Latest / Giving Pain Purpose with Lyndsay Soprano / Redefining Healthcare for People with Disabilities with Chanda Hinton
Transcript
- Lyndsay Soprano (00:00.334) soon. Lyndsay Soprano (00:03.694) One of the things that scares me the most about my CRPS and disability is that at some point I truly will not be able to walk anymore. I'm in my wheelchair, you know, about 50 % of my life. Some days I'm better, some days I'm worse. Or my biggest fear is that I have to have my legs amputated. And then I will be like 100 % disabled in my mind, but like from my waist down. And it scares me. And I used to say, I'm heading down to Lowe's. And for those of you who don't know what Lowe's is, it's a home improvement store. And I would always say, I'm on my way to Lowe's because what I had started to say to everybody was that I wanted to go buy a chainsaw. So, and to cut off my legs. So one of the things that my mom asked me for her birthday present a couple of years ago was, can you please not mention Lowe's anymore? And so I don't, but I still think about it all of the time. And my feet are purple on some days, some days they're hot and red and the other foot's white and cold. And it's like so gnarly, the kind of pain that I go through, you never see, never expect it by looking at me right now. But from my hips down right now, I wanna go to Lowe's, right? And the pain is bad, the anxiety is so bad and the fear is worse. And it doesn't seem to be getting much better as I am not necessarily getting all that much better. I'm just getting better at mindset and how I take care of myself and the modalities that I use in order to care for myself, which is not involving Western medicine almost in the very little amount of Western medicine that I have to use because I find that infrared sauna, massage, swimming, CBD, THC, ketamine, chiropractic, acupuncture, reiki. All of these things are helping me to get up every morning and do what I'm doing with you, for you, right now. And our insurance companies don't wanna pay for all of it. They don't wanna pay for any of this stuff, and I don't understand why. And disabled people need more than the average patient does, duh, to say the least in these other modalities instead of slicing us and dicing us open over and over and over again. I'm sick of it, and my guest today got sick of it as well. Lyndsay Soprano (02:20.312) Her story is incredible and inspiring and one that I cannot wait to share with you guys. So today we're going to chat with my guests about changing healthcare for people with disabilities, creating the spinal cord injury waiver, turning policy into healing, bringing holistic care into the system, like I was just talking about, expanding access statewide, because we know that, that is a big problem in the United States of America, if we can call us united anymore. the personal toll of advocacy and much more. So without further ado, I would like to introduce you to my beautifully amazing guest today, Chanda Hinton. Hello, darling. Chanda Hinton (02:59.95) Hello, thank you so much for having me. I'm excited to have this conversation with you and just love all the things that you just mentioned and how you streamlined that conversation just so well and to like all the great conversations that you and I are gonna have today. And just thank you so much for what you're doing. Lyndsay Soprano (03:17.102) Yeah, I know. Oh, thank you. Wait until you hear what she's doing. I'm nothing in comparison to this one. She's incredible. So Chanda is the senior executive director of the Chanda Center for Health, leading the fight for holistic, accessible health care for people with physical disabilities. In 2009, she championed Colorado House Bill 1047, creating the spinal cord injury waiver, now the CIH waiver. which brought acupuncture, massage, and chiropractic care and more to individuals through Medicaid. In 2021, her efforts expanded these services statewide, proving that everyone deserves the right to heal body, mind, and spirit. So I am rolling out the red carpet for you, babe. And I know you've told the story a million times in a million different ways, and you're gonna have to tell it again for us today here. But I would like to start with what I am calling a tragedy. Chanda Hinton (04:00.549) to the three. Lyndsay Soprano (04:10.975) That happened to you when you were nine years old. That changed the trajectory of your life and let's take it from there. Chanda Hinton (04:16.845) Yeah, absolutely. So when I was nine years old, I was being babysat by two young boys and we had decided, there's portions of my story. It's so funny. Sometimes I'll go into the pieces of it that I don't always go into and today I'm going into it. So it's very interesting. at one moment we decided to have popsicles, right? And so I loved red ones, ran to the freezer to get a red popsicle and Lyndsay Soprano (04:36.365) I love it. Chanda Hinton (04:45.863) you know, they were, they were brotherly baby. Like they were like big brothers to me. so teasing me and like, no, you can't have a red one. So I just took a purple one and I went back and I snuck a red one. Well, not even knowing and believing that the reality of the words that was coming out of, you know, David's mouth and Trevor's mouth was that, shouldn't use names. Probably those were fake names anyways, just so you know. Lyndsay Soprano (05:09.742) Fake news. Chanda Hinton (05:12.367) fake names, it was Charlotte, Roger, Charlie, yeah. So basically when they, let's just shoot her then we don't have to worry about her taking our popsicles. Like totally like a kid thing to say, not said in any level of like hatred, reality, just like teasing. And so one of the young boys had picked up a gun. It was, Lyndsay Soprano (05:36.846) sure. Chanda Hinton (05:42.17) there was a bullet in the chamber. And so it was on safety, but even though when he had lifted it up with the bullet on it or the bullet in the chamber, it still discharged. And the bullet 22 rifle entered the back of my neck between C5 and C6. So instantly spinal cord injury severed my spinal cord. I am a quad. I function from a power wheelchair. I don't have any mobility or sensation from basically my armpits down. That's a little bit sporadic, but that for me is, I live independently with a vehicle that I can drive accessible. I have a service dog. So I'm just living the life of knowing that paralysis was, I've embraced it to a level to which like, wow. Okay, there's a reason for this. I've always had that. I think my mom instilled that into me. And so that has always been kind of that mantra, my, my healing story to like, what does this really mean? And what am going to do with it? And it's really funny, because it's like being shot was like the chapter one. sick from the over utilization of the Medicaid was like the chapter that really took it to the next level. Right. So to think about like, Lyndsay Soprano (06:53.268) Yeah, right. Chanda Hinton (07:03.995) I had to go through two levels of tragedy to really find like the meaning behind what I find why this occurred for me and the purpose of life. Cause I think that many of us are always trying to find our purpose, right? So that's, I could go into more detail, but that's the big gist of it, right? And so that was my injury. was not, was in 91 and. Here we are and I'm so excited to be telling you guys about, you that was that first level of tragedy and getting into more of that healthcare component where the levels of things changed even more for me where I had to take a stand and make a difference. Lyndsay Soprano (07:49.614) Yeah, and I mean, like I mentioned on my show, my tagline for the show is giving pain purpose because I had to make a decision within myself whether I was going to let this completely destroy me and my spouse and my family and my friends and my livelihood and my job and my business and all the things. I had to make a very cognitive choice. And I remember the exact night that it was where I was like, I'm not going to go that direction. I got to go this direction. And that's when this whole thing started, this show, because I needed to at least know that I was gonna be waking up for a purpose and that I was going to be helping people in some way, or form. Whatever that was gonna look like, I didn't know. I just knew that I had to do fucking something. Yeah. Chanda Hinton (08:35.579) Exactly, And it's so funny, because sometimes we don't always know it right away. Like, we'll sit in pain, we'll sit in suffrage, and then it becomes where you then that knowing happens, right? And so I always find those moments to be, know, extremely powerful, because it's like, you don't always find it. I mean, and some people can find it right away. Like, I've seen people that have been injured, and it's just like, sometimes I see them and I'm just like, I'm so Lyndsay Soprano (08:50.092) Mm-hmm. Chanda Hinton (09:05.623) proud of how, I guess how they're like moving through it and embracing it so quickly. But then you've got to be careful too, because like, as we are in in society, like we always want people to be so inspirational, and we want to make them be heroes and all these sorts of things. And so there is a lot of pressure around not allowing a lot of us to go through our pain and suffrage without having to have this level of expectation that comes with it. And so Lyndsay Soprano (09:29.848) Mm-hmm. Chanda Hinton (09:34.551) I'm really mindful of that as well just because I know that I experienced that and I know that other people, know, just in the community experience that as well. Lyndsay Soprano (09:45.228) Yeah, for sure. mean, we get there's there's pressure all around us. I mean, we've got our TED Talks and we've got our book writing. We've got all of these master classes and these summits and all these things. We're like, my God, which one do I choose to hop on board with? What can it where is my advocacy going to be the best? What advocacy route am I going to take? How am I going to do it? And it reveals itself to me on a daily basis. Like, holy crap, I'm supposed to be doing this right now. Like, OK, let's go. Let's go. Right. the cheerleader in me right now. So yeah, so after you had this just horrible thing, I just can't stand it that there are guns in your house that even to begin with that we had access to. I know even the 90s, was something even 80s, 90s. We didn't have the kind of issues that we have right now where there's all these mass shootings and stuff like that. So we can get into gun control on a whole different episode, but I don't want to talk about that right now. Let's not do that. But when. Chanda Hinton (10:18.575) Let's go. Chanda Hinton (10:38.843) Yes. Lyndsay Soprano (10:44.526) After your injury and all of the healing that had to go for, you had like so many health issues and then it led down to chronic pain and you were down to like 59 pounds. How old were you? Like 21 years old? Yeah. Chanda Hinton (10:55.971) Yeah, I was 21 at the time. So from nine until 21, you know, it was basically, hey, you've got a spinal cord injury and here's all the secondary conditions that come with having a spinal cord injury. So all the way from bowel, bladder, muscles, spasticity, tone, everything. And so I found myself just sitting sedentary in a power wheelchair and consuming a lot of medication, knowing that insurance was not covering any level of ongoing movement or other other I mean, just basic physical therapy or other services. So you can only assume that that type of regimen is only going to be sustainable, sustainable for so long, which for me, it wasn't until I was 21. So I started to have some pretty severe chronic pain. And I think partly was because I wasn't moving my body like you get pain when you don't move right into some Lyndsay Soprano (11:48.59) of Chanda Hinton (11:50.874) capacity. And so what happened is I went to my physician, I'm just like having this really weird chronic pain, like it's getting to the point where it's really it's so intense that at times it's almost like, I'm not able to breathe. not really I'm not sure what's going on. Like I had been really having like pretty intense anxiety because the pain was so severe that it felt like, you know, like you were dying. And so I would call 911 all the time I go to the ER and so they just masked it with narcotics. And that was right when the opioid epidemic was like at its very, very peak where it's like candy, candy, candy, here you go. And so I started to take that because they were like, well, you know, that's another secondary condition of a spinal cord injuries that, you know, typically people will get chronic pain. And so I just, I'm listening to the healthcare community, right? I'm doing what I think is, Lyndsay Soprano (12:22.158) Of Chanda Hinton (12:44.859) the right thing to do and it turned out to be really, really bad. So I basically from nine years old to 21 overutilized the medical model to the point where I had to use medical intervention to save my life. So I got down to 59 pounds, had to be hospitalized, was being fed intervenously, I had a feeding tube put in. And so it was basically like where we have to save your life. failure to thrive in that moment. so great, I mean, they saved my life. Yay. But then the thing was, was that so after this medical intervention, it was like, okay, well, go back and do what you were doing before. And I'm like, no, this is, this is not how this is gonna happen. Because for me, it's just again, that it's just this vicious cycle, right? So it's like, how long will it be before, before I'm back here in the same situation? And so I have to Lyndsay Soprano (13:26.644) No. my God, I just want to strangle these people. Yeah. Chanda Hinton (13:42.288) give credit to my sister who had studied yoga for a very long period of time. She just, you know, really was able to see my situation, my lack of like, my lack of ability to not be able to move my own body and how beneficial it would be to utilize and substitute these really ancient types of services to give my body what it deserved, but couldn't get on its own. And so, she had proposed to us, like, let's look at acupuncture, massage, chiropractic, physical therapy, like yoga, like all these things. And coming from a rural community in Nebraska, we're all kind of like, what? Like, but at that point, was, yeah, what does this stuff do? Like, this is, well, I mean, still to this day, some people are like that, you know, that woo-woo stuff. And I'm like, my goodness. I can't even believe that's even still, it blows my mind. Lyndsay Soprano (14:24.908) What's acupuncture? Lyndsay Soprano (14:33.896) Well, well, give me a break. phrase I know Chanda Hinton (14:39.291) But yeah, exactly. And so, the utilization of those services, like dramatically changed. And so I was like, my goodness, just saved my life. All of these services. I sit in front of the people every single day and say, integrative therapy saved my life. And I needed to know what was the big secret because I'm like. This is ridiculous that somebody has to go through so much suffrage in order to find it. And then upon finding it, advocate to a level that was just like beyond belief because it's just like, what do you mean? I'm saving you money. I'm not going to the emergency room. I'm not calling 911. I'm not taking all these crazy meds. Like I'm saving you money. And guess what? I'm also feeling amazing, have an improved quality of life, I'm employed and I'm paying my taxes. I'm giving back and quite frankly, like I feel happy to be alive. I'm not like, you every day just struggling to stay alive. And so all of those details were really, really powerful to me and just really launched me into a whole exciting journey that, you know, you and I will get into that just You know, it was almost like how you had said it was almost that in that moment, there was no other there was no other path than that because it was almost as if the path was like pulling me down the path. You know what I mean? I'm just like, well, this is where I'm going. and so in so in things landed so intuitively and happened in like and when you when you're in those spaces, you just sometimes even like step back and you're like, how's everything happening? So like it's almost a little bit too good to be true, but I just always look back at those moments saying like, wow, the universe, whatever it is that we wanna identify with, that was really pulling me pretty strongly in a way that was like, we, what's the cheer that are here? Let's go. Yeah, let's go. Lyndsay Soprano (16:53.582) Let's go, L-E-T-S-G-O. Let's fucking go. And that's exactly, and I'm in this, and so interesting, the timing of this conversation too is I'm in the middle of doing this. I'm starting a whole new business that's wrapped around, and I actually am gonna talk to you about this off air, because I don't wanna drop the bomb right now. But there's this incredible thing that I'm starting, and I'm starting to like the fire that's underneath me, and I would have never thought if you would have asked me 10 years ago, five years ago even, that I'd be talking about doing what I'm gonna be doing and how all of these people that I have met through doing this show have not only given me strength and love and support, but also the listeners. See, I told you I was gonna cry. I was crying before we even started this, by the way, with her, so. Chanda Hinton (17:40.729) Keep it going. Lyndsay Soprano (17:41.558) out the tissues before I hit record. No, because it's tears of joy because it's so exciting to feel like I'm going to be able to do something because of this that happened to me. Mine's nothing like yours. Not that I know you don't like people comparing it. I don't like it either because everybody gets their shit. But it's still like I'm not I can walk around my house. I can do things totally for myself. I don't I don't have it. Chanda Hinton (17:56.123) Mm-hmm. Chanda Hinton (18:01.455) Yeah. Yep. Lyndsay Soprano (18:10.996) So tragic like you, but it has absolutely changed me as a person entirely, entirely. And so we have to redefine what our healthcare system looks like because what kind of care are we getting? It's sick care. You like you mentioned about money, like, okay, how many MRIs and CTs and ultrasounds and all of the things that we've gone through. And then, I just started doing acupuncture and now that is not happening anymore. Chanda Hinton (18:32.068) Yes. Lyndsay Soprano (18:40.598) and you won't pay for it. Even though I'm paying my taxes and I'm employed and I pay for an ultimate premium PPO health insurance plan. And they're like, sorry, we don't do chiropractic. We don't do acupuncture. We don't do any energy healing. We don't do any of this, but we're going to pay for all of these other modalities that are so incredibly expensive that they're bankrupting our country when they have issues as well. It's evasive. Yeah. Chanda Hinton (18:42.17) Yes. Chanda Hinton (19:02.735) Yeah, invade, invade. It's not like it's invasive. It's costly. It's just there's I mean, I always believe there's a time and place like when I was injured, like I, I needed some some severe medical intervention to save my life. Like, that's not what I wanted to over utilize as a part of like sustaining my wellness. Like, that's not how we sustain wellness. that's sustaining wellness is all through being proactive and preventative and using less invasive less Lyndsay Soprano (19:16.152) Sure. Lyndsay Soprano (19:19.883) No. Right. Chanda Hinton (19:32.444) Um, you know, things that are that it shouldn't impact your body in a negative. should always be bringing out more of the positive and have the more side effects it has. Like again, it's, it's not preventative or proactive. And so, um, yeah, it's. It's still to this day, even though like that was back in, you know, 2005, which is like 20 years ago, it's still to this point where I find myself and. the staff over at the Chanda Center for Health, having to educate people and fight that integrative health and collaborative health and disability competent care is like essential and should be equitable. And I'm just like, why are we having conversations again, that just seems so intuitive, but yet we fight every day to have to explain that to people. so. Lyndsay Soprano (20:29.518) Yeah, exactly. It's about talking to a whole group of white men about women's healthcare. You're like, what? We are in the wrong people in this room. Yeah. Chanda Hinton (20:35.611) Yes, yes. Very much so. And oftentimes, like you said, it's like the relatability, if it's not there, you just sometimes don't always get the message across because we always know that we don't understand a situation until we either have a family member there or we're there ourselves. And it's like, if we just had people in leadership that were in spaces that really had more relatability to people, I think we would be doing a lot, a lot, we would be just doing much better in so many facets of life. Lyndsay Soprano (21:18.062) Absolutely, yeah, well said. So you mentioned the Shanda Center for Health. So you wanna talk a little bit about what we've got going on there? Because it's pretty amazing what you're doing. Chanda Hinton (21:26.107) Yeah, so as I indicated, you know, I advocated for myself, I got those services for myself dramatically changed my life. And then I was like, Hey, this is pretty spectacular. Why isn't this available to people? really went dove into like research like in my it like, I kind of felt like is this is this an isolated incident? Am I the only one that's like, with a spinal cord injury having this experience? And this is what it's like. And the answer was no, like my story was just Lyndsay Soprano (21:49.656) Sure. Chanda Hinton (21:55.77) like everyone else's story, but again, there was no resolution of like, well, what's going to be the sustainable preventative outcome? What's going to be the, the resident, I I wouldn't say resolution, like the resolution of, of wellness for people with long-term disabilities. And so what I did is with that research and having conversations, like, you know, being in your twenties, it's so beautiful. Cause you get to be like, well, even today, like the, Being naive is such a beautiful experience for me because I remember calling up my insurance company and I'm just like, so, you know, I need you to cover these things because by covering these, it's more affordable and I'm not, I tried to explain the cost analysis and they're like, oh, we don't cover those things. And I was like, let me talk to your supervisor and it was so great. Lyndsay Soprano (22:44.844) love you. Let me talk to your boss. Chanda Hinton (22:48.443) And the lady's like, she even kind of giggled a little bit. And I was like, okay, well, explain to me what, like, tell me what's going on. Like, what is it that I need to do? And she's like, well, with you being on Medicaid, you need to go to legislative, it's a legislative process, you have to get the legislative body to actually agree to fund these services. So that was it. I was like, okay, well, got it on it. So yeah, it would be so fun to find that lady and be like, Lyndsay Soprano (23:10.872) Got it, I'm on it, I'll call you back. Lyndsay Soprano (23:17.376) Right? Yeah! Chanda Hinton (23:19.195) that day where it's like, and guess what? So then, so I got ahold of a legislator. They, you know, pro bono ran me through the first like legislative process just so that I could get myself familiar with it. And then after that, we presented in 2009, we presented a bill to say, Hey, Colorado Medicaid, let's fund integrative therapies, particularly acupuncture massage, chiropractic for folks with spinal cord injuries. Lyndsay Soprano (23:22.185) Yeah Lyndsay Soprano (23:33.377) Wow. Chanda Hinton (23:48.016) Denver Metro area, let us prove to you that these services will do exactly what it is that they've done for me. The reason why there's not a lot of other people sitting next to me saying the same thing is because it's not been available. So if you allow us to be a pilot program and prove it to you and show you the cost effectiveness, then we have something more to... then that gives us the data that we need to say, hey, like this is a reality and it's cost effective and it's improving quality of life for our population on Medicaid. So the bill was passed. And I think one of the biggest components that I take away from that is that the bill was really pushed by consumers, myself and others that I did find that was benefiting from these services. but it wasn't pushed by the providers. I didn't go out and find acupuncturists and massage therapists to say, come down and try to push that with me because I really felt that the consumers were going to be the most powerful voice to indicate to them that it's impacting my life and my health. I don't want them getting confused that this is some sort of interesting way for providers to gain. revenue, even though most providers would be like, why would I be a Medicaid provider anyways? But there was that agenda. There was to be very, very sure that they didn't get confused. And most of the legislative body themselves would use these services. So they're like, I couldn't even imagine I use these and I'm fully, like, I don't have any level of condition or any level of disability going on. And so therefore, Lyndsay Soprano (25:17.4) Right. Chanda Hinton (25:41.372) I can't imagine what it would be like for you to not have that. And so there was a lot, I loved that relatability. I loved the way that we approached it. And then from there, when we passed that bill, we then became, we started a nonprofit to systemically change it, but then also give services here and now. So because legislative can take a long time, it can take a while to even after you pass a bill to get it implemented, did, we would raise money to make sure that those with disabilities would get access to these services through donor dollars. And so that still exists today. So now we're a Medicaid provider of that systemic change that we created. Plus we have our donor dollars. So that way, let's say somebody just learns out about that particular waiver, they show up and they're like, my goodness, I didn't even know. I have to figure out how do I get on the Medicaid or how do I transition from this waiver to this waiver? And so. in that in between our donor dollars will start them on services until we can get them transitioned onto that particular waiver. So then, so it's a churn rate, right? So it's like, okay, we're gonna upfront you and then eventually Medicaid will start paying us for those services because we as a nonprofit want to be sustainable too. So like we can sustain wellness and health by sustaining and utilizing those Lyndsay Soprano (26:45.389) Hmm. Lyndsay Soprano (27:00.012) Sure. Chanda Hinton (27:05.765) those funds that we just happened to be an advocate for way back in the day and now we're a provider of it. Lyndsay Soprano (27:12.982) It's pretty amazing stuff. I mean, come on guys, like what are you doing with your life right now? Okay? of the couch and go do something with yourself. No, I mean, but it's so true. I mean, we hear people that just whine and complain and they don't do anything to make any changes in their life. And it just makes my blood boil because it does because it's like, hold on a second. We are sitting here fighting for our lives in one way or another, certainly from a disability perspective. But also there's a lot of people that aren't necessarily disabled, but are. Chanda Hinton (27:37.467) We know. Lyndsay Soprano (27:49.486) 100 % ill all the time from a chronic pain, from chronic illness, from trauma that has happened to them. That's how I ended up in the position that I'm in. And so facing those things, know, okay, they don't pay for our, they don't pay for, out of network providers. All of the out of network providers drives me crazy. But I found the perfect doctor for me that knows, thinks the same way that I do, has the same values that I have, wants to advocate for me, but yep, well, sorry, we're not gonna take care of them. You need to... Chanda Hinton (27:51.675) Yeah. Lyndsay Soprano (28:18.882) pay for out of pocket for that. So it's just like, goes on and on and on and on with all of these things. And all we're trying to do is get better and not be more of a burden on society. Not that we're burdens, but we are when we're ill and we're continuously staying ill. And, you know, I'm tired of being, I'm sick and tired of being sick and tired, you know? Yeah. Cause you had to have been faced with so many different, just like, Chanda Hinton (28:37.691) Yeah, oh absolutely. Yeah, I just... Lyndsay Soprano (28:45.912) pillars and boulders and things that you had to break down in order to get this legislation done. I my gosh, how incredible. Chanda Hinton (28:53.861) Well, I think that, I mean, there's that part of it. you're out advocating for something bigger while you're also trying to like, you know, take care of yourself. I think that's one of the things that I find pretty miraculous when it comes to the disability community is it's like, I just can't believe how fierce it is because it's like, you're having to struggle to wake up every day. I mean, I have it at... I have an attendant that has to wake me up every morning and go through a whole like morning routine. And it's like, and the ability, the the amount of ability that I have to show up, really, at times, throws me for a loop because I'm just like, I don't know, I don't know how I'm doing it. And so the other day, it's something like one of my close friends who I've known for quite a while are both quads. And he's just like, how do you do it? And I honestly like, when I left the conversation, I was like, I even asked myself, I was like, wait a second, how do I do this? I think, and it all came down to the word like, like passion, like there's got, there's gotta be some level of deep passion that allows me to see through or work through the pain that otherwise maybe I wouldn't be able to because I truly at times surprise myself. And then there'll just be days now that I'm in my 40s, I'm just like, shit, I worked too hard. I worked and then. Lyndsay Soprano (30:30.717) Amen sister. know I'm creeping up on 50 here really close and I'm just like whoa. Well, it's also it's not just the physical thing that we have to do getting up getting ready getting the why everything takes longer takes longer for me to get focused. It takes longer for me to read a book. It takes longer than than all of these things because the chronic pain brain is brain fog and then you're taking you know, I wake up and I'm like had CBD and on THC and I have a muscle relaxer and all and I wake up in the morning. I'm like, all right, let's get going. But there's also the emotional cost that goes behind all of the work that we're trying to do too. I mean, it's emotionally taxing to have conversations like the one we're having now because we give everything that we've got to where we show up. Even though it might be, I might be crying right before I get on doing it. You know what I mean? Because that's what we're here to do. That's what we're here to do. And we've made the choice that we're going to do it. And if I let somebody down, I let myself down 20 times over. Chanda Hinton (31:13.381) Yep. Chanda Hinton (31:18.919) yeah. Yep. Chanda Hinton (31:28.239) Yep, No, yeah, and think that even just pushing through sometimes when you really like, have nothing to push, but I think that we're, I think folks with disabilities are really good at pushing through those components because, you know, we've had to do it in other capacities and ways in our lives that it's just like, Lyndsay Soprano (31:28.29) by doing that. Yeah. Chanda Hinton (31:54.406) than when it really comes up whether it be for work or not, or impacting someone's life, or telling your story to change something. It's almost like it just takes over. And I think that that's a good thing. Even if you were like, 30 minutes an hour before, you're like, yeah, I can't push through. Well, then all of a sudden you just find the ability to do it. And so I just really, I love our work at the Chanda Center. all underneath one roof, do acupuncture, massage, chiropractic, physical therapy, care coordination, behavioral health, and primary care. And so all of that is underneath one roof with various different providers and all of them collaborate together for the end user. So that way an individual's not having to identify, well, do I listen to this provider versus that provider or they're saying conflicting information? It's like, no. Lyndsay Soprano (32:33.943) thing. Chanda Hinton (32:50.851) I'll let you two talk and then you get back to me because the two of you are telling me two different, like there's no need for us to have to navigate the difference between when providers are professional enough and should have the wherewithal to be able to collaborate and communicate and get back to the end user. And so I think that's a very valuable tool that we provide. then, and then just the lens of competency where it's like, there's so many times that I show up. with my injury and I'm just again reminded that the world is just not yet designed for people with disabilities and it just continues to be very frustrating when it's just general things like going to the store or going to do this that or the other like just those those everyday maybe tasks but when I don't feel well and I want to show up and I want to be taken care of which is like the health care system that's the last place I believe I should be running into barriers and so many people run into barriers in healthcare that they stop showing up. So then we see again, more chronic conditions utilizing the ER as their primary care, just doing these like crazy things that we shouldn't be doing within our healthcare system. And so I have made it an effort that the Chanda Center will always be a place that makes an individual with a disability feel as though they belong from the moment that they park their car, they come into the building, they go into a treatment room and go back to that vehicle. And so all the places in between, even the bathroom, even the interactions with people, if your urine bag is full, you can ask anyone inside that building, my urine bag is full. Can you empty my urine bag? Like no one's gonna freak out. Like it's just those kinds of things, right? It's like, we're just human, we're all human. And so, yes. Lyndsay Soprano (34:42.498) Yeah. Like we all pee guys, like come on. No, but it is, it's a remarkable, it's remarkably astoundingly insane that our practitioners don't speak with each other. And that is something that you just gave an example of somebody that has just said, I'm not showing up for it anymore. And I'm that person. I gave up and I went, I'm going cold jerking on everything. Chanda Hinton (34:49.179) Exactly! it's just... Chanda Hinton (35:07.098) Yep. Lyndsay Soprano (35:11.98) and I am going to find what my baseline is. I'm gonna find out how I really feel. I'm gonna find out what my actual weight should be instead of being super, super tiny and skinny, because I lost a ton of weight. I was as small as you, but I was down to 98 pounds. So I was really tiny too. I wasn't getting enough nutrition because I was sick all of the time. And it was was constant. All I was doing was getting pushed around and popped around and like sliced and diced and all of those things. And it was no doctors were talking to another doctor. And you're right, people use the ER as their general practitioner. It's unbelievable. And I am not, I'm not going to lie that that's one thing that has had to happen in my world recently over a couple months time. had to go the ER constantly because I do not have a general practitioner that I can actually go to right now because I start Concierge doctor after Concierge doctor after Concierge doctor, and they're all charging a massive amount of money and are not giving me at Chanda Hinton (35:59.676) Yeah, right. Lyndsay Soprano (36:10.67) all what I need and it is super fuck straighting. so it's just, know, I want to really understand what true healing looks like for me and for you and for everybody else because what we're doing right now isn't doing this and doing the job. And we're all doing these, you know, side little like side hustles for our body. We're like, well, I guess we're to try this guy and see if this works. And I guess we'll try this and Chanda Hinton (36:14.479) Yes. Lyndsay Soprano (36:38.892) One of my girlfriends who also has CRPS, she's been on this show twice. She's really struggling right now. We kind of like teeter-totter, like I'm the one that's struggling and then she's doing okay and then I'm the next one. I'm like, let's get ourselves even, Steven, where neither of us are suffering the way that we are. But she's going through the whole gamut right now. It's like test after test and hospital visit after hospital visit and she's not getting any better, she's getting worse. And it just breaks my heart into a million pieces. Chanda Hinton (37:01.786) Yeah. Chanda Hinton (37:05.347) Yeah, and I for me, it's almost like, you know, because I always thought like, because we're the only organization that's doing what we're doing, like in a tiny little community in Lakewood, Colorado. And sometimes, yes, that's remarkable. That's great. I love that. But it's like, the thorn in my side that I kind of that feels really heavy and sad is that it's like, it's just so it's just the right way to do health care that I just I don't know that we're ever going to see it be handled that way. And that is just a sad, scary place to like, feel because I'm so grateful that I was able to but then I look around the world and I'm just like, my goodness, like this is just like, so there are times where I just have to like, mean, look at us. You have to stop going down the rabbit hole because it's just like. Lyndsay Soprano (38:03.182) I know, I know, now I have like 72 stories that just popped into my head that I wanna say. Chanda Hinton (38:08.941) And that's where I'll go. I'll go into this room. I'll go into this really like kind of like, well, this dark place where it's kind of like, well, I mean, quite frankly, I wish that I wish that we could have we could have influenced so many, many more. And maybe it will. Like this is only I'm only been there for 20 years. I hope that it goes beyond my time. I hope that because I've seen other organizations that have been started by people that are like, you know, now they're celebrating their Lyndsay Soprano (38:10.446) Totally. Chanda Hinton (38:36.699) 100th year and it's just like I bet you that individual had no idea that it would get to that level and I only hope that's where it's gonna go and guess what the great thing is that Maybe I won't know or maybe I will yeah, yeah, yeah. Lyndsay Soprano (38:51.758) We're gonna lose our minds before we know what's happening around us, you know? If I haven't already lost mine already, my goodness gracious. But it is true, it is sad because you are in a small community and I'm in Los Angeles area, so it's like there's just a million people. And I've got a girlfriend of mine who was in an ATV accident many, many years ago and broke her neck and she's a quadriplegic and she's struggled with. Chanda Hinton (38:59.962) Yes. Lyndsay Soprano (39:16.864) all of the things that you're talking about. She does physical therapy and stuff, but all of the amount of money that's had to been raised for her and all of the charity events and all of these other things, just to get her to be able to get PT is insane to me. it's crazy. Physical therapy. We're not asking for like stem cells to regenerate things. I mean, I've also done stem cell therapy. That actually made me get super worse, by the way. I'm not saying that it doesn't work for people, but that particular place where I went, Chanda Hinton (39:30.563) It's crazy. It's crazy. Lyndsay Soprano (39:46.146) completely destroyed my right leg. It's like, great. So it's just things like that where we're grasping at straws, trying to find some relief and we're putting them together and half of the puzzle pieces are under your couch cushions, you know, and you can't put the full puzzle together. Not when you don't have a team that's working together for you. And I think that that's what makes your place so incredibly special. And I hope that others are gonna... Chanda Hinton (39:47.991) wow wow Chanda Hinton (40:12.399) Yeah. Lyndsay Soprano (40:15.264) hop on the bandwagon. And I'm sure there are people that are thinking about doing the same thing or are working on it, or we just don't know about them. Who knows? But you know, by spreading this conversation and having this message go out, I mean, that this is just another part of your story, you know? Chanda Hinton (40:23.161) right? Chanda Hinton (40:30.243) Yes. mean, and it always takes like, you know, we've we've thought about like, okay, do we need do we need to look at like, you know, some sort of like, you know, capital like an investor like a, you know, but then to what degree does that investor change the model so dramatically that then it doesn't really, it really doesn't do what it was meant to do, because it just got, you know, it just it just it got too big for its britches to you know, yes. Lyndsay Soprano (40:46.637) Right. Lyndsay Soprano (40:57.006) turns into a machine instead of a place that's body, spirit, mind, the whole thing that you, your heart and soul in it. Yeah. Just another franchise. Yeah. We're not a Chipotle. Chanda Hinton (41:01.965) Yes. So there is a catch-22. I know. There's a catch-22. Exactly. Because it's like, you want to be available, but you want to have that same model and delivery and execution and intention. It just gets lost. So it's always like that staying small, but then yet, how can you hold all of that to be true and you know, Lyndsay Soprano (41:20.237) Yes. Chanda Hinton (41:31.279) hopefully have someone that can really have the capital to do the pieces that could make it flourish as long as they can hold true to those values. Lyndsay Soprano (41:43.222) Yeah, the values, your mission, your philosophy behind it. Because if you're just putting people in the seats and putting people in the other seat and you're not really, not everybody is on the same team as far as your model and how you want it to work, it ends up, you know, going all crisscross applesauce in a whole different direction. And then it's like, well, great. Now it's making money, but is it doing what it actually supposed to be doing in the long run? We don't know. Yeah. Yeah. Chanda Hinton (42:09.595) Yep. Correct. Lyndsay Soprano (42:12.28) Well, we don't want that to happen, young lady. You are not Chipotle. Chanda Hinton (42:16.345) We do not want that. Lyndsay Soprano (42:17.932) We will not be having this happen, not on my watch. So outside of the Chanda Center, what else are you up to? Chanda Hinton (42:28.315) Well, that's great. That's a really great question. I would say that recently I have definitely had the ability to step back a little bit with some really great, you know, executive leaders, which I love because I, it's been given me the time to get back to myself knowing that this little body, mind and spirit is really, it's tired. You I just got done saying to my mom the other day and my sister, it was just like, I mean, goodness, I've been since nine years old, just really, really, really pushing it for myself every day and for others every day. And so it feels good. so with that, it's just really in I would say it's kind of evaluating what that kind of transition looks like, because I have honestly put so much of my time and love and energy into my work. so, yeah, granted, I mean, I still still have hobbies and, you know, hiking and being in Colorado and seeing beautiful outdoors and vacationing and all those various things are still there. It's just, you know, they weren't priorities to me. And I would also say that they, now that I have time, be available for some of those things. I've also noticed that my body doesn't always enjoy some of those things. So I'm... I'm kind of like working through some things where it's just kind of like, wow, all the hard work I put in, like, did it, you know, just kind of evaluating what it is that's going to feel really good for me, like within my spirit, as well as my body, because sometimes they just are not on the same level of like, yes, yes, where my spirits like, let's go, my body's like, yeah, Lyndsay Soprano (44:12.616) They're not on the same page. I know they're like yo catch up with me over here. Yeah Chanda Hinton (44:21.477) So, Lyndsay Soprano (44:23.682) Well, I can tell you right now you're talking about accessibility around the world, right? And I just recently went on, we did a cruise, which I told my husband I never wanted to go on and he said this will be the last one and we hated it. And so I said it's the last one. So I'm very happy about that. But. Accessibility around the world is really challenging. mean, I've done the Colosseum in Rome, I've done Versailles, I've done all of these different incredible places in my wheelchair and I'm manual. So I use my puppy like do 5Ks in it and I get some upper body exercise when I can do, when I do those things. But, oh, God, hello? Chanda Hinton (45:06.423) smell. Lyndsay Soprano (45:07.256) Go to voicemail, get out of here! Chanda Hinton (45:09.499) I don't know what, there it goes, there we go. Lyndsay Soprano (45:11.746) Like Bruce Almighty just sending out all of the text. Bruce Almighty just called. I love that. my gosh. But the accessibility around the world is very challenging. A lot of these, I mean, it's cobblestones everywhere you bloody well go, but it's also, find to be, it's not as accessible here in the States as I would expect it to be. And that drives me bonkers. And one of the things that I hate is the parking spot thing. Chanda Hinton (45:14.171) Right? Or just on the computer. Chanda Hinton (45:34.629) Yes. Lyndsay Soprano (45:41.358) There are more Tesla chargers at our mall than there are handicap spots. And there was a lady the other day, I was going to the mall and pulling out my chair, I'm doing my whole thing, blah, blah. And I hate going to the mall, but I had to. Anyways, so I get out of the chair, I mean, I get out of the car, I get in my chair and this lady pulls up and she parks diagonal in a handicap spot. And you know the blue lines that are there for your vehicle to open up on the side for you to get out of. Chanda Hinton (45:46.874) Yes. Chanda Hinton (46:08.304) Yay! Lyndsay Soprano (46:11.096) She's parked on an angle in that area and she just like pops out of her car and just bebopping. She has the placard. So, you know, that's, she's allowed to, but man man, I yelled at her and made her repark her car. She did, she did. She felt like a piece of crap and I'm glad you did. I hope you're listening to this episode, but I really want like the accessibility of the spots. If you have a handicap pass because you had a surgery on your foot, Chanda Hinton (46:20.027) Right? Chanda Hinton (46:27.203) And she did. Good for her. Chanda Hinton (46:34.863) Right? Lyndsay Soprano (46:40.898) two years ago, okay, and you're walking just fine, don't use it, don't use it. Like it drives me insane and that is like a little tiny bit of advocacy. So I've been writing to all of these shopping malls, asking them to add more handicap spots because I don't understand why Tesla charging is more important than you being able to park your car and get out and live in the world excessively. Makes me, makes me, it's, my gosh, my, Chanda Hinton (46:45.445) Totally. Chanda Hinton (47:04.791) Yes. Well, and sometimes just, no, it's one of the things I know, I know it's one of the things that like, I, in I feel as though there's been so much education that is done over and over and over and it just, it's just not ever going to get through. And so it's, it unfortunately does take like a Lyndsay Soprano (47:09.784) Blood pressure just went up, Janda. Chanda Hinton (47:30.543) very grassroots kind of like you said, individual advocate, as individual advocates to say what we need to say because there's honestly no level. I I think there's a, what I love is I found a lot of, there's like commercials in other countries. There was one like where in Poland, it was really funny. This guy, this guy came home and another guy was like a guy in a wheelchair. It was like, he just finished, finished like, Lyndsay Soprano (47:32.492) Yeah. Chanda Hinton (48:00.336) having a night with this guy's wife. And he's like, and then at the end it was like, how does it feel to take the parking spot, right? Meaning like, it's so good. Lyndsay Soprano (48:09.39) I swear to God, I think I saw that when we were traveling just recently, because we were overseas for a couple weeks and it was an impossible trip for me. But I swear to God, I saw it because my bestie came and met my husband and I, and then we sent him home and we kept going and we kept traveling. But it was, I mean, it was challenging, but those are the kinds of commercials that you remember. Chanda Hinton (48:14.349) Yes, it was so good! Chanda Hinton (48:31.385) Well, and I'm like, why aren't they, why aren't those more on like more like played in the United States? Like you get to see that. Like it's just, so for me, yeah. Lyndsay Soprano (48:40.908) Well, honey, without getting on my soapbox, don't hold your breath on that one right now. Right now we're screwed. We're all screwed. Congratulations. No, we just have, we have a different set of eyes of things that are important right now than what I feel are deemed to be important like this kind of conversation. Chanda Hinton (48:45.271) no, I won't. I, it's just, it just, yes, we're all, we're shut down. Chanda Hinton (49:03.031) absolutely. Lyndsay Soprano (49:04.616) And we've got to stand up and we've got to rise and we've got to advocate for ourselves. We've got to advocate for our loved ones. We've got to advocate for Chanda. We've got to do all of these things because without us, we're going to just get lost and left behind. And we have two good and amazing stories and spirits and hearts to be held back and pushed back and given up on. And I refuse to let that happen. So, and I'm glad that you're the same way. Chanda Hinton (49:29.881) Yep. Yep. Lyndsay Soprano (49:33.602) You're just, you're an inspiration to me, that's for sure, my sweet love. Yeah, thank you. You too. Yeah, well, you guys have so much that you've got going on. Maybe you should write a book in all of your spare time. Chanda Hinton (49:37.848) I love that. It's been amazing getting to know you and just like, yeah, it's been awesome. Chanda Hinton (49:51.92) You know, I know if somebody wrote, I mean, I've been listening to books on tape, I'm like, I wonder why, you know, there's been times where I've wanted to but then it's always like, you know, I know friends that have written books and it's just like they, you know, some of them get far and some other ones don't and so then it's just like, and then I find myself just not ever knowing when's, when's the beginning and when's the end because it's like while I'm writing it, it's like other shits happening and i was like i add that to the book and i gotta add that to book so like what is the point like i'm just like so i kind of just stopped stop really like messing with myself about it i'm just like yeah that's okay Lyndsay Soprano (50:34.072) Well, at the end of the day, you can start dictating things here and there and save them. And then you can do a mishmash of them later. I'm trying to get my sweetie to write a book because his life has been insane. And the stories that he have, I mean, I don't want them to die with him. You know, I want them to be at least dictated so I can make something of it. But anyways, it's just it's been such a pleasure to get to know you. Ditto, babe. This has been so great. I'm so glad you got here. We're closing out season three with you, babe. And Chanda Hinton (50:37.38) less. Chanda Hinton (50:47.534) right? Chanda Hinton (50:56.089) Likewise, likewise. Chanda Hinton (51:02.937) Yay! Lyndsay Soprano (51:03.596) What a great way to end a season. So before we hit the dusty trail here, is there anything that you'd like to leave our beautiful listeners with? Chanda Hinton (51:11.321) you know, I just say check, check out our website. Cause I think that, you know, any level of, you know, whatever, there's so many people that probably listen to this. And so it's like, just, you know, if you're in healthcare, really think about what it's like for people with disabilities to be in healthcare or how, how it is that if you're not an individual with a disability, how can you step up to the plate and really like advocate on behalf, knowing that if you're, if you're kind of a, I don't lack of a better, but if you're kind of a cog in that healthcare wheel, like, you know, there's so much we could be doing a lot better. And I think it, again, I know that the systems really push down the individuals that are within the system. But I think that that's what movements have been all about, right? And so I just think that, you know, disability movements, there's, I always say that, you know, history repeats itself and there's just been I feel like there's a time and a place where I think we might see something where disability just really advocates for itself again in a more very large, you know, manner. Because I just think there's too many things that are out of control when it comes to this population. So, yeah. Lyndsay Soprano (52:26.99) You got that right. mean, and there's a couple places that, mean, there's so many things that we could be doing and we're like, well, you know what? There's a new show out on Hulu that I need to binge, so let's do that instead. We all need our binges, but we all need to also be put a little bit into our world and make our world a little bit of a better place together. That's at least what you and I are trying to do. Chanda Hinton (52:50.991) Yeah, yes, yes, I agree. Lyndsay Soprano (52:52.896) All right, guys. Well, you can find Chanda all over the place. Instagram Chanda Center for Health. Her website is ChandaCenter.org. She's on FaceTube. FaceTube? Yep, FaceTube. She's on Facebook, YouTube. She's on LinkedIn. She's all over the place. So please connect with her. Get involved in your communities. Help advocate for people like Chanda and others like myself. This is we can only do it with the help of each other, holding each other's hands and giving each other some big old hugs and opening up our mouths and using our voices. So loud and proud. it's been Chanda Hinton (53:02.203) I'm super... Lyndsay Soprano (53:22.346) A pleasure to have you here with me today. Thank you so very much. You are exclusively invited to share this advocacy field of VIP pain journey together. Let's get to the heart of how to heal with you by my side and Chanda by your side. Please follow the pain game podcast wherever you digest your podcast content. We will be there. Visit us at the pain game podcast dot com and follow us on all the socials. Thanks for listening, my little VIPs. Catch you on the other side. Chanda Hinton (53:25.316) Likewise.