Kristal Kent, Disabled Army Veteran & Fibromyalgia Warrior, The Social Good Magazine Show - Video - The Social Good Magazine Show

Episode Transcript
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Kristen Thomasino (00:00):
The social good magazine show is produced by Thomasino Media LLC and hosted by Kristin Thomasino. The social good magazine show is a beacon of hope for global communities filled with inspiring stories that illuminate pathways to success. By sharing transformational concepts and taking action oriented steps towards progress, we can collaborate on reducing suffering together and enjoying the journey along the way. So let's use this magazine and show is our roadmap and opportunity to guide each other in discovering victory over adversity. The Army veteran, you are used to structure you're used to wanting to get up and join a cause. You have a history of this before you got injured, and chronically ill. And so there's a uniqueness about who you are. And and so that's why I think it's fun for you and I to talk today. And to do this session. You're in the magazine and the magazine, I'm super excited, because we're just really getting it out there and launching it now and sharing these stories. And, you know, I think that there's a lot of different, you know, folks out there that are going to be really interested in learning about your unique story. I find it fascinating when I meet folks that have served in the military. I feel like you're a different breed of people. There's something about you all, that's different. And so Krystal, tell me, you know, just a little bit about you know, your bio, and kind of who you are. Where are you from right now? Where are you tell me.

Kristal Kent (01:45):
So I hail out of Cleveland, Ohio, I grew up in a suburb called Berea and graduated high school and also went to Baldwin Wallace University and Berea, Ohio, kind of when a lot of people don't know, which, you know, leads to my unique experiences is that I essentially grew up in health care systems, because when I was eight years old, my brother at the time who was five years old, was diagnosed with leukemia, so I spent a lot of time as a child and teenager in major health care systems and just observing how these systems work and and if they're really truly meeting the patient's where they're at. So I grew up as a sibling. And then as I got a bit older, a caregiver, and then eventually an advocate for my brother, like taking him to appointments or when he was in the hospital speaking with this providers. And then when I started to do some adulting, I actually started working in the field of the intellectual disabilities field working with children and adults with intellectual disabilities, and now neurodiverse of conditions. And I did that for about 10 years, a variety of roles. Then I jumped over to the mental health side for about 20 years, and I provided mental health care and a variety of roles, and nonprofit and healthcare systems. And in the midst of all that I was in the army, and I was with a combat support hospital unit. So I learned a lot there in and different aspects of running. Essentially, it's like a military health care system in a combat zone. And that was very helpful. And then I became a patients when my fibromyalgia and the injuries I sustained while in the army progressed. And so I kind of want from this. This road, I traveled from sibling, caregiver, professional advocate, and then a patient personal advocate. And then on top of that, I've done a lot of volunteerism since I was like 15 years old for a variety of different causes, from animal rights to autism to leukemia, the American Heart Association. So yeah, and

(04:15):
then on top of that, when it comes to healthcare, I walk to the front lines, and one of it is I get some health care through the private care sector of the health care system. But as a veteran, I alsogo to the VA as well. So I guess all those combined factors of my life would make it a unique and very rare experience within the advocacy and healthcare systems.

Yes, I think so. I think that I think that your history and your and your experiences definitely cover a very unique perspective that most people don't get to see. And I think your story again, it's just one It's important for people to know, it's important for people to know because Kristal Kent has information about experiences that sometimes people go through in our communities, not everybody, but some people. And because of that, you know, we need folks out there that are willing to share their stories are willing to say, Hey, these are the things that went wrong. These are the things that went right. And if I could coach you on anything, these are my top learnings. And, you know, I think that number one, you know, I just want to applaud you for continuing to give and give and give and give and wanting to be in a life of service. And, you know, lots of people aren't like you, they aren't,

I'm told that my mom gives me a nickname called Crusader Kristal. And I'm always putting in for the underdog. And some people call me small but mighty, and I don't know, I just feel that if we all gave 1% of kindness in the world, the world would be a better place and using that kindness to help those who are marginalized, regardless of if it's, you know, due to economic factors that they're, you know, marginalized, or they have like an intellectual disability or physical, you know, invisible illness, that if we all gave 1%, that I think that we could really make some really proactive positive changes to the world.

I love that. I think that that's the kind of optimism that we need. And, you know, you've been faced with challenges that not most people have faced, you know, since your childhood. And that takes a lot of emotional fortitude, and a lot of strength. And a lot of also, I'm sure, different toolkits, you know, that you've learned about over the years, so that you could be where you are today. And I look across the screen right now. And, you know, I see somebody who has just experienced some unique challenges again, and still standing here and wanting to share, and coach and also help improve. And I love that you want to do that, because this healthcare system is healthcare game, the wellness world, right? It is complicated, it is hard, lots of people are trying to do their best. Sometimes we have some folks that may not. And that's just like any organization, right? We kind of experience sometimes that. But what we can, I think do is learn and listen right? To the Intel that's on the ground, it's coming in right from the field and share this because I think that there's a value for this information. And I know that our health care system. And that group, you know, in the hospitals and others have been very stressed out. And lots of things over the last few years, there's been so many different challenges. So I think if we think about the future, right? How can we, you know, help, right? Our health care teams be better. Kristal, you know, what do you think?

I? Well, first, I liked that you said wellness worlds and where we're at today, I kind of coined it like a wellness war. Because, you know, the healthcare system is not set up anymore as a human service sector of support and wellness. It's being run like a business model. And what happens is when you put profits of the people, then you start failing in other areas, and then patients fall through the cracks. And the other thing as you noted, we really started to see even though it was predicted back in the 90s the shortages of medical providers, especially nurses, and they didn't know anything about the pandemic back then but they're able to pinpoint that like due to aging population and population growth that we're gonna have a shortage and the system is set up where we have these health care providers, most of them are actually good. Um, you know, we hear stories all the time about bad experiences, including my own recently with a lot of patient rights violations which are federally protected. In the United States, but in the same token, there's like this symbiotic relationship, we have medical providers that want to help people, they don't have time, nor the channelled access to learn about the billions of medical conditions. So then our role in this wellness war as patients is that we have to be the most well informed patient, we possibly can be with our medical conditions. But in the same token, we need medical providers to be active listeners, and we need to partner together to address the systemic issues and healthcare, which puts up barriers for promoting overall wellness and treating conditions. And it feels like it's like two groups of people against each other like patients and providers. But I think that we need to come together and say, you know, what, the system is messed up. And we need to come together as a voice on both sides of the spectrum, and advocate for these changes so that we can promote overall

(11:02):
wellness, along with this testability and affordability. So at the end of the day, we need to partner together.

I love that and go to that point, right? You said a lot there. And I and what I think is really important here, you know, in this discussion is this communication between the patient and the healthcare organization and the team, right, it's there. And, you know, you've mentioned some very important things right there about the patient bill of rights, and other things that are very important to, especially chronically ill people, right, that are trying to figure out, you know, do I need to be at the hospital? Do I not? Is it gonna be worse this time? You know, so you're already building a lot of, you know, different pain and, you know, stress and other things that also impacts, you know, the ability to articulate, you know, sometimes conditions impact the ability to articulate, right. I've been there, you know, where I've had my speech impacted at times, and other things from my own personal case. So, you know, it's important that we have a dialogue, right, in a way to dialogue between the patient and the healthcare provider. Now, in the emergency setting, right, there's a lot of things that are happening very quickly, or sometimes very slowly. And that's what I think is the question, you know, of efficiency, right? How do we how do we fix some of these things that are taking a long time and MCAT, you know, patients speed to health, and speed to health or speed to care, whatever the right words are. But it's this perception that when we go to an ER often, right? The, it's a big, it's a big dude, big to do at most places, and it takes a long time, you know, and with , these waiting rooms and other places had become even more filled. Right. So any thoughts there Kristal on, you know, when you think about the emergency care, and you know, that process of being either admitted or not admitted, right into the hospital? What types of things do you think could be improved there?

I'm going if you don't mind, I'm going to kind of pull in a recent experience for your listeners and viewers. So I recently had a heart attack at 47 years old and going into emergency room, along with no, I'm kind of piggybacking some of the experiences. While being with a combat support hospital is one of the things I'm seeing in emergency health systems is triaging is not where it should be. So to give an example, from my personal experience, because I believe that our story, catalyst for positive change is I went to the emergency room knowing I was having some type of cardiac issue. At the moment, I didn't know I was having a heart attack. And a simple, big issue was when I was getting my blood pressure taken. The personal care assistant, I asked that person I said, so is the ER full? And she said yes. And then she said, if you would have been feeling silly when it took you right? And I said, Well, the problem is, I'm having some type of heart related event, and all literature versus recommendations and even on your website in the room as fast as you can. The problem is, when you're setting up system to where let's say, I'm not seeing this happen It's all the time that this is just one significant point I'll be at small at times, is that someone can come in by ambulance and they break their leg. And if it's not a compound fracture, if it's not broken through the skin, if it's hasn't torn through like arteries and blood vessels, it's typically not life threatening. It's a medical emergency, but not necessarily one that's life threatening, you know, they could go in shock, and it can become life threatening none. But if you have someone such as myself, that's coming in with a cardiac event. And someone with a broken leg, who is, you know, stable, it's not life threatening, and you triage that person with a broken leg first, because it came in an ambulance that was just inequity and major issue because then your your patients that

(15:49):
are coming in the ER that have life threatening situations, they're not getting the care, because people that came in an ambulance are triaged above people that come in by personal vehicle or familymember. And that's what I had to do, because I did call 911. And they told me, it would probably be X amount of time to bring an ambulance out to where I live, and get me to that, you know, emergency room. And so I had my stepfather bring me in, because it was less time. Yeah, they get there as soon as possible. Now, I see that this happens all the time where someone comes in and emerge, you know, ambulance, and they have a medical emergency that isn't life threatening. But if that's happening 5% of the time, and you look at over 300 million people in the US, that's a heck of a lot of people that are having a life threatening medical emergency that are kind of being backlogged because someone came in an ambulance. And that's not an appropriate way all the time to triage someone. So there's that. And then when you have years that are full, and they say we're full at that point, strategically, they should be reaching out to other ers and saying, Do you have any beds that we can send someone who's medically stable that we emergency care so that we can bring in these people that have life threatening situations potentially going on? We're not seeing that enough, either. However, on the flip side, we have we have medical provider shortages, right, and all healthcare systems. So what are things that we can control, and that's one of them is making sure we're hiring and contracting people to work in our medical facilities and ers appropriate. And the other thing is patient, this is our part of responsibility and accountability, we have to be able to actively and proactively advocate for our needs and not, you know, unfortunately, we are so unwell that it's so easy not to speak up. But in those times, like in my situation where I was having a cardiac event,

(18:01):
myself, and then I would send my stepfather and advocate, like we have to find a way to advocate so that we're communicating in a way where they understand that this is not just a pain issue, or Ifeel fatigued or lightheaded. This is what I'm experiencing. And then we try to articulate it as best we can. And it's hard in an emergency situation. But one way we can do that is being fully educated on all of our medical conditions and understand intersectionality and compounding of coexisting medical conditions. So that will help us in the event of an emergency. We already have that information memorized so that we can at least relay that and hopefully improve our chances of getting our care either expedited or having timely access to emergency or health and wellness care.

Wow. So Kristal, this is like really a unique perspective again, right? And this is what this is about is sharing a day in the life and how do we you know, look at how other people are experiencing life. And there's a protocol, right that has been established because there's been so many cases and incidents over the years that people put together it sounds like a patient bill of rights. And there's also best practices especially you know, that you're aware of because of your history is in the medical field. You know about how you triage and how you look at prioritization of patients. And you know, it sounds It's like, in some instances, there could be some operational failures happening where perhaps the prioritization didn't happen or could be, don't be done better, right. And maybe there could be even in some institutions in an educational, you know, training or teaching, right, that could be a value. And I think that that's the thing, right? You know, like, to your point you you acknowledges, you know, as well, like, you know, that with COVID, and, you know, those experiences they have, you know, there's been a lot of overflow in these emergency rooms. And so that's also, and this is important to really, for us to talk about, especially as advocates, that have other chronic diseases or injuries or things that require, you know, access to emergency services, like a heart attack, like what you went through. And when I think about, you know, the others as well that in our country have experienced these types of events, especially over the last few years, how challenging and even more stressful, you know, that must have been to think about some of this stuff, right, to experience this while you're in the emergency

(21:17):
room. So, you know, when I think about, you know, how could we be better to, you know, there's this question of, you know, we have shared best practices and other things. And so we haverheumatologists that focus on immune health, right, and all the autoimmune diseases and how to look at fibromyalgia and other types of conditions in conjunction with neurologists, right, these are some specialists, now you got a cardiac events, right? Now, this is kind of unique, because, you know, I am a fibromyalgia patient as well, right. And I've read a lot of the literature, and you do see a few cases here and there, right, that are publicized, that these things are happening to other fibromyalgia patients. Now, what do you kind of think about for you, from your perspective, you know, what could you share about your case, you know, as a fibromyalgia patient for which it's happened with this.

So the one thing that's hard living with an invisible illness is that we often present looking well enough, or, at times, medical providers will say, or deduce that our issues are from our diagnosed condition, whether it's like fibromyalgia or lupus, or rheumatoid arthritis. And so they stop investigating because they just think oh, and my case in this is kind of what's interesting with a heart attack is they say, in women, that there's different symptoms that are exhibited or patient experiences in women having a heart attack compared to men, and that is chronic fatigue, or fatigue and weakness, maybe some vertigo, and the problem is with fibromyalgia, we have this pain, right? And like a heart attack, you have pain, and then we live with chronic fatigue and weakness every day. So how do you differentiate those symptoms from a heart attack and it's really hard, and that's kind of where you're coming in and going, Okay, I know enough with my medical condition because I've educated myself that this is not fibromyalgia or this is not an autoimmune issue with my connective tissue disorder, this is different. But how do you express that to medical providers when you have a medical condition where it's some of the prominent symptoms are the same as you know, in my case, a woman having a heart attack and that's when I was like, here's the thing, I have fibromyalgia and these other conditions, but I don't typically get nauseous to the point where I get vomiting. I might feel discombobulated but I don't feel like I'm about to pass out. And this pain with fibromyalgia and other chronic pain conditions a pain me all over the body, but mine was centralized right here and going down my left arm, and and it hurt just here. Right? And when you read literature about heart attacks, that area is usually larger like in men, you might have some central pain, but I had pain here like the shape of my hand and then my arm went numb. Well down into my

(25:00):
hands. And it was intermittent like, I would feel like it would be painful, but then it would go numb. And I was like, this is not Fibromyalgia this is not this condition, this is abnormal for me. Andthat's the biggest thing as patients, and that we need medical writers to listen to actively is that we know our own bodies. And if we say something's off, we know that it's not related to what we're already diagnosed with.

So let me ask a quick question on that one. Sorry. You said something really important, right? About like the heart, you know, and how you felt right? You notice a change in the symptoms, right? They there was something different this time in the combination is what I was hearing, also of symptoms that you were feeling. And, you know, the other thing that I'd be curious about because you are very medically forward, you know, you pay attention a lot of stuff. Do you have any? I mean, did you? Was there anything like you were like reading at home? Like, did you have like a heart rate monitor on or anything like that? Or like what?

Like, it's one of those things? Like I knew something that right now, initially, did I think I'm having a heart issue? No, because it started out really mild. And I just didn't feel quite right. Like I kind of felt, I don't know, kind of like disconnected in the sense of I was having these symptoms, they were starting out mild, but they're kind of making me for lack of a better term heavy, like, the way you might feel if you take like NyQuil nighttime medicine, where you're like, Whoa, so like out of it before you pass out from it. So that's kind of like how I was feeling. And it wasn't like vertigo. And that's why I said, it's so important to know what your typical symptoms are with whatever, you know, medical conditions you have, so that you can pinpoint. This is just not quite right. I don't know what it is. And sometimes as a professional will question or say, Is this a new symptom of fibromyalgia? Or is this a new symptom of this condition? I have? And we didn't go through that process. And then we kind of do this mental checklist of No, no, no, not sure. Definitely not. And once we do that mental checklist is kind of like when we know, okay, something's going on. And I should go and get medical care. And then how do you are taking like that, and again, it's so convoluted because there's so many overlapping symptoms, like between a heart attack, and some of them with five miles.

So let me let me ask you a question when this happened for you, right? How did you articulate you know, when you got to the hospital, you know, or how did you get to the hospital?

So I called my parents and my stepfather told me because for the time for him to come and get me and take me, there was an ambulance coming out and taking me there was going to be shorter timeframe. And when I got there, I said,

but what did you say? I'm sorry, but what did you say to your stepfather?

When I caught Well, I initially called and spoke with my mom. And I said, Something's wrong. I don't feel well, and I'm having a weird pain. That's all I said to my mom. Just to kind of go back a little bit. I spoke about my brother when he was diagnosed with leukemia when he was five. And then when he was 17, he was diagnosed with cardiomyopathy and needed a heart transplant. So I did stay calm in that moment, because since I didn't know exactly what was going on, I didn't want to raise alarm bells. Because my history with my health I've had so many, like anomalies or things that just didn't make sense. Like, my gallbladder started failing for no reason in 2010. And they took it out and then I knew right away that it wasn't functioning right. Because even in or recovery, I was like, I feel a heck of a lot better, even though they just went in and did surgery. You know, it took I did say to my mom, like, I think I'm having a cardiac issue. I just I don't feel well. I kinda like disconnected I feel sick, and I have just pain that isn't typical. And so she's like, Okay, I'm gonna send your stepfather to get you until it was like I need to go. So and I don't believe in setting off alarms until you have all the information and know what's going on.

That's good. So you're trying to keep a keep calm approach to keep your stress levels down. This is important I wanted to I wanted to cover this Because Krystal is a soldier. So like she's, you know, she's she's trained differently than other people, but she's also her own advocate. And she knows how to, you know, articulate at times when she needs to be taken to a hospital, which is very important for others to listen to right, as you know, what was that like? And what do I say? So you just kind of help somebody. So thank you, Chris. So that's important. And so then you got to the ER, right? And, again, you know, here's this question of articulation. Were you able to articulate when you got there?

I was, I mean, I'm not gonna say I was in a great state, because like, I was in a wheelchair, I literally was like, not able to move, but I had said, Okay, here's what I'm experiencing. And here are some risk factors of medical conditions that I have. And one of them I cited was Reynaud syndrome. I am also, I have what they call prolonged QT syndrome. It's a congenital heart condition, like you're born with it. And I said, I do have an autoimmune condition that kind of waxes and wanes, like it flares up and goes in remission, and I have fibromyalgia but I know this is not fibromyalgia. And, and so I was able to articulate that. And I said, I don't feel well, and I do everything that I can not to go to the emergency room. And like I'm telling, you know, the person at the front desk, who's taking my information, having me sign off on, you know, consent to treat documents, I said, Something is wrong. And I can't even pinpoint what it is at the moment. But I feel like it's my heart. And here's the reason why I'm having these symptoms. And I just, you know, how these risk factors, and I seriously can't even stand up. And I said, I have a high pain tolerance, and I will push through, I can't stand up, I'm gonna pass out or one of the two.

So you're able to, you know, get to the hospital, you know, yet click identify that something was happening early to which is really important, right? You know, you're listening to your body, you're being your own scientist, your own doctor, right, you're listening. And this is important, because we have to listen to our bodies every day, it talks to us. It tells us different things, sometimes it screams at us, when it's in pain, and your body had something that was happening that was making this heart attack event happen. And what I what I I don't love that this happened to you, this is horrible What happened to you. But I do am thankful that you were able to get to care quickly, at least from your parents taking you what happened, like, you know, like, is there anything else that you'd like to share, you know, about, you know, your time there, you know, with your experience.

Um, the unfortunate thing is I had a major delay and medical treatment. And this is kind of where you really have to advocate for yourself and if need to be, you know, a bulldog advocate. And just literally not taking no for an answer and being consistent. And it's hard when you don't feel well. And like I said, I would send my stepfather up and say, I need you to tell them this. And I would tell him what to say. And I would say I need you to tell them this because like, I wasn't even well enough at a certain point where pushing me up there in the wheelchair would have just made me even more dizzy. So, you know, one of the things that happened, and part of it was there was a lot of systemic barriers, like we talked about triaging and er being full. And, you know, was it possible, I don't know these things, I'm just hypothesizing. But there could have been variables that couldn't move people in that were having life threatening situations such as myself to, you know, back into the ER department. So you know, the biggest thing was, again, it goes back to being a knowledgeable patient and then articulating, but also, in my circumstances, there were several factors or variables that occurred that impeded or violated my patient rights and every step of the way. I was calling it out. Even not necessarily, I wasn't ranting and raving. But, you know, going back to when the personal care assistant had told me if I would have been brought in by an ambulance, they would have took you back right away. And I pointed out I said, Oh, well that's a systemic issue. In a barrier to healthcare because you're just assuming that everyone that comes in an ambulance has a life threatening medical, you know, anomaly happening or event, you take them back right away and then they stay back there when you have patients in your ER waiting room who are actually having a medical emergency that is or can be life threatening. Every step of the way, when there's

(35:26):
these little nuances of patient rights violations, I vocalized it and being hospitalized, and even with inpatient medical care providers, I calculate my experience in the EMR, I incurred several keyrights violations, including delayed access to care, it was two hours and 30 minutes before I received any treatment intervention, like medication, they would typically prescribe in cardiac events. being seen by a doctor, there was a doctor and shift or Bankwest, who never came out to eyeball me or talk to me. And these things are rights violations. The patient has a right now what tests are being ordered and why there is a patient rights violation where I was basically denied access to timely care for a life threatening medical condition. I want to highlight you know, an emergency room we'd have to look at is this life threatening, or simply just a medical emergency where they need to cast on their arm every step of the way, I was vocalizing up until when they finally called the curly cardiologist down and one of the things that was interesting with the cardiologists was he was great. And when I told him everything that happened, and I identified some of my coexisting medical conditions like arenales and prolonged QT syndrome and what I was feeling, and he even said, I think this might be your Renaults, which causes spasm and constriction of your blood vessels and arteries. And he goes, it's very possible your Renaults cause this spasm of an artery in your heart and we need to go in ASAP to do like a cardiac because, you know, catheter procedure to see what's going on. If there's any heart disease, blocked arteries, and he started going on. And I said, Look, just tell me worst case, you know, scenario, I'll prepare for the worst, but hope for the best. And he was like, okay, he's like worst case scenario, you can end up with open heart surgery, if we find that you have any blockages that we can't fix with this catheter procedure. And I said, Okay, good.

(37:41):
Now that I know, I can prepare. However, he said that, because I was so knowledgeable about my medical conditions that actually helped hone in and, and pinpoint better what was causing this cardiacevents. So

that's pretty awesome. Because like, once you got to the specialist, right, things move for you. And it's kind of like you had a good dialogue as well with, you know, the resource. And this is important, because that's part of the win. Now, there's some challenges on the other side of it, right, with the operational connection, right to resources. And I think that this is an important lesson, right, just in general for the American public, right? What we experienced in these ers and what the operational staffs and others are experiencing these high volumes, you know, if you're really not like, you know, an emergency room patient, you know, that needs to be in there potentially, this is the importance of having these clinics, right, that are also access points, so that people can go in and get some care, right, if they break like their wrist or something like that, right. But when we have like these major events, right, and also, ideally, you know, even the common cold and the viruses of before that used to be treated in the clinical setting more often than not, right. We saw like some of that change, right with the virus and what happened. So what I think is important here in this discussion is that patient care and speed to care is super important, along with this prioritization. And the following of the prioritization of patients with unique needs, especially critical care needs, like with what happened with you. And, you know, one of the biggest things with a lot of these conditions is you know, time and you know, how quickly you can get there and help somebody and that makes a difference. And then when you've got, you know, someone like you Kristal that has a more complex history has a more complex face is the responsibility of the patient to quickly be able to articulate that or to present some kind of a card or information right easily to the providers so that they can take this information. Right. And go. Yeah, I think that

(40:18):
that's this thing that we've kind of been alluding to in our discussion, is this communication, right? And how do we improve communication in these different layers? And then how do we also respectpolicy? All right, and best practices. And then also this addressing of the, of the shortage of staff. And we do have a problem nationwide now worldwide because of what's happened, right. With ers and hospitals being staffed properly. That's not just, you know, just our regular hospitals in areas, right, in some instances, but particularly when we look at a subset, which is where you kind of also fall into the category of, you know, with the VA hospital, right for other services. There's challenges there, right, getting access at times because of shortage of staff, shortage, staffing shortages, is that right? Yeah,

you're correct. And you know what, a lot of this comes down to systemic issues that might not be easily, you know, addressed overnight. But there are some variables we can bring into play to help alleviate the stress of the shortage of medical providers on the VA Health Care System. One of the things they don't have is they don't have urgent care clinics or express clinics. Now, there is some legislative law where we as veterans can go to a designated urgent care or express clinic that is like basically contracted the pm for us to get care and the DA won't pay for it. But that only came to fruition over the last couple of years. Now, summon, I mean,

that's, that's a win. Let's celebrate that, because that is more access. Right?

It is the way but then there's some other ideas that maybe we can explore with healthcare systems in, you know, I was thinking, I'm like, Wouldn't it be great if on, they have designated health care providers on each shift in the ER to take in telehealth, you know, appointments for people who are not sure if this is an emergency, or if it's someone who has the flu. So like, technically, an average person might not necessarily need to go to the ER, or even express care clinic for the flu. But someone such as myself, if I have the flu, because I have these medical conditions, that puts me at high risk of, you know, having a really bad case in the flu, developing pneumonia. These were also factors that healthcare systems and providers and advocates also spoke upon. With COVID. It's like, okay, if you have certain medical conditions or this type of medical history, you're at higher risk if you contract COVID that could put you into respiratory distress. So an idea to on maybe reduce some of the taxing on our ER systems is that they create emergency telehealth accessibility. So patients such as myself, or people who don't have chronic illnesses can call in and say, I'm having these issues, here's my temperature, here's my chronic illnesses, I'm on the fence, do I do er, express care clinic? And, you know, a lot of times these providers might err on the side of caution and say, we'll come to the ER, but if someone says, Hey, I have a flu, I feel like I had the flu, I did a COVID test and it tested negative and my temperatures 100.2, they might say, I think that you would be better off going to an urgent care setting, you know, and again, it can be very convoluted, because and confusing because a lot of times doctors don't want to say, oh, go to urgent care, they might want to say go to the ER to kind of cover their bases due to liability because of their, you know, insurance.

That's the challenge Kristal. So we've got a lot of people in our communities also that sometimes don't want to take responsibility, right, or dewpoint. Maybe that provider doesn't want to take a risk right with not understanding or being able to physically, you know, be able to examine, right and back to your point. We just need this rigor again. This this accountability in our operational rundowns of these words. Innovations right and to really run them again, with, you know, high quality, lots of, you know, access points more staff, right, which is part of this problem, and finding ways to deliver a better model for the patient. And so you know, there's so many amazing learnings here, just in this one episode, I could keep talking and talking with you. And we are going to keep talking and keep going on another episode as well. But what I wanted to do with this one, because this was just such great content, you know, we covered number one, you know, your history, thank you for sharing who you are. Thank you for being willing to publish and share your lessons and even just your desire, right over these years to continue to work in a field and in various fields that help other people. That's social good. That's why I chose you to be in the magazine, I thought, my gosh, look at this rock star. She is you know, getting, you know, proclamations from the governor of Ohio for fibromyalgia. She's a veteran, she's served in various unique medical, you know, groups that help people that, you know, sometimes would like to connect with others and find ways to be in their community. And sometimes they experience life differently. And that's what I think this is about is, you know, sharing experiences with people that experience life differently. And sometimes we also share experiences to a degree, right, like experiences. And that's where when we, you know, share information about what went right, what went wrong, right, in our

(46:45):
retrospective. It's important now, I used to be a scrum master. And I've been trained and you know, as an agile development. And so I love how you talked about process improvement, how to make itbetter, you are pinpointing roles, you are giving concrete examples from the patient perspective of how we could do it better. But also, from your professional expected perspective, I want to I don't want to take that away. Like, I know you're a patient. But I also know that you are a very skilled professional who's been working in this field for a long time, also, with how can we improve health care? So Krystal. As we look to 2023, I know you're a busy lady, and you're now you're recovering from your heart attack. So I want you to recover from your heart attack. I know you're a passionate Fibromyalgia advocate. And every year, there's advocacy work, that happens every day. But then there's some unique work that happens across the country in DC. And I was able to participate last year and that and wow, just being a participant, you know, I was in a bunch of states. And that was a lot of fun to represent and talk and sit in some discussions or lead some. Now Kristal is one of the people that organizes it, and leads it and it's been doing these things for a while. And so I wanted to also just give her some time here to just talk about, you know, what she sees for 2023. And what's important.

You know, so here's the thing about the fibromyalgia community is that this is the first time that we're seeing individual advocates and smaller nonprofits and grassroots on advocacy, doing cross collaboration and coming together. Like in a coalition of voices, to advocate on behalf of our community, and what's unique, and I want to point this out, because you don't see this in other communities, and they're being successful is, you know, a lot of times like lobbyists, healthcare attorneys, our senators and congressional representatives, they'll say nine times out of 10, they're more likely to listen to a bigger organization, because they have so many people involved and sort of come up with we can do this and come together as a community and just we're not going to call it an organization but across collaboration of voices who want and are asking for the same things that are not unrealistic. And one of those things is we need more funding for specific driven research for fibromyalgia and fibromyalgia historically has been one of the least funded medical conditions to receive research funds to go to the CDC and National Institutes of Health to do research and really up until like four years ago, we're the second least funded medical condition for funds for research and slowly over the past few years, we've seen that number go up. And that's because as a community, we said, You know what, we need to stop believing this fallacy that only big organizations can make change because we have so many voices that as a community, we're huge. We need to stop thinking organization and start thinking community and bringing us together collectively, a certain time of year and share stories, along with how having more funding for research would positively impact the lives of those living with fibromyalgia, but also paved the way for future development of treatments that are more targeted and specific to the underlining on issues with fibromyalgia and

(50:46):
better treat the symptoms. And so that is the power of small grassroots advocacy is that we can accomplish really great things if we come together and work cohesively in collaborative collaborative inunison. So over the past few years, we have seen an increase of the designated funding for research for fibromyalgia. At one point, it was 20 million, they cut it down to 14 million in like 2019, late 2018, going into 2019. And they were talking about reducing it even further to 12 million. And then kind of got there. I was like, oh, no, no, no, we're asking for 30 million, we're gonna get double. And then we saw the following year, the projected amount for funds for five miles or research projected to be 30 million. Then last year, I was like, we want 50 million. This year. 100 million is what I'm asking for. And it's not unreasonable. Some people have $100 million for research for fibromyalgia, which Fibromyalgia has been dated in medical literature, going back to the 1590s, it just felt or a different name, muscular rheumatism. And as research and info and technology evolved, the name changed and the classification changed. And there's some more understanding whatever it's called that there, there's all these research that are being duplicated with these limited funds for fibromyalgia at the CDC, and NIH. And I'm like, we don't need any more research studies on gut health or cognitive behavior therapy or physical therapy, we need research studies that are targeting what the cause is what the root causes. And that will help us develop better treatment options that are targeting not just the cause with the symptoms. So 100 million. And when you look at other medical conditions, we are not a condition. But there's a lot of rare diseases that are getting 100 or 200 million per year, and there might be only two to 5 million people in the US that have that condition. Now, I'm not saying take away funds from those conditions, I'm just saying give us an equal

(52:55):
playing field and equal access as is our legal rights. Well, that's

Kristal, I think is important here for the public to understand is they're not as educated on the condition as we are right? Because we've lived it. And, you know, what most people don't understand is that fibromyalgia can potentially cause over 200 plus symptoms. And there's various things that people have said and literature around that because what happens with with symptoms? Kristal, do you believe that that we have around that many symptoms at times? What do you think about that? That's a

pretty good number. Actually, that's not factual. And there is no documented printed medical literature research that this Fibromyalgia has 200 symptoms, we see that from advocates for people that put out content on social media and watch the blogs that say that but here's the thing, they're wrong, because what happens with fiber Miles is that it interferes with all of our internal bodily systems. And then we ended up developing other like secondary medical conditions because we have fiber miles are coexisting. So an example would be a lot of people with fibromyalgia develop irritable bowel syndrome, they develop Raynaud's syndrome, they might experience costume dryness, which is the inflammation of your cartilage in your written. So what happens is we have fibromyalgia is our main diagnosis and then because Fibromyalgia is a jerk in our bodies, they're like nananananana lipo we can do, we can torture you and now you have IBS. So now you want migraines, and now you have chronic fatigue. So what happens is, when you're not looking at fiber miles from a scholastic, academic or research type of approach, for the average person, like we have 200 plus symptoms, what really what it is, is we have a lot of symptoms, but they're specific to the medical conditions of fibromyalgia and then those secondary or coexisting medical conditions that we develop fiber miles are has a very specific set of symptoms, just like irritable bowel syndrome, just like costume conjoined is just like migraines. So,

so

we made it, but they're not all fiber miles are related. And all those other conditions are not symptoms. They're a medical condition in their own right, as well.

Fascinating. So when we look at kind of just the condition, you know, one of the things I think is important is there's different neurological symptoms that come from this. And last year, we lobbied right for the condition to be classified as a neurological, you know, condition sets. So, when you think about, you know, we just talked a little bit about, you know, the symptoms and different things, and you mentioned that there's overlap between other comorbid almost right conditions. And there's people that are experiencing these multitude of other conditions. And it sounds like, you know, like, just like, kind of us, you and I understand it, like fibromyalgia is this wrapper, right, almost, that it's kind of our own brella. Right, almost. And that's where I think is interesting, because it's like, what kind of looks like lots of different types of people from many different communities can be affected by this. Men, women, children, teens, adults, right? Elderly, there's people who've had injuries who report having it after, right, and why they're not healing, potentially. I was kind of like that right? With what happened. In my case. There's people that have had heavy trauma, right? mental trauma, or abuse, trauma based trauma, right? So PTSD, right, you read about that also. So there's this this multitude of, you know, symptoms, conditions, and then complexity at times. And this, I think, is why this is so important for us to have as a case for the American public to consider and for our government to consider with funding from these institutions. Because if we're going to spend, you know, money, to your point not to take away from other conditions, but to learn more as a people about how we can reduce suffering, right? This seems to be one of the ones that we should be looking into. Because not only is it reported in many different communities, there's also other, you know, things that sometimes people will report in

(57:38):
conjunction with this condition, like the impacts of pollution, and how it affects them, or the impacts of nutrition, and how food deserts and other types of food production, right. impact. So theseare going to be some of the topics that Kristal and I talked about on our next episode together. We've already talked for about 45 minutes now. So I hope you all have enjoyed this Kristal, you're a gem, thank you so much for taking time, I know you're still recovering. And you have just this amazing heart, just still wanting to share and give and also teach that I also just see the side of you protecting, you're protecting others. And thank you for caring and wanting to do that for other people. Most people don't take the time to do that, or they don't do it to the level that you do. So this is again, why I wanted to highlight Kristal, she's going to be the first podcast episode for the social good magazine. And I'm so excited because I met her while I was doing advocacy for fibromyalgia. And she has just been such a voice, but also such a rockstar and a listener and a coach to me too. Because you know, at times, I'm like, trying to figure things out with how we lift our voices up around this topic. And she's guided me in ways so that I understand what the situations are and how to operate best and where to spend my time and where not to spend my time. So please, if you haven't, you know, check out Kristal can you're going to be able to see her information on my blog, you're also going to be able to see her page on the social good magazine, and you'll be able to see a link to this podcast. But Kristal, is there any thing that you'd like to share for how you'd like people to connect with you? You know, should they want to learn more about your organization and your work?

Sure, be happy to I am the founder of the fibromyalgia pain Chronicles and veteran voices for fibromyalgia and you can find Those on Facebook and Instagram YouTube. I'm also on tic tac, but it's real with Kristal and I do some awareness videos there but share a lot of content with my dogs to lift people's moods and stuff because it's hard living with a chronic illness. And I like to bring in a little splash of cuteness and fun to everybody's newsfeeds. I'm also on LinkedIn, Kristal catch the Fibro pain Chronicles and I have a website veteran voices for fibromyalgia, Facebook and Instagram in YouTube, you'll find so much information, and even some goofy videos of my dogs and I doing awareness videos for fibromyalgia, chronic pain and for veterans to lighten the mood. And there's just so much information and different topics that I think there's just something for everyone to relate to you whether you have a chronic illness or not. So that's where you can find me.

Kristen Thomasino (01:01:01):
I love it. So you know, like, everybody Kristal is She's in high demand, okay, she is at the top of her game with what she knows. And she's not a doctor, but she's an advocate. And she's lived a fantastic experience of life and teaching now. And this is what she's put together in these different tools that allow you 24/7 access, to read and to learn. And, and that's what I appreciate about this, because these things are available. And they point people in different directions. I know that with some of the work I've done, I've been pointing people you know, to your toolkits, they're amazing. When I go out to the VA hospital or meet up with veterans, I will say, you know, I've got this friend in Ohio. And she's pretty amazing. And her name's Kristal, let me show you how you can learn more about her story and some of the tools she use to get access to goods and services. So, Kristal, thank you so much, ma'am, for your service for our country. And you're just continued service to just want to take care of people. That is the true meaning of social good. And thank you so much for being on my show today. I appreciate it.

Kristal Kent (01:02:19):
I'm very grateful for being here. But thank you for using their platform to amplify the voices of anyone living with chronic and veterans alike. You're bringing about positive movement forward by showcasing people's personal experiences to make the world a better place.

Kristen Thomasino (01:02:39):
Thank you so much. Well, it's an honor telling people's stories. And this is just why I'm doing this right because I think our world needs to hear about people like you and others that are doing these positive actions in our communities. And I mean, look at you, she had a heart attack. And she's got a heart of gold out here just coming and just continuing to love and care and give and give. And, you know, I when I meet people like you Kristal, it gives me optimism for the world. So thank you, ma'am. And this is what we've had here today on the social good magazine show. I hope you all have enjoyed it. There's various areas that you can learn and listen more. And if you come out to the social good magazine.com You'll be able to see other stories in the future. So stay tuned. Thank you so much. All right.

(01:03:43):
The social good magazine is designed to inspire others to make a difference in their communities. Created by Kristin Thomasino. This show and magazine showcases the stories of people making a positiveimpact in their neighborhoods and beyond. Whether it's through volunteering, fundraising, or simply lending a helping hand, these individuals remind us that we can all make a difference. The social good magazine is the perfect tool for anyone seeking inspiration to get involved in their community.

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Kristal Kent, Disabled Army Veteran & Fibromyalgia Warrior, The Social Good Magazine Show - Video

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Kristal Kent, Disabled Army Veteran & Fibromyalgia Warrior, The Social Good Magazine Show - Video