, be a hero for someone else, and if you can, show them how to live and show them how to go through it, and just give a great example for somebody.
Speaker 3:Dude. No, that's amazing and that's I mean honestly, that's the, that's one of the secrets right there. It really is. It's like, if you can take, put yourself to the side and stop making it all about you. You know you, you change your life. You know you help other people, but you also change.
Speaker 4:You change yourself and Yep, it'll come back to you, yep.
Speaker 3:Yeah, yeah I love that.
Speaker 2:Yeah, there's definitely transformations that you go through growing up. So, chris, were there moments that you wanted to quit or you felt like a victim to this life, like how did you flip the switch?
Speaker 4:Yeah, I mean, I think to me it's just like I don't think it was really like a point where I've wanted to quit, you know, definitely depressed about things that have happened or things that I've had to do, but I think for me it's just like we need to make adjustments. You know, it's just what we do. Like I really wanted to go into auto body coming out of high school but, you know, obviously I couldn't do that. I knew my ankles couldn't do it. So we had to make an adjustment and, yes, that sucks, but, like I said, it's just what we have to do and everyone has to make these adjustments.
Speaker 4:And I'm doing, doing stuff as a hemophiliac or not, and I think that way. Like I said about my medication, I don't view it like I'm different because I have to do this. I just view it like everyone has to do this. So I don't know why, but that's just really what my mindset is and it's almost like all this is kind of normal. Just don't know any different, right, like this is the normal everyday life. I'm not viewing myself as different than anyone. So maybe that's the result of having a great support system growing up. You know, I was lucky. I had great parents. They were split, but great.
Speaker 4:I had friends that would. You know, sit with me and play Nintendo 64 with me because I had a bleed that day. We made the best of it at school Wheelchair you know a wheelchair to get out of class early race the kid that is permanently in the wheelchair. You know a wheelchair to get out of class early. Race the kid that is permanently in the wheelchair. You know. And of course you know there was always some people you know that. You know, I think Carlton mentioned it on one of the podcasts that you know thought you were playing around or doing something like that. But you know, I had a different mindset where I was like, okay, well, just wait till I get off these crutches and I'll see you on the basketball court. Like, let's go. You know what I mean. So you know, like I said, it's all about, I think, making the adjustments to, to overcome those situations that really make you depressed.
Speaker 2:Yeah, I think there comes a time in your life when you have to choose Am I a victim or am I a survivor?
Speaker 3:Oh, yeah, for sure I went through that phase, for sure I played the victim role for quite a while and I I had anger issues and you know I, I would, yeah, so you, and then you have to, yeah, you have to get rid of that victim mentality. Definitely, even people that don't have hemophilia suffer from victim mentality with, like, like Chris said, you know there's so many other things that are out there that you know can, that can ruin people and um yeah, you just have to change your, change your ways.
Speaker 3:All right, so let's see. So what do you? What do you say to someone chris, I'm listening right now who who does feel broken or unseen or isolated by their condition? Because there are, there are a lot of people that are still suffering and, you know, the goal of this podcast is to kind of give them some real ways that they can make some changes in their life.
Speaker 4:Yeah, I think you know kind of what I said previously. You know, you just kind of remind yourself that you're really, at the end of the day, not that much different than everyone else. You just tend to get hurt more, you know. And you like I said, if you can't be a hero for yourself, be a hero for someone else. Give them a reason to get up and move and help them out, and you'll help yourself out in return. Yeah.
Speaker 2:I love that All right. So let's talk fitness. You're in the gym putting in real work. What are the do's and the don'ts for someone with a bleeding disorder?
Speaker 4:I think a lot of this has to do with your baseline disorder. So I think a lot of this has to do with, like, your baseline. So if you were in shape at like a young age, you'll be able to start going to the gym and kind of get right into it, so to speak. I always said the best way to get in shape is to never get out of shape. So, like, I was always active when I was younger and I was never really a couch potato. So when I walked into the gym with my friends I just started doing pretty much exactly what they were doing.
Speaker 4:But for do's and don'ts. Definitely for the do's do stretch, do warm up and do start at a low weight and learn what your body can and can't do. For the don'ts obviously just don't go in there full bore. And I mean really I'll say it again we're really kind of no different with everyone else in that regard. You wouldn't do that if you were normal. You wouldn't just go in there and just start hammering away on 225 on the bench. Give that same advice to non-hemophiliacs as well.
Speaker 3:Yeah, the fitness topic is getting really big. Actually, after the Carlin episode I had quite a few messages, private messages, of people jumping in the gym I don't know if Donna's on and Donna ends up listening to this and she's. She's got hemophilia and and she was really excited about all the information that she learned and she's been asking tons of follow-up questions. She's been in the gym like three weeks already. She's down like 10 pounds or so. She's doing awesome.
Speaker 3:So that's great I love this topic a lot. So, chris, what are, what are some of your go-to exercises that help you build strength without compromising your joints? Are there any specific exercises that you prefer or you would recommend to a hemophiliac?
Speaker 4:Yeah, so for me I would. I would use machines for my target joint areas. For legs I prefer to use a Smith machine for doing squats, so maybe raise the heel on a plate or a mat or whatever they have laying around. Sometimes they have those nice boards that you can angle at different positions. Those are nice. But I would say that's again, you know, that's for anyone, and whatever their target joint is, I would, you know, kind of stick to the machines and in my opinion, if it's your shoulder, then maybe do shoulders on the machine and that takes those kind of like the awkward motions out of it of using a dumbbell or whatever that you could potentially get hurt in. But then I would also follow up with strengthening the joint as well, using bands and you know all that kind of stuff to keep the stabilizers on point.
Speaker 3:Yeah, yeah, that's awesome. That's what I recommend too, for sure, is doing a lot of. I use a lot of cables. I mean, even I'm even more in an advanced stage, but I still will prefer using cables and it just, and it's, it's helped. You know, cables are machines and it helps you keep the tension and the and the you know, on the eccentric and concentric movement. You can, you, just you can. Time under tension. You know they call it TUT time under tension.
Speaker 2:The more time under tension you put the muscle the more you can break it down properly and then rebuild. So what types of workouts or movements should hemophiliacs avoid at all costs in your experience?
Speaker 4:Yeah, see, I think that's kind of like a tricky question. It's kind of very dependent on the person. You need to learn your body. Like I said, you know what's good for one might not be good for the other. Like you always hear, swimming is great for hemophiliacs, wrong not for this hemophiliac Like. For me. That absolutely kills my ankles. I can't swim like at all, and I think that you know that maybe has to do with, like, pointing your toes and kicking.
Speaker 3:I swear to God. I just had this conversation with someone and they I forgot where I was in Florida or somewhere they were. They said they were saying the same thing. Oh, swimming is the best for him. I feel like I go no.
Speaker 4:And.
Speaker 3:I I literally explained it word for word, the way Chris just did. I'm like you do this little thing with your freaking ankles and all of a sudden I get up, I get out of the pool and I'm like, oh my God, I can't. Man, that's the grade a sport yeah, yeah and again.
Speaker 4:And it's probably arthritic at this point, but still it's. It doesn't. It does not help and it would cause bleeds for me previously, you know from even just like slipping around on the bottom of the pool. You know that that was always a problem too. But yeah yeah, I think you just gotta, you gotta learn you yourself what you can and can't do. Yeah for sure, yeah, so just um what.
Speaker 3:So your target joint is it's just your ankles, just my ankles. Okay, so for your leg movements, you said Smith machine is kind of something that you can do. I mean, did you lose? Did you lose mobility in your ankles or is it just pain?
Speaker 4:Oh yeah, yeah, they're totally there. It's almost like they're fused at this point.
Speaker 3:So even with the fuse, the fuse you. You like to put a plate underneath so you can, you can like, while you're doing the smith machine yeah, I sometimes put a plate under my heel, depending on what I'm doing. If I have the brace on or not, like sometimes, that makes a difference that helps you get like more, like, like more parallel to the ground and stuff yeah, yeah, it allows.
Speaker 4:It allows me to like if you your heel up, you're getting able to bend you over more.
Speaker 3:Okay, interesting. I've never, I haven't really tried that. I I kind of I kind of gave up on because the same way, but I'll, all I do is the seating press. You know, you, you just sit down and you, just I do a press and then I do extensions for you feel like a monster when you're on the leg press.
Speaker 4:let me tell you, yeah yeah, yeah, oh, heck, yeah.
Speaker 3:That leg press makes you feel like a beast. Yeah, how do you train smart? What tips do you have for others trying to get in shape safely with a chronic condition?
Speaker 4:Yeah, I think my main tip here is to kind of not be afraid and just to get out there and do it. You know, and you know you're going to get hurt from time to time, but you'll recover You'll. You'll learn what you can and can't do. Just, you know, try to be mindful of not overdoing it while you're while you're doing it. But you're capable. You're capable of doing much more than you think. You know. And again, I'm not, I'm not doing anything special out here, I'm just showing up to the gym. You know, even for non-hemophiliac perspective, again, I don't think people realize how much it really does not take to be in decent shape. You know, I don't follow a routine, I just show up, I just train. And you know I could be. You know, could I be going harder at the gym? Absolutely. I mean, I think I look okay. Could I be more shredded?
Speaker 3:Yes, but like you're not going to get that way just because you spent another hour in the gym.
Speaker 4:That's where you come from diet. Correct, correct and like, but at the end of the day it really doesn't take much. You just got to show up and leave the excuses at the door. Show up with consistency and you know, like, like I said before in our in our introduction podcast you know, I'm not special that you have to be in there for a long time in order for it to be, you know, an efficient session.
Speaker 3:But for me personally, right now, you know, I've I've competed, I've spent hours and hours in the gym, but now my philosophy has completely changed and I'm actually seeing better results. And it's you know, my eating is more on point, and then my, my sessions are no longer than 45 minutes. I mean I can do it in 30, because I'm just getting through it. That's it Like dude, it feels like nothing and you feel just that. 30 minutes of an efficient workout in and out. It'll change your life. You know your mentality, your body.
Speaker 4:And yeah, I heard you and Carlton talking about it last time and you was like 35, 45 minutes. I was like it really doesn't take that much clearly, like look at you guys, it's like that's all you need.
Speaker 2:All right. So, chris, is fitness more about your body or your mindset?
Speaker 4:I think it's definitely the mindset. I mean, we've all kind of heard those studies out there that exercise is so much more effective than SSRIs and antidepressants and stuff and it makes a huge difference in your outlook. You can look at, your body functions better, you start to look better, and then that also contributes to your mental state. So I think it's an overall like kind of positive cycle. But I think at the end of the day it's your mindset.
Speaker 3:For sure, one of the hardest parts of living with hemophilia isn't even the bleeding, it's the insurance system. You've had to deal with this firsthand. Tell us about a time the system failed you.
Speaker 4:So I think one of the hardest things was, you know, for me was losing my local pharmacy. That was like the worst part. I hated that. You know, getting a new insurance by going to a new employer you had to change things around. Obviously every time you do that.
Speaker 4:But now I have to call out to I won't drop names, but a Credo who is awful. I can't stand it. I wish I had a soundboard. Light them up. I can't stand it. But then you know they have to, they have to ship it out and you know I have to be here to sign for it. And you know, before I could just call up my, my local pharmacy and be like, hey, can you, can I get my medication. And they'd be like, yeah, we'll have it over this afternoon, you know, and they would just leave it on the doorstep. Nobody has to sign for it. All that and I guess that depends on where you live and stuff too.
Speaker 4:But still, the worst part about it with the Credo was when they messed up my copay assistance. Somehow they ran through $15,000 worth of copay assistance in six months and then I found out that my copay going forward would only be $180. I'm like that math doesn't work out. You didn't go through $15,000 in. You know six months at $180.
Speaker 4:But you know it's it's the constant battles with insurances on getting the medication covered and you know where can I get it from, and you know it's coming up to the new year and then you have to renew and did the. You have to constantly work with your employer in the HR office to be like hey did, did did something change, can you know? Then they don't know those answers. So then you have to go further and talk to you know not even the regular customer service at on your insurance card. You know you have to talk to somebody else that's specifically in a different thing, and then it's a whole battle all the time and it's awful. It's awful Cause then sometimes you end up with you know a gap and then it's like what do you do then?
Speaker 3:That brings up nightmares. Man that brings back nightmares. It has the thing for me. When I was younger, I was just like Chris is probably a lot smarter than me, but man, I was kind of left to the wolves man on my own.
Speaker 3:I was becoming a young adult, I had no idea how to make these calls, make these calls I was too immature to like understand. Like now, I understand how things work, you know obviously I've been in it for a while now but I had zero idea of how insurance systems work and how you make these, like you know, mature phone calls. You know to get shit done, and so what I would do would, of course, any immature person. You just ignore it, right, you ignore it and your problems disappear.
Speaker 3:Then you go to the hospital, you start racking up bills and bills and eventually you got to say, okay, I need to figure out how to do this thing.
Speaker 2:So what advice would you have for people going through insurance denials like red tape and prior auth nightmares?
Speaker 4:So I would say, you know, leverage your HTC. If they have a great staff and you know that's willing to help you out. I had that at my HTC and she went to battle with the insurance companies for me on my behalf, which you know I'm super thankful for. So you know, you can also leverage the different you know chapters that are out there, your local chapter, who have the resources and experts to kind of like guide you through those kinds of things. And what I really wish there was was a like an organization that would do those battles on your behalf for you in in any situation. You know, not necessarily related to a chapter or anything. Just kind of like an insurance advocate would be like an awesome position.
Speaker 3:I agree. Do I smell a business Dude like, just make that your full-time job. Yeah, just be like you do the. I do feel like we need that because that is a setback you know like you're trying to focus on life and all this stuff, and it's like now I gotta, I gotta dedicate all this time to navigating this right unknown yeah yeah, let's start a new gig, brother. So do you know any organizations or resources that help patients fight back or get support financially?
Speaker 4:yeah. So, like I said, you know the, the htcs. They have their own kind of funding that you can get from them. Yeah, and they'll. They'll, of course, you know, try to help you, point you in the right direction and hook you up with other. You know our things. I think the one that I talked to is the eastern pa chapter of whatever. Yeah, they they were. They were helpful too in going to battle and at least telling me the things that you know I could say, to try to fight back on things and try to even decipher what they were saying and why they were doing certain things, like why the insurance is saying this and why the pharmacy is using your co-pay the way that they are, that I would never even think of. And you know, talk about those. What's that called A PBM?
Speaker 2:Is that?
Speaker 4:what it's called yeah. Whatever those are, yeah. And like how that all works, but yeah but those are. Those are the main two that I see. But you know, if we can get that business up and running, there'd be another one.
Speaker 3:Yeah, man, I'm saying yeah. So I just think the key is to stop being afraid to ask for help. I know that I've talked to so many hemophiliacs and we I think we all kind of like have that we just don't want to ask for help, but we need to start asking. You know asking each other for help. You know hope, I would say you know, speaking of organizations, you know hope, for hemophilia has become a standout organization and it's such a personal experience when you work with them. You know you, you make a phone call and you talk to someone and they just sound like they just, they just really care, you know and yeah
Speaker 3:and they. They have so many resources there. Most manufacturers, no matter what medication you have, now offer some kind of co-pay assistance program. So you know that them and then you know whatever pharmacy you do decide to use besides Acredo, they will help you. They should help you. Cvs sucks, I mean. So I think that some people do need to start having expectations of what they, what a specialty pharmacy, should offer you. And most specialty, most of the smaller specialty pharmacies, have some kind of coordinator or experienced advocate that's willing to go to battle for you too.
Speaker 3:So find an advocate out there that you look up to, that you want to work with, and so, and those, they, they will actually fight for you. You know, we, we do that, we personally do that. We both work for a specialty pharmacy and we will go to battle and we actually have. You know, we have huge team meetings and what's awesome is that we all have a special skill set in a different area. So we'll be like, oh, go talk to Steve about this, go talk to Dustin about this, and we start pulling strings and we just start making stuff happen for people. So there are people out there that will do that kind of work for you. The Pan Foundation has been a huge one too. They help pay insurance premiums, and I actually just signed up to loan last week. Last week I just got a call back. Their wait list just opened up and they're going to start paying for my premium.
Speaker 4:Nice yeah, and there's also programs from the manufacturers that are really helpful. I basically did that whole insurance battle that I had with Acredo and them misusing my copay assistance, you know, and that copay assistance comes from the manufacturer. So I reached out to them kind of told them whatever was going on and they're like, yeah, we got you covered, you're going to get free product. I'm like, okay, cool, I don't know how I qualified for that, but sure let's do it. And it was I couldn't. You know that was amazing. They did that for two or three years almost and I was like it was.
Speaker 3:I couldn't believe it. That's amazing. Yeah, I've gone through an experience like that too, where I was taken care of for a while. So, yeah, that's awesome.
Speaker 2:So if you had the power to change the healthcare system for hemophiliacs, what's the first thing you'd fix?
Speaker 4:So I think there's a couple of different things there. I'd say that you know being able to choose your own pharmacy would be good and automatically have that medication covered Cause you know, like, once you have a diagnosis, why do we have to constantly go through this?
Speaker 4:Like the medic. It's all medically necessary, so just approve it. So you know, I think you should be able to have more than also a month's worth of medication on hand. That's always like so annoying to me. Like why do I have to keep ordering this? Like just give me. Give me a whole year's worth.
Speaker 3:That doesn't expire within that time, and I'm like what?
Speaker 4:what are we doing? Yeah, like, why are we running? I'm going to need it.
Speaker 4:Like you, with you you know, and then you know, lastly, let's just make those gym memberships covered by insurance as well. I think that would be, you know, a big benefit for everybody. It'd be a benefit for the insurance and it'd be a benefit for the doctors and like it's that whole sick care versus healthcare kind of thing. You know, and you know there are some programs that that that will cover, um, your, your gym memberships. They have ones that actually I I'm part of one, I pay my insurance $40 a month and then I get access to like all the gyms in my area. But you know, I think stuff like that would be be helpful for everybody. And, you know, getting that mindset over to, um, you know, healthcare instead of sick care.
Speaker 3:Yeah, man, that's awesome, just the freedom. Have freedom of choice, you know, to you know healthcare instead of sick care.
Speaker 3:Yeah, man, that's awesome. Just the freedom. Have freedom of choice. You know, to you know for for patients again, and you know we're in the industry and we've noticed you know there's so many it's becoming like a monopoly, you know, and there's so many carve outs now, and so it's just, you know. I think some states are opening up now I forgot what state it was just changed where they're giving everyone freedom of choice. I don't know the name of that state now, but it's starting to slowly happen again where that's opening up.
Speaker 4:That's good to know.
Speaker 3:Yeah, I mean, I wish I knew the state.
Speaker 4:It ain't Pennsylvania. I'll tell you that.
Speaker 3:No, I don't know, I forget, but one of the states it's getting like that again. But yeah, it's been a pain to watch. You know, and that's happened to me a lot of times too. I wanted to go with someone and then they're like, oh no, you have to use express scripts or you know a credo Credo is amazing. But yeah, chris, thanks so much, man. This has been a raw, honest and powerful episode. I appreciate your vulnerability and your leadership To everyone listening, whether you're living with hemophilia, caring for someone who is, or just trying to stay strong in your own fight. Remember this struggle builds strength, mindset moves mountains and your story has power. Follow Chris Mill on Instagram at M-I-L-L-Z-Y 2370 to stay connected with him and his journey, and if this episode spoke to you, share it. Tag a friend, leave us a review on Spotify or Apple Podcasts. I'm LA Aguayo. This is my co-host, drew. This was another episode of the Hemo Life Podcast. Keep rising and keep striding forward.
Speaker 1:Thank you for tuning into 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 a group of extraordinary achievers and pioneers. On behalf of LA Aguayo and the entire Hemo Life team keep pushing forward, strive for excellence and remember you are the architect of your own destiny. Until next time, stay strong, stay inspired and continue on your path to an elite life.