Endo Battery
Welcome to Endo Battery, the podcast that's here to journey with you through Endometriosis and Adenomyosis.
In a world where silence often shrouds these challenging conditions, Endo Battery stands as a beacon of hope and a source of strength. We believe in the power of knowledge, personal stories, and expert insights to illuminate the path forward. Our mission? To walk with you, hand in hand, through the often daunting landscape of Endometriosis and Adenomyosis.
This podcast is like a warm hug for your ears, offering you a cozy space to connect, learn, and heal. Whether you're newly diagnosed, a seasoned warrior, or a curious supporter, Endo Battery is a resource for you. Here, you'll find a community that understands your struggles and a team dedicated to delivering good, accurate information you can trust.
What to expect from Endo Battery:
Personal Stories: We're all about real-life experiences – your stories, our stories – because we know that sometimes, the most profound insights come from personal journeys.
Leading Experts: Our podcast features interviews with top experts in the field. These are the individuals who light up the path with their knowledge, sharing their wisdom and expertise to empower you.
Comfort and Solace: We understand that Endometriosis can be draining – physically, emotionally, and mentally. Endo Battery is your safe space, offering comfort and solace to help you recharge and regain your strength.
Life-Charging Insights: When Endometriosis tries to drain your life, Endo Battery is here to help you recharge. We're the energy boost you've been looking for, delivering insights and strategies to help you live your best life despite the challenges.
Join us on this journey, and together, we'll light up the darkness that often surrounds Endometriosis and Adenomyosis. Your story, your strength, and your resilience are at the heart of Endo Battery. Tune in, listen, share, and lets charge forward together.
Endo Battery
Accessible and Affordable: Revolutionizing Care for Disabilities With Chanda Hinton
Send us a text with a question or thought on this episode
What if you could transform an overwhelming challenge into a mission that changes lives? Our guest, Chanda Hinton, knows firsthand. After surviving a life-altering spinal cord injury at just nine years old, Chanda has turned her personal journey into a powerful movement for holistic healthcare solutions. Join us as we explore her inspiring path from patient to executive director of the Chanda Center for Health, where she champions comprehensive care for individuals with physical disabilities, including pivotal therapies like acupuncture, massage, and chiropractic services.
In this episode, we unravel the legislative triumphs that have paved the way for integrative therapies to become accessible and affordable. Discover the relentless advocacy behind the 2009 Colorado House Bill 1047, a groundbreaking bill that expanded Medicaid to cover essential services for spinal cord injury patients. Chanda sheds light on the ongoing struggle to achieve legislative recognition for conditions like endometriosis and the systemic changes needed to align healthcare with modern medical advancements. Learn about the cost-effective and life-enhancing benefits of these integrative therapies and the barriers that still exist in accessing them.
Finally, we tackle the pervasive healthcare barriers faced by individuals with disabilities, from inaccessible medical facilities to biased healthcare providers. Hear Chanda's insights on overcoming these obstacles through the Chanda Center's initiatives, including the establishment of an adaptive gym aimed at promoting health without financial strain. This episode is packed with powerful discussions on strategic planning, community support, and the relentless advocacy essential for driving systemic change. Don't miss the invaluable lessons Chanda has learned while building a nonprofit dedicated to transforming disability healthcare.
https://chandacenter.org/
Website endobattery.com
Welcome to EndoBattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery, grab your cup of coffee or your cup of tea and join me at the table. I'm joined at the table today by my guest, chanda Hinton.
Speaker 1:Chanda embodies resilience and vision. As the executive director of the Chanda Center for Health, she leads a nonprofit dedicated to providing holistic healthcare solutions for individuals with physical disabilities. Her journey began with a personal mission, rooted in her own experience, to create meaningful change. Chanda's advocacy culminated in the passage of Colorado House Bill 1047 in 2009, establishing critical health care options under Medicaid for spinal cord injury patients in the Denver metro area. This landmark legislation not only expanded accessibility to acupuncture, massage and chiropractic care, but also to set a precedent for statewide benefits.
Speaker 1:Originally from Nebraska, chanda holds a bachelor's degree in communications from the University of Denver and a master's in nonprofit management from Regis University. In her commitment to extend beyond professional achievement, she cherishes cheesy 80s chick flicks and engaging and enriching conversations within her community, all while prioritizing time with loved ones amidst her demanding role. Chanda Hinton's story is one of resilience, leadership and unwavering dedication to improve healthcare accessibility for all. Please help me in welcoming Chanda Hinton. Thank you, chanda, so much for joining me today. I am really excited for this conversation, not only because you are a fellow Coloradan, but you're also just passionate about your craft, your work, your advocacy, and I'm really excited to touch on this and our conversations have already been flowing. So thanks for joining me today.
Speaker 2:Yes, I'm so excited as well, and I just love the intersection of some of the things we've already started talking about and bringing the opportunity, as you had said, to the table just to talk about this in a more intimate way, but mostly just because, again, that cross section between, like you know, endometriosis, but then also like when you're a woman living with a disability, what does that look like for them? And so I'm thrilled and honored to be here. So thank you for asking.
Speaker 1:Yes, I am also excited because, as two people that run nonprofits, it's fun to kind of bounce ideas off of each other and see some of the similarities between chronic illness, chronic pain and some of the things that we struggle with as people trying to advocate further for specific causes, and not even just that but for humans. I mean, I think you do a fabulous job, especially here in Colorado, of advocating for those with disabilities in general. But just gosh darn, I'm excited just to have this conversation. For those who don't know who Chanda Hinton is, can you give us some background on who you are and what you do and why I'm so excited to get to know you better.
Speaker 2:Yeah, absolutely so. I am the executive director senior executive director, of the Chanda Center for Health, which is a health clinic in Lakewood, colorado, that provides preventative and chiropractic, physical therapy, care, coordination, behavioral health all underneath one roof with this very intense or, I should say, intentional ability to serve them, where disability competence is our core, meaning that we are there and excited to serve people with disabilities. It's not as though that is a population that's like oh, when we're done serving the others, we'll get to you. It's like no, like that. That is who we want to serve and who we want to serve well in all the ways, and so we make sure that it's competent, disability competent. We make sure our building is to the space where people feel so welcome there and that the barriers to getting into the building or getting on treatment tables, or having face-to-face eye conversations with people at the front desk, like all of that's broken down, because we really want them to run towards healthcare and we also want them to have a sense of belonging and we also want them to have the space feel therapeutic rather than white and sterile, right. So that's who I am in terms of this workspace, but I of course it comes with the background story which I would be happy to share, and we can do that. So that's what we do.
Speaker 2:We've been around for nearly 20 years us doing this amazing work and maybe going in at a later point of like how we got to where we were with not only philanthropic dollars but changing legislation and Medicaid and there's some other things we can go into, but the backup. The reason why I'm so passionate about this type of care and creating an organization and continuing to push that evolution of healthcare and make it more accessible to others is because of my own personal story, and when I was nine years old, I was accidentally shot in the back of the neck between C5, c6. And so I was instantly paralyzed. It's a complete injury, which means that there's no the spinal cord was severed, meaning no full recovery. So I function in everyday life in a power wheelchair. I have a modified vehicle where I zoom around to all of my duties.
Speaker 2:I have a beautiful, sweet service dog. That is just heaven to me as well. But those are kind of how I function every day. But why that injury created what I shared earlier was because, you know, when I was shot, I was thrown into a medical model rightfully so, to save my life, as I was just shot, but also into the medical model as it relates to how was I going to address my spinal cord injury for the rest of my life.
Speaker 2:And what that initially looked like was, after rehab, I would sit in a power wheelchair and I would consume a ton of medications for the rest of my life, and after doing that, for probably a decade, that was not the way that my body or, I think, many, many people are able to sustain, in the sense that it wasn't a vibrant. I was constantly sick. The medication would cause additional secondary conditions. So when I turned 21, I started having chronic pain. I was added another medication, which was a Percocet, during 2003, when the opioid epidemic was at its peak, and so I became extremely sick by utilizing the traditional medical model, and from there I got really sick. I became bed bound, I weighed 59 pounds. I needed to be hospitalized for medical intervention, which I find a little bit interesting, like I was shot and I used medical intervention to save my life, but then the overall utilization of medication then resulted in me needing medical intervention again to save my life. So it was interesting to see the difference or the variance between those two scenarios, knowing that medicine has such a beautiful place in our lives and, at the same time, can also be a detriment to our lives, and so that balance we're seeing those variances and finding a balance was really really critical to me, and so that's when I started doing integrative therapy.
Speaker 2:I wanted to make sure that I balanced the medication that I needed to take, the medication I didn't need to take, but then also substitute acupuncture, massage and movement to my body, massage and movement to my body. Given my paralysis, I had no ability to move anymore, like. So if I could have, if I could have gone to a gym, awesome if I was still moving. But because I can't move, I have to rely on other humans to move my body, and that doesn't mean that that's any less I still should go to the gym. And if that looks like it's a person that's doing that for me a physical therapist, an adaptive yoga provider, a massage therapist. It's essential to living a vibrant life, so I'm going to shut up now because that was really long.
Speaker 1:No, it's beautiful because I think the takeaway for me on that too is that a lot of us are given the opioid route because that's what's accessible with insurance, that's what's accessible off the cusp, that's what they know. But for those with endometriosis it doesn't really help us all that much. In fact, sometimes it does more harm than it does. Good, I know for me personally my kidneys have taken a toll because of all the NSAIDs that I used prior to my excision surgery. So I mean, I understand that from a very real point of view, because a lot of us are given these types of medical therapies but not necessarily it's not helping us, it's not allowing us to have a better quality of life and get our bodies moving and really supporting our bodies, and so that is exactly what a lot of us are feeling and I think that it's just a very close-knit crossover in disability. It's just that for a lot of us with endometriosis, ours isn't always visible disability.
Speaker 2:Yeah, physically visible.
Speaker 2:I think what's beautiful about the crossover where disability lies is that we have to all just be really open to that.
Speaker 2:Disability looks very, very different ways and we have to remember that not all of them are visual and so and to also not create any sort of judgment around which has more severity, because the severity is how each individual it affects them.
Speaker 2:So if you look at it more as a person versus a group, it's like you know, I am never going to sit back and say someone that doesn't have paralysis as their disability is somehow suffering less, right, like that's just not correct.
Speaker 2:And so I really appreciate you saying that, because and I love and I think it's important to reiterate the part that you mentioned is that oftentimes providers are physicians, they want to do good by us, but yet they're so limited by the bureaucratic or the coverage of insurance. Suggest the things that would be very beneficial and amazing and life changing to us, because it's almost as if they're suggesting something that then there's no money to follow it, and I think that that puts them in an awkward position and that's why we just have to keep changing legislation and funding and create educating those providers to funnel that funding towards their ability to say hey to a patient. Guess what Like? I'm aware of this and I want to offer you this opportunity, or go look at this, because then that frees them from having to suggest something that someone is not going to be able to have access to.
Speaker 1:Yeah, which brings me to my next point. You have created a heroic feat in challenging the legislative but also the medical system by almost partnering with Medicare or Medicaid and getting coverage for those integrative therapies. Which, how? How did you do this? How, what were the challenges behind that? Because, my goodness gracious, insurance is going to be the death of me in and of itself, because it's, I mean, how we. Most of our integrative therapies are not covered by insurance if we are trying to seek intentional, very specific care in these integrative therapies, because the providers themselves can't afford to have their practice based on insurance. So how did you integrate?
Speaker 2:that, yeah, and to answer this, I also want to just be mindful of the difference between, like, private insurance and Medicaid, right, like, I know that there's a difference there, and I think that one of the components is that the population we serve is predominantly lands within that Medicaid as their primary insurance because of their long-term disability, like the various things that come with that level, such as home health care, durable medical equipment, like all of these really intense needs that are very, very costly. So I just want to be kind of mindful of that difference, knowing that all insurance needs to cover it, regardless of whether it's Medicaid or not. I just wanted to kind of indicate that component, and so my drive was that we needed to at least have Medicaid recognize that one. These services acupuncture, massage and chiropractic were cost effective, but they were also going to improve the quality of life for folks with long-term disabilities because of how complex their health care is, as well as the level of secondary conditions that come from it, and so what I set out to do, and what we did in 2009, is that we proposed to the Colorado legislative body that we wanted to prove to them that these services would absolutely reduce that cost of savings, but then improve their lives.
Speaker 2:And so we passed a bill in 2009 that, for the first time, colorado Medicaid started funding massage, acupuncture and chiropractic care. And so what that is? It opened up this opportunity for those on Medicaid to get more proactive and preventative services, rather than again just sitting in their wheelchairs and only taking medication. And so I'll be honest, there is not a major secret to doing this. Like I I tell people every day I'm like, if I could do it, you can do it, just trust me. Like I have no special degree I have no. Like I am a person of passion that set a determination and connected with a lot of people and made it happen, and so I truly believe everybody has the ability to do it.
Speaker 1:They just need to be empowered and passionate about it.
Speaker 1:I think the biggest takeaway there because, honestly, none of the advocacy work if you want to do anything, advocacy you can't do it.
Speaker 1:Without passion, you'll burn out instantly, and so, especially when you're dealing with legislative pieces, which brings me to my next topic is that legislative pieces for endometriosis are not inclusive for hardly anything, because it's a lot of times categorized as either a women's health issue, but not even that, or a menstrual disorder, and so we don't get the disability oftentimes that maybe we warrant, because, as you and I were talking about previously not on the podcast, but before this we were talking about just the disparities in legislative wording and how we can get disability funding or even get funding for these types of integrative therapies, because we don't qualify for those Medicaid benefits because they don't recognize it as a disability, even though a lot of us are out of work for a week during our cycle or as it progresses, it gets into the whole month where you can't really function.
Speaker 1:You are crippled by pain and crippled by the fact that maybe our muscles are atrophied from not being able to use them, or maybe you have sciatic endometriosis or who knows. But what I'm saying to that is is that we have to do better in the legislative piece and getting more people the assistance that they need for those invisible illnesses like endometriosis. It all matters, but you have to be passionate about it, that's for sure.
Speaker 2:Oh yeah, no and absolutely, and I think that you know what it is that you just spoke to, and the community that surrounds this particular disability. It's so essential to elevate the topic, elevate the need, elevate the funding sources, because that's where change happens. We live in a world, we live within systems, where things were not always recognized right, and so we've created systems that live in a place where we're getting certain types of support, but it doesn't mean that it's all accurate or correct or that I think for me, the biggest thing is that it can't stay the same. It's got to continue to evolve, and so, because we, as humans, are finding more and more, either through research or either as we evolve as humans, we're finding more things out about our bodies, and that then just needs to naturally align with the resources that then need to support the new evolution. That they have to go hand in hand, right? You can't just discover something and be like, oh well, it's been discovered. It's like, okay, well, now the system needs to follow that that need.
Speaker 1:Right, which is kind of what your story is a prime example of. It was good to have that medical intervention, but that wasn't sustainable long-term. You needed something else to sustain your ability to live life, and I feel like that's true for a lot of us. With endometriosis specifically, you know it's taken us years for a diagnosis. Then it can take years for proper treatment if you get that, but you're still living with pain, and having these options to us is essential. But what are some of the most predominant barriers to having access to integrative therapies?
Speaker 2:I can name mine but in your opinion, what have you noticed? Yeah, so I would say just well, one, the understanding of integrative therapies. Right, because I think that there's different definitions of just even those terminologies. Right, that integrative therapy shouldn't be really identified any further as either a complementary or an alternative. It should really be a part of mainstream. So I feel like just the concept of integrative therapies, separated from any level at which, what population it's serving or whatever, just that in itself, I think, still has a lot of evolution to have.
Speaker 2:So there's that piece, I think. Then, once you're educating and making sure that we're all getting, you know we have a country of healthcare providers and the National Institute of Health and you know all the various things to recognize that. That's one barrier. After, outside of recognition, then it's just the what I see as the funding sources to then fund something that maybe remains unrecognizable. For those that do recognize it, ensuring that the resource of funding is adequate, right. So I think that another barrier could be like oh, we recognize that we're going to give you this much and it's kind of like, well, in order to really make an impact on somebody that's living with a long-term disability, which means it's not going to go away. This is a lifetime disability, so it's got to come with a lifetime level of service and treatment in order to sustain and keep people in a good place where they're not going from acute to then non-acute, acute to non-acute Like. You've got to create that baseline, knowing that, yes, of course we're all going to have our outliers right, we're all going to get maybe sick or have an episode of some sort that's going to take us off that baseline. But if we can get to that baseline, to where we can at least function really well in society and engage with people and work and all the various things, I think that's what's essential.
Speaker 2:So recognition, the funding, and then, lastly, the barrier is the education, because once you start getting recognition, you start getting funding. Then it's making sure that those that are living with a disability are aware of the funding opportunities or the coverage, as well as the all of the quote unquote. I call them brokers of health care that need to be reminding them or letting them know not even reminding, just letting them know up front that hey, within your benefits, you have access to this because it takes a lot of moving parts. You have access to this because it takes a lot of moving parts, but I think that, yeah, when you're dedicated, you can absolutely, you know, make it happen. And of course it's going to. There'll be, there'll be baby steps and there'll be grand steps, and and you just keep going.
Speaker 1:Yes, I mean you have to one foot in front of the other and there's times that we get pushed back a little bit and you just have to keep pushing forward, because there's going to be barriers and there's going to be blocks and I think, as good as it can be, there are still challenges within our health system, A lot of challenges within our health system, especially for those with endometriosis and other chronic illnesses that aren't recognized by the healthcare community as being a chronic illness.
Speaker 1:I think moving forward, pushing forward and not allowing those barriers to stop you or deter you, will get you leaps and bounds, if not for you, for future generations.
Speaker 1:You know, and that's kind of why I do, what I do is not necessarily for me the damage some damage has been done to the body, but I do want to change the future outcome and make I mean, I can't do it alone, we all have to all do it together right, but be a part of changing the narrative behind endometriosis. Changing the narrative behind the delay in diagnosis from seven to 10 years to one at most. Changing the barrier to proper treatment from additional seven to 10 years or never for some people to proper care and treatment being the gold standard to everyone, allowing that to be accessible to everyone. But I do feel like excision and surgery is, I say, step two. I think the integrative like the pelvic floor, physical therapy, acupuncture, chiropractic is really step one to help support your body and get it to where it can walk through surgeries or medical traumas much better. But then you are likely going to need this support long term.
Speaker 2:Oh, absolutely yeah, Because I mean because we all have to be aware that there's probably going to be a procedure or a surgery, but any, anything that you can do on a prevention level prior, during, after I mean, those are essential for all, all humans, let alone probably even more critical for folks that are living with any level of disability. And I love what you said. Same for me in terms of, like the center. You know the work that we're doing if it benefits us you and I personally, absolutely, but our primary goal is that we're impacting so many other people. And I love what you said about future generations because I know today the work that I do.
Speaker 2:I probably am having an easier time still running into barriers and challenges, but I am confident that I'm having probably more successes in this lifetime because of the work of those with disabilities prior to my time, and so I often find it as like this is my ability to give back to those that you know really made accessibility, like I think about the people that you know started to make, like you know, fights and rallies to make things physically accessible for us, and so it's kind of like you know you did that and I'm going to do this and, before we know it, several generations and centuries from now, we'll have people that are benefiting from the work we've done today and taking it to the next level.
Speaker 2:And I just think that that was such an important thing to do, because I oftentimes think that we can get stuck in our, we get in our own way a little bit, and I think that that's really an essential piece is that you're part of the whole.
Speaker 2:What I also would say is that, which I know you and I probably are on the same page about this too, is that I never dismiss the reality that not everybody wants to be in the work that you and I are doing, right? So I think that's one thing I always throw out to people too is that your impact can even be small. Right, because sometimes going through these barriers and going through these challenges are so exhausting that it's like you don't want to dismiss that piece, because that's such a deep reality and that not everybody has to or wants to do the deep work, but maybe they just want to contribute on the sidelines, and those sideline level support is so critical to those that are in the deep components of it. So I just wanted to mention those two things that kind of came up as a result of our conversation.
Speaker 1:Absolutely. And you know, and I've always said this, sometimes those people who support those that maybe are more visual to the public eye, the ones that support us, are the most crucial, because they're the ones really that are the pillars of what we are the most crucial because they're the ones really that are the pillars of what we are able to do.
Speaker 1:They're the ones that hold us up when we don't want to do it anymore, and that support piece is crucial to anyone, especially when you're walking through your own chronic pains and illness, to have people support you along and encourage you, because this is not easy work to do and neither is supporting sometimes. And something I want to come back to is the fact that we talked about barriers for those walking through the trenches of disability. What are some of the hardest barriers that those with disabilities face in the healthcare system?
Speaker 2:Yeah, I think that my sense granted, being a woman with a spinal cord injury, there's some that apply to that component of it, but there's bigger pieces that comply to all of us, right? I know that with the work that I've been doing, it's been very devastating to see that the center is more accommodating and physically accessible to people with disabilities than what we've always seen as the traditional model, such as physician clinics or specialty clinics, meaning, like, if you want to go get your mammogram, there's not very many machines that can do that, that are accessible to people. So the thing is is that we've been living 30 years post the ADA, which was created in 1990. And we are still coming up against the most disparaging civil rights violations in our healthcare system that really, to me, are completely unacceptable. And this has kind of been the new project that I've been working on and I believe again that these are providers that went to school, wanted to become a physician, because they believed in healing, they believed in wanting to help people and again, they've been caught up in the bureaucratic process of it because, you know, they only get paid so much by so many individuals in order to make what it is that they need to do get done, and they're limited in terms of what is covered. And so and some of these, I would say, providers are within institutions that if the institution doesn't support it, they as a provider have very little authority to make any level of change. And so I see all of those one the systems being the issue, and then I also see our own kind of state and federal government needing to step up to the plate and just say, hey, there's some violations occurring and compliance is going to start coming down and so that people, all people, have equitable access to healthcare and can be put on a treatment table, get their pap smears once a year. Like those things are not happening today. Like people are being turned away from healthcare because they have a disability, because people are so uncomfortable, have never had the education or the financial ability to care for them, and so it's interesting. So those are the major barriers kind of highlights there's obviously it's far more complex than that.
Speaker 2:I think the other components is that there's lots of biases in our healthcare systems, as well as gaslighting, and so you know the healthcare. Gaslighting is just one of those things that I feel a lot of folks with disabilities unfortunately have to experience, which results in a lot of trauma, because when they say that, oh, it's all in your head, like, oh, you don't know what you're like, you know, like we're the provider, it's like no, no, no, no. There's this thing now called you know, patient advocacy and there's this thing called that what I feel is real and it's not okay for you to determine otherwise. And so I think that there's that ongoing piece as well as the biases that providers, depending on their age or where their cultural background, some can look at disability in a very disparaging way.
Speaker 2:There was an article of a research where there were all these physicians in the room and they asked them to raise their hand if they believed that their patients with disabilities could be healthy. And no one raised their hand because their association that disability and health, good health or disability and wellness could coexist wasn't even a reality to them. Wow, that's crazy to me. So if we're being served by providers that don't even believe that we can be healthy people, what kind of direction and care are they going to give us? Not very good right, like they might just think that they're trying to put band-aids on things just to keep us alive for as long as we can, but in reality it's like no, we can live for a really long time because we're healthy, productive people in our society. So it's interesting.
Speaker 1:Well, and it's interesting to put it that way because you know, I look at the endo community at large and I would say there's this misconception that if you have endometriosis that you will never be fully healthy, or the opposite of that is have a hysterectomy, you'll be completely healthy and it'll cure it. So we are in this like weird gray area of misunderstanding constantly and of course, a lot of us in the endometriosis community understand that it starts with defining endometriosis correctly like hurdle one. But I think that it's true. I think that is a large part of getting quality care is not walking in with a provider that already has preconceived notions of what your health should be.
Speaker 2:Yeah, yeah, absolutely Like a preconceived notion about whether they think that you can be a healthy human with a disability. And there's an article, it's a great article. It's called I'm not the doctor for you and, granted, yeah, it's highlighting and looking at people with physical disabilities, but it is translatable. You can translate that level of example to any any, any other disability, to show that we're sitting in a pretty significant issue in the healthcare world when it comes to some pretty strong levels of discrimination that, unfortunately, is not just solely on the provider. It is a part of the system too. It's a system that has been created to not discriminate, but yet there are some strong levels of inability to have our providers be in compliance and support them with what they need in order to be compliant.
Speaker 1:Yeah, absolutely. Something that you had mentioned to me prior that I found fascinating and really I hadn't put a ton of thought into because I haven't been in this place, is those who have a physical disability or limitation. Getting diagnosed with endometriosis is a very challenging thing because some providers cannot see beyond the physical limitation or the physical disability. Can you kind of just touch on that for us, because I'm not sure that we talk a lot about this?
Speaker 2:Yeah. So if you think about, you know, multiple disabilities, I mean we have folks that, like example, we have an individual with a spinal cord injury and also lives with lupus, right? So he has to be really mindful that when he is in conversation with his providers that they understand that there is a constant need to remember whether what's coming up is a result of lupus or the spinal cord injury. So I can almost guarantee yeah, I absolutely can guarantee there are women with spinal cord injuries that also suffer for endometriosis. I can almost probably confidently say that 90%, maybe even 99% of them don't even know.
Speaker 2:Because what's happening right now is with the physicians that are serving folks with complex, because what's happening right now is with the physicians that are serving folks with complex, long-term physical disabilities they're always just constantly trying to address the secondary conditions, right? So let's say, urinary tract infections, pressure sores, bladder bowel dysfunction, spasticity, like heart, there's all of these things, right? That is a direct result of a spinal cord injury that they focus on, and so oftentimes our physicians never have us come in for annual routine exams, which is what every human needs, in addition to the awareness of your primary disability and the secondary conditions. Because Chanda still has a body. I want to know how's my cardio, what's my?
Speaker 2:I want to know my cholesterol. I want to know my cardio. I want to know, like I want to have my pap smears when they're normal. I want to know, like I want, the traditional preventative measures that you do with all of your patients that are not disabled. I want those same tests and measurements too, because that in itself, in addition, yeah, it might look different because it may be impacted by my spinal cord injury, but that's some valid information, right. So if I don't get proper annual exams, of course there's going to be a lot of things that are missed because they're only addressing and focusing on the secondary conditions, and that's a scary place to live because a lot of women with spinal cord injuries will come down with some level of cancer because they were never, ever getting pre-screened for anything.
Speaker 1:because of that very reason, which is interesting to me that you mentioned urinary and bowel and everything else, because I mean, a lot of endometriosis patients deal heavily with bowel dysfunction, urinary and dysfunction bladder issues. I mean, if we're looking at endometriosis and the involvement, that's really high for us, so the cross in those two would ultimately lead to them completely missing endometriosis if they have it and focusing on their primary as the symptom, as opposed to there's something else going on here. You know Exactly, yeah.
Speaker 2:Yeah, it's very interesting, right. It's like just think about if somebody with lupus also had endometriosis, right? Or, like you know, I'm not just talking about spinal cord injury. There's so many different comorbidities that when, when we can have providers aware of that, knowing that not one outweighs the other, I see healthcare as a team. When you have a provider like they're supposed to be your, your teammate, you know your teammate in your healthcare awareness and your goals. And again, we've been caught up in a system where, unfortunately, we get 15 minutes and that 15 minutes just doesn't allow for folks to have the ability to really have a teammate as a part of their care team which is their provider.
Speaker 1:Absolutely, and you know I talk about this a lot, about having a multidisciplinary team. That doesn't just mean from the surgical standpoint, that doesn't just mean from a specialist standpoint. This is sometimes your physical therapist or your pelvic floor physical therapist or your acupuncturist will see something that your main provider won't, because they're seeing and hearing you on a different level. They're able to step outside of that 15 minutes and hear you and say something's not adding up. Maybe we should consider this have you gotten your blood work for that? Have you? And that's where this comes full circle with the integrative therapies, because I feel like when you have the ability and the time to sit down with people outside of the scope of their specialty and talk about some of these challenges that we're facing, they're able to kind of pinpoint that something's not quite right or something's not aligning with your primary diagnosis. It can be something that is contributing to your primary pain but isn't necessarily your primary diagnosis or primary challenge.
Speaker 2:Oh no, absolutely. What I love about that is the integrative component, right, and I think, like you said, full circle brought us kind of back to why the Chanda Center, you know, wanted to make sure we had multiple disciplinary services underneath one roof. Right, we even had we used to have a primary care in there as well, but just between our behavioral health provider they can see certain things at some level. But what I love about our team is that they're always in support of each other, and we've also had to learn to have providers get out of their own way in the sense of like hey, have a respect for acupuncturists. Like, yes, you may have gone to a higher level of what you identify as medical school, but I mean, we have acupuncturists that have went through multiple years of Chinese medicine and herbs and all these things.
Speaker 2:And so we always talk about a linear model of care, meaning that there's no one provider in this center that is above another.
Speaker 2:Like you have to be in collaboration with each other, because, guess what, the person that gets impacted when you don't is the end user, and everybody has really, I wouldn't say, bought in, but they're only there because they believe in that, because we'll only allow people that believe that to be people serving at the center.
Speaker 2:You know that there's no ego. There's none of that Because, at the end of the day, your ego as a provider will absolutely affect an individual human that does not need that, and that's why you chose to be a provider is to serve them, and they have the right to have multiple providers. World would be quite beautiful because there should not only be one tiny center in Lakewood, colorado, that is doing it, and I know that there's other clinics that do integrative therapies, but they oftentimes will not include mainstream physician. They'll only do like maybe a DO or a doctor of osteo, those things like that. And so I think that the more that we can emerge those two quote unquote separate worlds into one, the more success that all providers, but even the end user, will have.
Speaker 1:Absolutely. I 100% agree with that, because we see this in the endometriosis community a lot and it's a challenge that we are faced with often and that we are the ones putting our team together, which is good, but also we have to get our team to talk to one another for our betterment of ourselves, but also for the future generations. Again, it goes back to that If we can as a community and as providers, if we can encourage them to work together and as providers, if we can encourage them to work together, I think the outcome for all patients will be significantly better. And I don't see that a lot, to be honest, like I really struggle seeing people working together and collaborating, partially because of ego or they don't understand it, or whatever. But it is a challenge to find a team that will work hand in hand together for the betterment of their patients and there are those out there that do but it is, it's challenging. I think that is a barrier for those of us with endometriosis for sure.
Speaker 2:Yeah, and for everyone, because it wouldn't it be nice if that was just the standard way that we did healthcare in America. Is that it's it's a collaborative team, regardless of whether you have a disability or not, like that's just the standard, because so much healthcare and prevention and, you know, benefit could come from that for sure.
Speaker 1:Yeah, For those listeners that aren't from Colorado or even from the United States, what are some tools or some ways that they can help find integrative therapies that will accommodate their needs?
Speaker 2:Yeah, I mean, I always tell our folks that whenever thinking about the services, right, just being aware that all different services are going to produce a different outcome, right, so that's always beautiful, which is why we have different ones, and so trying multiple of them to really identify which ones are going to be most effective for you. But even if you're reaching out to those providers, it's always nice to maybe even do some research on whether there's a sliding scale fee clinic in your community, right, because we all know that finances is a big thing, and especially if it's not currently covered. So I always look for sliding scale. I always look for calling them and ensuring like, hey, have you ever worked with somebody with this level? If not, can you refer me to somebody else? And, I think, ensuring that before you even go there, if there's any level of accommodation that you need, make sure that they're going to be comfortable with those accommodations.
Speaker 2:Because the last thing, which I always feel is one thing that people with disabilities run into all the time, is that we show up because we're, so you know whether we're having a good day or bad day, we're. Maybe we're just going to be optimistic that when we show up, healthcare providers are going to open up their arms to us because one it's called healthcare and we're going. We're going there for the sake of our health care, but yet we feel so alienated or pushed away or unseen, and when that happens in health care, people run. And when people run then that means that their health care is not met, because it's like who wants to keep showing up when they are not seen and heard and are not being treated in a way that everyone should be treated?
Speaker 2:And so I think oftentimes diagnoses or lack of, or, once you like, people people could just stop doing health care and live a life of suffering, but then, let alone just not ever get the support, or things become more complex, because we see every day that participants will use the emergency room as their primary care, or you know, when they would go into a different massage clinic, they were just like, yeah, when they looked at me, they're like, uh, I've never massaged anyone in a wheelchair before. Like that feeling alone is just so. It can be so intimidating for some people. And so those are my suggestions when reaching out and trying to find those providers. And again, you, making it normal will bring them to a place of seeing the normalcy of it, because it is normal, for goodness sakes. We're just humans that have all these various conditions and that's just the way that it is.
Speaker 1:Right, what is next for the center? Because you guys have a lot going on and it is amazing. If you have not heard of your center, can you give us first of all, the website for people to check it out, because I think we can either learn from it or gain experience through that, and then also what's next for you in your nonprofit.
Speaker 2:Yeah, so the our website is candacenterorg and, yeah, I hope that everyone gains insight from how they might be able to. You know, depending on what level of ambition you're currently at, like you can, there's so many ways to replicate what it is that we've done for any, any disability right, and so I think that that's really essential in that everyone absolutely can have the capacity or education to do it, because I didn't go to school to learn how to open up a health clinic, like what's your background? I just got communicate. I mean, granted, I got my master's in nonprofit management after a while, but at the first, when I first started it, it was just like it's because I really believe in it. And so, yeah, that's the website.
Speaker 2:And then, in terms of what's next for us, is that we're going into our strategic planning, which I think that one of the things is that strategic planning, I think with all of us, is that it can be really good or it can be really bad.
Speaker 2:And so I've always said, when we go into our strategic planning, is that we're not doing it for the sake of doing it. We're doing it to really identify what we want to see in our future. And I think that some of the things that have come up for us is that we are really looking at doing an adaptive gym again, where it will be not coming out of the pocket of the individual, because our philosophy at the center is that we provide services to individuals where they do not pay out of pocket, but rather the health care system is paying on their behalf, because when they keep them healthy, they save costs, and so that's that advocate component. So we're going to continue to advocate. We're going to continue to evolve the lines of service that we already do, as well as evolve and really work on that project of ensuring that our mainstream healthcare system is giving disability equitable healthcare.
Speaker 1:So important, so important, I know right. Oh, you're like music to my ears right now. You're so great. I love that you had that passion and that heart to do that and you didn't allow your challenges to get in the way of not only supporting you but so many others Like that is, to me, the makings of a superhero. I'm just blown away by everything that you've been able to accomplish in that it's. It's just amazing. That's all. I mean, not all, but you're just amazing and I really want.
Speaker 2:I really appreciate that and, like you and I were talking about earlier, like the things that you and I do and a lot of people do, we don't do it alone like we have so many, so so many people backing us up because I came up with an idea but I wasn't the only one that was able to fund it. There's so many, so so many people backing us up because I came up with an idea but I wasn't the only one that was able to fund it. There's so many components of it that I didn't have the expertise to do. And so I truly believe that when we create something based off of a need that is not being met and you continue to see it evolve, you continue to see it impact more and more people like you're going down the right path and you got the right people supporting you, and I just really appreciate everyone that one helps us get where we are, but then also even you and other people that are evolving other things out in community that just really need the attention.
Speaker 1:Yeah, it does, and that's, you know, like, the nonprofit I'm part of called Indo Village is very much that same mindset of it. Takes a village, it truly, truly does on all advocacy fronts. Chanda, last thing before we wrap up, but I want to know what has been the most profound thing that you have learned in your journey in doing this?
Speaker 2:Ooh, that's a serious question.
Speaker 2:I oh goodness this is usually I can like come up with it right away.
Speaker 2:I would say that, being a bit naive in your processes of creation and passion, that part, I think, is what's always been deep for me, because I often think that there's sometimes we don't move on things because we don't think that we're smart enough or we don't think that we have what it takes. And what I loved is that I wasn't scared of asking questions and I wasn't scared of just being. You know what I'm naive, and being naive results in this, and I'm okay with that, because actually being naive brought forth a lot of amazing things, meaning like when I didn't have fear around, like well, I don't know how to pass legislation, because I was so naive, I wasn't scared of it, and so, therefore, it just happens. I think that, for me, is really the profound components of this stuff. Granted, there's so I mean there's so many, and the fact that I have to choose one is really unfair, but that's the one that I'll say as it relates to just myself and something that I can share with others.
Speaker 1:Oh, that's so good. I would say the same. I mean, I think I've learned so much about not only myself, but also the disease and the challenges that we face, but also the really amazing parts of having this disease is this community, and I was completely naive to that, and I have, again, not stopped at asking questions. That's why I started. This is because I'm not the expert, but I know the ones that are and I'll ask the questions because I'm just curious most of the time, and so that is so profound, I think, for all of us to live by. It's just that being naive is not a bad thing. It just continue asking the questions, it's so good.
Speaker 2:Oh yeah, ask all the questions you want. Like. That's the, that is the motto, like it in life. Everyone, everyone, like just asked a lot of questions and there's nothing wrong with it.
Speaker 1:Yes, that's so good, chanda. Thank you so much for your time and your insights and your passion and your heart. I'm excited to continue this relationship more and build and grow with each other in the advocacy and disability front for endometriosis as well as integrative solutions. So thank you so much for taking the time with me.
Speaker 2:I just appreciate that, yeah no, thank you so much for having me and yes, let's stay in touch.
Speaker 1:Yes, Thank you so much and until next time, everyone continue advocating for you and for those that you love.