Be Your Own Health Advocate

We are dropping the facts this week on Clarity Cafe! Starting with this little doozie…that nothing, and we mean NOTHING, is more important than your health Fam! Unfortunately for us… it’s usually the thing we neglect the most… ugh, right?

Well, it’s a good job we are rolling up this week to give you a special promotion, to appoint you as CEO of your own health from this point forward. Yup, this episode teaches us to be large and in charge of our lives and bodies and reminds us that everyone else is just a consultant. If they are one of the good ones, they will improve your health, and if they gaslight you or don't give you the answers you're looking for… move on.

Don’t stop until you get what YOU need. Congratulations on your promotion in this episode.

Transcript

Cali  0:03  
I am an advocate for myself. And when I go to doctors, I don't expect them to have superpowers, I don't expect them to have a crystal ball, I expect them to be seasoned in the discipline that they're in, I expect that they're going to give me the best knowledge that they have. And then I'm going to determine if that's the best fit for me or not heavily weighting their expertise.

Barb  0:27  
Hi, this is Barb. Welcome to the clarity cafe. I'm here with my clarity, sister, Kelly. And we're here today to talk about being our own advocate for health and how to navigate the healthcare system. Both of us have quite a bit of experience in that. And it has to do a lot with being able to have our own sense of self worth, and which we talked about in our last podcast, and having a compass where we can tell whether we're really advocating from a position of power, and also neutrality and clarity. Because these health decisions and health information can be kind of a charged topic for us as we go into these things. So let's figure out how to gather fam to be able to kind of take the charge off and be able to be assertive and our own advocate in our own health care as we navigate through the complexity of the healthcare system that we live in. So welcome to this topic. And we'll look forward to jumping in. So the first question is, you know, are you in a situation where you perhaps are challenged in advocating for yourself or advocating for someone else, sometimes we can have a friend or a family member that we see struggling? And we want to be able to offer some counsel and some help on how they can, with the least amount of stress, be able to navigate and get the care that they need and be heard. I think many of us don't feel super heard in these healthcare situations, particularly when we have complex histories, which I certainly have.

Cali  2:11  
I didn't know it was a question. Actually.

Barb  2:14  
I do.

Cali  2:15  
But but you know, that was

Barb  2:23  
that was a rhetorical question.

Cali  2:25  
Well, Barbara, and I think that's part of why we're, you know, pretty bullish on this topic, and helping people understand, first of all, what is an advocate? What, what does that mean, you know, well, pretty simply, it means that I am an advocate for what I need in this health care system, I think a lot of us approach the healthcare system and how we're related to as something that we have less control over or less power in. And we want to flip that concept upside down. Cuz truthfully, in the health care world, we are paying for through insurance, or Medicare, or however, cash, we are paying for these doctors and care providers to be consultants on our physical health case. So let's just take a moment to 180. I know that a lot of times we think they have a lot of power and they do, or that we should hand our personal autonomy over to them when we're getting care, or that we expect them to have all the answers or to know. But if we shift that to thinking of these folks, as consultants, and care providers, then we can have a perspective that probably is going to serve us better in the long haul. Because we're not handing over our personal authority and going well, here's a doctor, you should tell me what do I need to do to fix it? And they're just going to give you their professional, well educated and they've been practicing a long time, you know, seasoned approach. Health is not a one size fits all. So for first thing is just defining what is an advocate? It's someone and in this case, we're talking about being it for ourselves, although we will often be there for other people as well. I think that's a different topic, actually. But for today, is understanding that, you know, I am an advocate for myself, and when I go to doctors, I don't expect them to have superpowers. I don't expect them to have a crystal ball. I expect them to be seasoned in the discipline that they're in. I expect that they're going to give me the best knowledge that they have. And then I'm going to determine if that's the best fit for me or not. How heavily weighting their expertise, right? So they are well educated. And you know, if you're at the right doctor, they're well seasoned. But it doesn't mean that I hand over all personal autonomy, and just allow my health to be, you know, go down the river without me guiding some of that process and being active participant in that process which doctors need from us, they need us to actively participate.

Barb  5:25  
Yeah, and I think it starts with mindset, you know, we talk about cultivating a mindset of, of accountability for ourselves and honoring ourselves, we often turn over power to people in positions of authority. And as you were saying, for good reason, they have doctors and other providers have lots of training and experience. And we want to take advantage of that. But they also were, are very busy and have a lot of demands on their time. And so one of the things that I found was an early useful thing for me, as I taught myself how to become an advocate for myself, is I would make notes beforehand of all the questions that I had and the things that I wanted to review. And even just getting out that piece of paper that had seven or eight things written on it made me feel stronger, and that I wasn't going to forget something and I think also helps the provider see, wow, I want to be an active participant in the development of my treatment plan. And here's the information that I have. And here's some questions that I have. And particularly in this day and age of so much information can be quite confusing if all the online information and taking that information and distilling it down to, you know, the questions that you have, and the questions that that the doctor or other provider can help you with actually makes the interchange A lot easier for both of you. And you know, one great thing now is there's a lot of online tools, you can communicate with your providers via, you know, secure messaging, HIPAA compliant, which protects your healthcare information, whatever kind of portal you have, or whatever. And using those tools, and asking the questions from a position of being as informed as possible. And then taking that information and applying it to your own life. Because you know, your own health the very best only you live in your body, and know how you feel every minute of the day.

Cali  7:25  
And there are so many different ways we can take this right Barb, like, just so we could probably do an entire preseason on this. But let's, let's just talk about that online portal. So for a lot of phone calls, you know, for a lot of us, we have these communication ways that we communicate with our doctors, you know, used to be just calling them. Now you can maybe sometimes if you have a portal, you can submit emails or questions in their messaging. But let's take a perspective here. So how many 1000s of patients does a primary care provider have? It's a lot, it's in the 1000s. So when we go to a doctor, we might not even realize that somewhere on some level, we think something serious is happening with me. And it's as important to my doctor as it is to me, or if it wasn't important to my doctor, if it is important, my doctor, my doctor is going to advocate for me in the system to get more tests or get referrals just as much as I would advocate. And sometimes we by default, think that the messaging people checking the messages for the doctors, or the front desk people or you know, the medical assistants are assigning the same priority that we expect of our personal health. But if we can kind of just get a little perspective for those of us who don't work in health care, doctors have 1000s of patients over their career 10s of 1000s of patients and our their front desk, and their scheduling coordinators and the office management and the medical assistants. They are all constantly bombarded from the moment the phones or the you know, portals open up, they they log on in the morning till the afternoon, all day, every day competing priorities, a volume that you couldn't even imagine. And so I'm not making excuses for anybody's behavior. But what I do want to say is that when we understand that perspective, you know, they log on they've got all the health issues of everybody the day before what they're trying to do. And by the way, if they're trying to refer you out to somebody else, or you know a specialist or something, they may be struggling with the health care system just as much as you are if not more so understand that they don't just start with a blank slate and like here's So and So, message from me, I'll make that my top priority, it's like, overwhelming way more than any one single person should do in a day, every single day, major health stuff sometimes gets escalated or seen or noticed. But a lot of times, the priority that it may need to be is not the priority that it's been given. So advocating starts with kind of understanding what level of severity or significance or importance the health issue is. And if it's one that requires immediate turnaround or escalation, we've got to do that through the messaging portals through the phone calls through Office Manager, if required, maybe some offices have nursing staff who can be instrumental, like, shout out to the nurses right here, getting the

Barb  10:53  
job done. Love our nurses. Yeah, really

Cali  11:00  
just understanding level of severity of your health issue, and a reasonable turnaround time, but if it's important, we've got to keep knocking on doors, until we get through. Because we have to be the squeaky wheel Barb, you're like a master of squeaky kind wheel, you're like the master of that beautiful, I'm well educated, and I'm gonna annoy the shit out of you. And in a nice way, you're gonna love me.

Barb  11:32  
Hello, I'm still here. Yeah, I think that's one of the great blessings of having had, you know, a number of health opportunities for healing in my life, you know, from being type one diabetic to, you know, kidney failure, an organ transplant, and everything that's come after that, and all the management of that. And, you know, and I feel like now I'm already I'm in a position of, I can have those conversations, and not be triggered. But I do remember, moments of feeling very emotional. And I think it came from a feeling of maybe I don't deserve this, I'm trying to get more than these people are willing to give, and now I feel super at peace with everybody does want to help me, I just need to give them the right amount of information at the right time. And that's sort of a and be well prepared in that conversation to get through all the gatekeepers. So you know, for instance, in a large HMO situation, you know, you have a lot of people who are trying to add value every place along the path, and some of those are you new gatekeepers that you have to get through to get to the next level and being able to manage those conversations, even if it's a little frustrating, because they have to go through and ask you a certain number of questions. And you have to be able to answer those questions succinctly. And keep making your case. So, you know, part of this is understanding the healthcare as a business, as well as you know, an altruistic endeavor, and people go into health care, because they want to help people heal, you know, they can get a little worn down, right? If this, Callie was saying, you know, the days are busy, and there's lots of patients, and they're trying to do the right thing. And so, being able to, you know, offer a kind understanding, you know, realize you're really busy, but I'm very concerned about the fact that this happened today. And I feel like I need to have it addressed before the end of the day, and be unable to, you know, hold your space in that conversation and keep at it. And so yes, it definitely is a squeaky wheel. But, you know, my, my main way of getting through all of these is to be the person that, that they remember, because I was really pleasant, but also really knew what I was, you know, dealing with and could provide them with the information they need. And so doing your research, and also, you know, be realizing that only you can advocate for yourself in these situations, it's the most effective for you to advocate. And so I, you know, find, you know, being well prepared and going into the conversation, I have a great relationship with all my doctors and you know, one of the reasons why I love working in healthcare now at bio reset, is to be able to help patients who have been in situations where they've had a lot of challenges with the health care system because maybe they've had an illness, like chronic illness like Lyme disease or mold toxicity or some kind of chronic viral epstein barr, chronic fatigue, where the healthcare system isn't necessarily super well equipped to deal with those situations because they're complex, and and they're not in the mode of, you know, being able to see 30 patients or 35 patients in a day. like some of these providers have to do. And part of that is that is that the health care systems become very specialized, right. And there's infectious disease and you know, rheumatology and all these different specialties, which are wonderful and have lots of good research and, and advocacy treatment around. But being able to have a whole more holistic viewpoint, and really listen in, and I believe the future of medicine is really more like the model that that we're trying to bring forward, which is to take a full evaluation, and be able to let the patient be heard, and feel listened to, because that information actually will help you design a better treatment plan. And this is a little bit of heresy to the existing you have X condition and therefore, why treatment it's way more complex than that. And it's, you know, challenging, I think, for us as patients to be able to keep putting forward all of the factors that we're bringing into the conversation. And so that's one of the reasons why I love when a patient comes into our practice, we spend a lot of time upfront, gathering all the information, all the history, there just might be a piece that the patient has even thought of that is really affecting the condition. And it's a little bit of detective work, which is getting back to really traditional medicine where the doctor lived in the town and knew the patients and knew the families and knew that when you were little you had, you know, chickenpox and you know, then you broke your leg. And so there was all of that sort of community information, we live in a much bigger, less personalized version of that now. So, you know, think the future is for us to have healing is for us to recreate that more comprehensive approach, where we have a much bigger idea, but right now, as a patient, in this moment, you're really the only person who has all of that information. And so being able to bring that into your treatment and to your providers, in a succinct way is challenging. I mean, when people say, Well, what's your, you know, give me your medical history, I'm like, Well, hey, you know, how much time you got, I got several different versions, depending on, on what I'm trying to get out of this moment, and how much time the practitioner has, because, as part of that, recognizing that, that everyone's busy, and there's a lot of pressures, and a lot of patients vying for that. And so that being the squeaky wheel, in a friendly and assertive but pleasant way, and not being upset, when you realize that you're dealing with a lot of competing priorities, and just being able to kind of stay at it, even if you don't succeed the first time. Keep the faith and, and keep pushing.

Cali  17:50  
Yeah, it's a it's an art form. Really, it's an art form. And it's okay, some of us may be better at it than others, but it's okay to understand that we're practicing and to continue to practice. So Barbie made a good point about having as succinct as possible, as appropriate, the right amount of information, giving the right amount of information in the right amount of time to the right people, so that we can get heard and have our cases acted upon. So those are sort of really basic takeaways, and then our demeanor and how we relate to people because, you know, it is triggering and it is really charged. And, you know, there's another side to this, which is, you know, there is a long history of

what did health and medicine and wellness mean, and, you know, there were times and traditions and still are of people who that live closer to the land, have herbal wisdom have natural healing wisdoms and techniques. And, you know, there is a big history of when we decided as a society that women would no longer be valued, they wouldn't be allowed in medical schools at all. Through the witch hunts, you know, we took well, the numbers are high, no matter what, but I, you know, we millions of women were murdered in the name of being witches or practicing natural medicine or natural techniques. And so not to like go too deep into that, but I think that it's important that we understand two things. Number one, allopathic medicine, Western medicine, to date has a long history of excluding a lot of wisdom and ancient knowledge of our bodies and how we connect to the planet and how we heal. However, I am not saying that there's not a place for allopathic medicine, BB is a is a kidney and pancreas transplant. I have taken my share of antibiotic Because I have saved my life on more than one occasion. I've, we've had surgeries, we've had all kinds of stuff. So there is a time and place for allopathic medicine. Absolutely, and huge fan. And during these times, I cannot say enough about the heroes of people that are out there still providing health care and this difficult difficult time that we are all living through. So hats off. And I want to acknowledge and respect and admire all of that work, and deep gratitude. And I want to say historically, there's been a massive gap. And what does that lead down to here and now will it means as a woman in health care, I can be gaslit it means that when I got sick in 2018, for six months of collapsing, of falling down and going listless on the ground, to be being having random infections that the doctors couldn't figure out having like arrhythmias in my heart, having my heart rate go up, have my blood pressure go up, and then tank having significant neurological issues, memory issues, some of you guys will hear me kind of fumble in my words and still healing some of that. But it means that from January when I got bit by a tick and got Lyme disease, to the first day that I walked through the door at bio reset. I had a bunch of physicians trying to figure out what was wrong with me and literally being like, I can tell you what's happening, but I can't tell you why. And I can't tell you like they can tell me oh, well you have dysautonomia or you have high blood pressure that goes low, hypo and hyper. They could tell me I've gotten infection, but they couldn't tell me what was wrong. They couldn't say, oh, you know, you actually have Lyme mold and environmental illness stuff that, you know, creates the whole picture. So I bring that up. And I know it's kind of a reveal here about my own house. We've talked a lot about Barb's but the day I walked through the door to buy a reset with Barb, being one of the people that I met, I knew that all of those doctors for six months had no answers for me. And I had I was hospitalized for my heart like and they released me saying I don't really know why that just happened. We see on the test it was bad. Follow up with a cardiologist. I know you've spent two days in the hospital. But here you go, hope you don't drop dead. So when I walked through the door by reset, I had been gaslit I had been told by neurology they can't see me or they don't see my types of cases, I'd been told that Lyme, you know, was not something that they treat. I mean, it's it was been a road. And so I want to say I you know, here's the joke, y'all, because this is one of our nice favorite jokes. I walk in the door, I met Dr. Cook. And I met Barb and to Dr. Cook had come in and talk to me a little bit about what he thinks might be going on, and that we've got to do some testing. And that Lyme is, you know, Lyme and parasites and stuff. We're gonna go check that out and see if there's a thing. And I was like, Look, I've been to 55 countries, I have no doubt. I've got some parasites. I drink the water, I'll admit, for sure. That's gonna come back. But lime. No, no, I don't have lime. And Barb was like, Yeah, I think you do.

Barb  23:30  
Yeah, so it was it's one of our favorite bonding moments, because I remember you kind of went like, oh, maybe she's, because I, and the reason why I said that was you know, because I had seen a lot of it. And because we just did our clinic, where sometimes called like a clinic of last resort, you know, where people have been through and similar experience to you, Callie, where they've been to a bunch of specialists and doctors who go, who can describe back to you what your symptoms are, but can't help put them in a context. Because it's so complex to be able to develop a plan. And it's, you know, really this was G's approach, you have to just get all the data, you know, all the testing, which we did, to confirm, and I would my $1 bet. So that then we have real, a really good basis to move forward. And I think, you know, on a on a hopeful note, I think we're we're so blessed to live in a time where we have this kind of testing available, you know, we have this more complex, you know, functional medicine testing, where we're looking at digestion and whether people have some kind of so many issues are stored in the gut, right, whether it's small intestinal bacterial overgrowth, or all the kind of food allergies and more sophisticated testing for viruses and bacteria. And, you know, we're the technology is there to help develop the testing and they're starting to be much more of a mindset in the medical community have this broader conversation, there's still a behemoth sort of medical industrial complex that, that operates that we've talked about. And it just kind of churns along but, you know, I was talking to some young medical students the other day, and they were like, Yeah, we're talking, we're starting to talk about that in medical school now. And they're super excited to hear about what we're doing a bio reset and want to come and shadow and, you know, potentially maybe have regenerative medicine and functional and integrative medicine be something that will become a recognized specialty in medicine, and that would be a place for them to put their value and, you know, do invest their time. So, I'm personally very excited that we're kind of moving into that space. And, and, you know, one of our missions is to educate other providers, as well as patients, on all these, you know, additional options and different ways to look at illness, and a more holistic fashion. And that's a huge topic. But I think as we talk about this as a problem set from a patient standpoint, you know, yes, there are challenges, and we do need to be our own advocates. And, and the blessing is we have access to a lot more information now. And it's incumbent upon us to educate ourselves and seek out and Kelly, you're an expert at seeking out the different practitioners, functional neurology, and different kinds of practitioners that can help, you know, understand these multifaceted, complex situation and you know, autoimmune disease is an epidemic in our country. And we recognize that that, you know, has a lot of implications in terms of how our body deals with challenges to the immune system, you know, as a society, we need to deal with this, and we are starting to be able to deal with this, you know, whether we want to or not, it's coming. And, and there's more naturopath, and there's more, you know, understanding of that, and people are starting to understand the importance of diet and sleep and, and how we can control a lot of those things and help ourselves sort through the confusing amount of information that's out there. And rather than just like, oh, the new recommendation by this board, or this, you know, organization of doctors is x, but the larger context of, of environmental illness and, you know, things that were not taught in medical school and are still not taught in medical school, but they're starting to be a lot more understanding of that, as I've watched, even just the conferences that we go to, you know, really increase in size and topic and scope and the voices start, you know, more voices being heard, I think it's all very exciting and hopeful. And as your own advocate for yourself, plugging into that energy is, you know, can help us feel not so alone, and like, Hey, I'm over here with a complex situation, but no one seems to really understand it. I think we're starting to get more and more aware. So no matter where you are, in your health journey, you know, there are people out there who can help you and you, you know, we want to be a beacon of that, you know, as individual patients, but also as medical practitioners.

Cali  28:06  
So there's a lot there to unpack, but let's bring it to the basics. First is be your own advocate, and understand that's a role that needs to be fulfilled and only can be fulfilled by you, you are the CEO of your health. Everyone else is a consultant. If they're a consultant that's got information that proves and changes your health and your life, great, keep using them if you're gaslit, or you're told by that consultant that they don't know or they're not willing to refer you find somebody else who will get to the answers that you're looking for deep respect for functional medicine, allopathic, medicine, natural medicine, and the most respect for the Venn diagram where all things come together, and we're treated as whole beings. That being said, if you're being told that something's just in your head, or that there's nothing that can be done, do the research, find somewhere else to go and don't stop until you get what you need. This is your life and your body, and you are responsible for that body. The next piece is to understand that if you're in a complex situation, such as Barbara and I are both in complex situations that it may take a team of people to help navigate your unique situation. So putting a team together rather than looking for a single provider to answer that question is going to be very powerful and moving you forward. The third thing is is that we're obviously huge fans of bio reset and not everybody can have access to something like buy a receipt may not be, you know in the US might not be a place that you can go however, there are local answers for you and and some of them will be in the traditional health care system and some will be operating outside of that. So finding the balance of what works for you, and what changes your life is super important. And I think third, you know, we are big fans of research, scientific backed research, not opinions. So educated, consulting on our health care from educated providers, super important research that's been done and conducted. Scientific validation, super important. And being as educated as we can about our own conditions can help us help our providers be more successful in finding the right answer for us. So want to encourage, learn as much as you can. And in my story, because you know, kind of dropped my whole story, there are a piece of it, it was very, very sick in 2018. And I still have things in my house that I am working through. But the fact that I can make sentences now is a significant improvement. And I was not able to really make sentences or talk for more than a few minutes at a time. So no matter how hopeless Your situation may be, find your answers, whatever those answers may be. And for our fam out there who may be living with a condition that's terminal, have a lot of family and friends, and people I care about that, you know, their health situation was the reason that they left their bodies. And we've got an entire nother set of conversations that we can have about that, but just want to send you love and say that if you're not getting the help that you need, with your current healthcare situation, or the people that are, you know, around you, even if you're, you know, in a terminal situation, keep advocating so that you can have the most comfortable transition possible. And we love you and you are loved no matter where you are on your spectrum of health and wellness. And some of us long haul, chronic wellness situations, and long haul could be another entire podcast. But now that COVID is something that has come up. Lime no longer is the only thing that has long hauls that doctors are scratching their heads at. So I'm sorry to say we welcome you into the community of long haulers, US limeys. And we're sorry to see you here, but we got you, and we're here for you.

Barb  32:36  
I love all the points that you just made. Callie and I'll just follow it up with one place to seek help and seek information and just hang out is on in online support communities. There's wonderful communities, whatever social platforms you're on, you know, there are wonderful communities, where you can just say, Hey, I'm having a rough day. And people will say, Yeah, me too. Let's, let's, you know, help each other and lift each other up all the way to, you know, has anybody ever heard of this, and this and this medication use with this, and this and this and, and everything in between? I think it's important for us to realize that we're not alone and online support communities are one really wonderful way to do that. So again, a blessing of all this technology that we have available to us is that we have access to those communities. And so I encourage you to, to take advantage of those and, and participate to help people and help yourself on that Barb.

Cali  33:40  
I am a huge fan of online communities as well. But I do feel we need to have a little obligatory. There are a significant number of online disinformation communities. So 100% We are 100% not advocating for that, that is not helpful. That is destructive, and just want to make that clear that we don't we don't participate in that. And this is more about, you know, a transplant community for BB, you know, a neurological Lyme community for me exactly. Ones that practice using data and research and, you know, evidence based medicine, incredibly helpful

Barb  34:24  
and, and, and are heavily moderated. I mean, that's super valuable as well as too, you know, and part of that is, is you know, to go back to some previous podcasts is really curating what voices we have in our lives and particularly around our health and finding the positive informative ones and and letting go of the rest of them and it's it's easy to listen to you know your friend or whatever and kind of go down a rat hole if they're if they've gone down a rat hole but, but being able to have that discrimination, to your point, Callie of making sure that You're in a community where, where they're valuing science and valuing people's experience without jumping to some kind of wacky conclusions.

Cali  35:12  
That's it, right? It's the ultimate take what works, leave what doesn't. And it's a heavy topic, y'all. And we get it, we get it to heavy topic. But we want you to be well, when we say be well, we mean that from one end of the spectrum to the other of being well, and so it's just really important that we know that we have valuable voices to raise in advocating for our health and our well being. And so yeah, we're grateful to have you on the journey with us as we explore these topics. And for those of you who have taken the time to subscribe, or are ready to take the time to subscribe, and like and leave us a review, on our podcast and on our social channels. We appreciate you. That's how our little podcast continues to grow. We spend a lot of time making sure we've got really good social content for you shareable stuff, we are committed towards changing the community online, the conversation online, and filling that with stuff that, you know, fulfills our minds and makes us happy and brings the joy. There's a lot of content out there right now that is, kind of breaks us down one cut at a time. So we want to make sure we're doing the opposite. So thank you for contributing to our community, and to subscribing and spreading the word. On our next podcast, we are going to talk about how to manage expectations versus reality and fine tuning, knowing the difference between those two and maybe recalibrating a few of those things. So until next time, take what works. Leave what doesn't and hey, clarity, fam. Be well, we love you