EP 7 - I got diagnosed, now what? Understanding your disease process and the high cost of waiting with Aimee Passafiume Rossini
In this episode Aimee joins Priscilla to discuss:
Managing diabetes and heart disease
Dealing with research overwhelm
Learning about your medication (your doctor isn’t a pharmicist)
The high cost of waiting to understand your diagnosis
Filling in the knowledge gap
Connect, follow, and learn more about Aimee:
Text “Health Empowerment” to (502) 208-5879
Disclaimer
The information provided on this podcast by host and guest are for educational and general wellness purposes only. The information provided is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a licensed healthcare provider with any questions you may have regarding any medical concerns or conditions.
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Transcript
[00:00:20] Priscilla: Welcome, Amy. So happy to have you on the podcast. Can you share a little bit about your background and how you ended up in coaching?
[00:00:28] Aimee Passafiume Rossini: It's nice to be here.
[00:00:29] Absolutely. So I have been a physical therapist for now over a decade. And it's really the last seven years, a little over seven years has been spent in the home health industry, specifically working with hundreds of different patients. With a whole variety of different chronic diseases, and it really has just gotten to the point where, people are coming home from the hospital, sicker and sicker, and they're, getting kicked out, really before maybe they really should be, and a lot of them are not going to rehab facilities, number one, because nobody wants to go to a nursing home for really any amount of time, right?
[00:01:05] But also because, They have the ability to just go home and get the care at home. And fortunately for, some people with caregivers at home, they're able to do that. And. But with people coming home sicker and sicker, they are also coming home with less and less education. They have, some of them, not a clue what's going on, what their diagnosis is.
[00:01:27] They couldn't tell you anything that actually happened while they were in the hospital. Besides maybe I had some tests run, couldn't tell you what they are. But there are even some people who come home and their primary diagnosis is on their discharge paperwork. They didn't even know they had.
[00:01:43] So it got really, I think the straw that brought the camels back for me was I was sitting in the living room of a lady. Now this has been a, about a year ago now, and she actually had not even been in the hospital. She had just been a referral from her physician. And I sat in her living room and she had a diagnosis of Parkinson's.
[00:02:04] And I'm, asking her some questions about, what's going on and she, at one of my pauses she says to me, What is Parkinson's? And I perked up and I'm like, excuse me? And she had been diagnosed with this disease process. Roughly two years prior to this conversation that I was having with her and it just really blew me out of the water that nobody had sat down and actually had a conversation with her about what is this disease process?
[00:02:34] What does it mean? What is it? What are you going to be seeing? What? What does that mean for your body? And she really had no idea. And, so whether that conversation actually had happened and she just didn't understand any of it, or whether it had just not happened at all, I don't know.
[00:02:50] I spent the next 30 minutes explaining to her more in depth about what is Parkinson's and why are you seeing the things that you're seeing and what does that mean for your body and your function moving forward. And had she had that conversation two years before that, she may not have been where she was, functionally speaking.
[00:03:09] And yeah, I think that really for me, getting to the point where I'm just like, something has got to give, when's the last time you spent more than five or 10 minutes with your doctor?
[00:03:18] Priscilla: Me personally a lot, but like not a lot of people and not before I had my chronic health issues.
[00:03:24] Aimee Passafiume Rossini: No, for a lot of people you go in and you get five minutes, right? Maybe 10 minutes if you're lucky and they're just onto the next patient. It's not really the physician's fault. What Medicare and insurance have done to the documentation load and the reimbursement of services and everything these days, they have to cycle people in and out and they've got so much documentation, maybe their nose is in the computer the whole time they're in front of you, they've got another 20 minutes of documentation to finish when they leave.
[00:03:53] Yeah, it's crazy what it's come down to, but because of that, they simply just don't have the physical time to sit there and explain all these things to you, and so a lot of people, either they go in and have no idea what to ask, or, they, Forget to write all their questions down and they're like, Oh I don't know, or they, don't have the doctors to already on their way out the door before they've, finished asking all their questions.
[00:04:18] Or maybe they don't even understand what the answers are, then they don't ask for clarification. So it's become an issue and so I decided something's got to give and I decided to start my business as Camp Health and Wellness for people with chronic diseases so that they actually get that education and get that holistic perspective and really get treated as a person and every aspect of the person rather than just a diagnosis.
[00:04:43] Priscilla: I think that's so good. I think, and this is just my personal experience, sometimes you don't know the questions to ask.
[00:04:51] Aimee Passafiume Rossini: Exactly. Exactly. Most people don't. They don't have a clue. If you don't understand the disease process, like, how are you supposed to know what questions to ask, right? If you don't have any kind of medical background.
[00:05:03] Priscilla: Yeah, and so I would also be curious about the demographic. I previously worked in home health care as well and that is primarily an older population and now like my own health. I'm 28 and the conversations I've had with my female friends like I got my PCOS diagnosis and started sharing about it, oh yeah, I got a diagnosis too and I don't even know what it is, but I'm on birth control for it. You don't know what it is?
[00:05:29] Aimee Passafiume Rossini: What? Unfortunately, that's more common than not. It's crazy.
[00:05:35] Priscilla: Yeah, it really is. It's even for young people. And that's and maybe you can share about like your demographics and where you hope to go with that. But for me, I've been really surprised in my journey, how little like when I got my diagnosis, it felt like something really important.
[00:05:54] And I knew that there was misinformation out there and that the medical system hadn't caught up. And The reason why I even knew some of this is because, it's funny to even say this, is because of Instagram. Because I had been following some influencers, I think Meg Boggs, I think I'm saying her name correctly on Instagram, she's plus size, diagnosed with PCOS, does weightlifting was struggling with infertility and she had PCOS.
[00:06:23] So in my mind, that was someone who had PCOS. So when I went to the doctor's office and they said Literally to my husband, not to me, but they said, Oh yeah, she'll be fine. We'll put her on the birth control pill. And then when we want her to get pregnant, we'll put her on progesterone.
[00:06:37] Magic. Women with PCOS don't struggle with infertility, not to mention, which I think is some of what you focus on in the future diabetes and heart disease. Like those are like more likely to happen if you have PCOS. And so I'm like trying to be really proactive on like the front end, but a lot of people.
[00:06:56] I would bet a lot of people in America are just like, Oh yeah, this is what the doctor said. And yeah, I'm fine. And so don't even think about it for years.
[00:07:03] Aimee Passafiume Rossini: Exactly. And that's really where the issue comes in, is that they don't get that education up front. They just get the diagnosis and they're like, okay, this is what we're going to do about it, but they don't tell you really anything about the disease process itself.
[00:07:15] And then, so you think that this treatment is gonna, is, it just makes it no big deal, and you can just move on with your life, and you don't even really have to worry about it. But you're right. Whether it's PCOS or diabetes, or heart disease. There are so many, our bodies are so interconnected that there are so many different other chronic diseases that can end up escalating your risk for developing those things if you have a given diagnosis.
[00:07:43] So PCOS, your maybe gestational diabetes, for example, it makes it a lot more likely that you're going to have to deal with these other issues. And if you don't even know. what the disease is or how it's affecting your body. How are you even going to know that you're like, what does that have to do with heart disease?
[00:08:01] What does that have to do with diabetes? You don't even know, you don't even know what it is.
[00:08:05] Priscilla: Yeah, absolutely. So it
[00:08:07] Aimee Passafiume Rossini: makes a huge deal. And I actually am someone that did struggle with fertility and we went through the whole process also really to avoid a genetic disorder too, for us.
[00:08:18] And yeah. It was a process and it is a very emotionally draining process and to not even know What you're gonna have to go through In relation to a particular issue I just feel like that's a huge disservice,
[00:08:35] Priscilla: yeah, absolutely. I'll give you an example from my personal life, and you tell me if you've seen, obviously not giving away anyone's personal details, but you tell me if you've seen this or what your experience has been over the course of your career in physical therapy and now in coaching.
[00:08:50] I. After I had the initial thing with my PCOS, then I went and found a different doctor that I thought, would be a better fit. And that conversation ended up going with actually Metformin was really being pushed as like the way to manage this. And I was like, can I get in some information?
[00:09:07] And there seems to be like this disconnect between doctors aren't pharmacists. So they won't tell you. the specifics of the medication. You basically have to get the medication, go to the pharmacy, read the fine print, come back to your doctor with questions. It's just, it's not a flowy process. And like, all I was being told about metformin is oh yeah, maybe you'll have a little bit upset stomach.
[00:09:33] But I was reading what other people were going through and it just it takes so much intensive research.
[00:09:40] Aimee Passafiume Rossini: Yes. And most people also have no idea. What are the reliable sources for the research either too, but you're right I mean it you know blindly go in and they're just like here's a new prescription for you But some things with metformin it also can cause vitamin B deficiency Okay, that can cause fatigue.
[00:10:00] So if you're tired and you're on metformin, it also has been linked. I think to some cancers. So they've actually, I think, at least here in Louisville, they've, I think they've stopped giving it to patients in the hospital, even if that's what they're normally on, they will switch them to insulin while they're in the hospital and switch them back once they're home.
[00:10:18] Because I think that it's been linked to some cancers as well. There are, there's a whole plethora of information, right? But just because one person has a particular side effect doesn't mean that's going to be across the board, right? Which is why the list of side effects on medications is like stupid.
[00:10:34] But, that's absolutely right, they blindly give you this medication and they tell you, they generally have a night and know what it does. It's for this particular thing and this is the mechanism of action that it's going to take, but they don't like, there's.
[00:10:50] Truthfully, there's like a gazillion different medications. They cannot possibly memorize all of that. But they should at least have some kind of information there for you about a particular medication that they're prescribing, I would think. But you're right. The pharmacist is going to be your go to person to ask about all your meds, as far as like those interactions and like getting that information about each one specifically.
[00:11:12] And, but most people are also like I don't know what any of that means. But then it also ends up leading to multiple more doctor's appointments, and who wants to go sit in the doctor's office all the time, right?
[00:11:23] Priscilla: Just a lot of back and forth.
[00:11:26] Aimee Passafiume Rossini: Exactly. And there's very little communication.
[00:11:28] I think that they have put some processes in place. You know somewhat more recently where it's making it a little bit easier to have that communication across systems But I mean it really there's a lot of disconnect. There's a lot of waste that happens because of it and even, let's say you go to the emergency, you fall and hurt your leg, for example, you go to the emergency room and you get an x ray, okay they're like, you need to go see an outpatient orthopedic doctor, and it's not something you have to have surgery right that second for, so then you go make an appointment with your, with an orthopedic doctor, and then they're going to take another x ray, even though you just had one, right?
[00:12:06] Or they're going to take another MRI, or they're going to take another CT, and so not only are you getting all that extra radiation exposure, but then, You just had the test last week. Why do you need another one? There's a lot of that waste that goes into it, too, with that lack of communication, for sure.
[00:12:21] Priscilla: Yeah. I had it's funny that you say, then you go, and then you get another x ray. I have broken two bones now in my adult life. Ironically, they're both very quote, old people stories. One was falling down my back step, and the other one was falling in my tub.
[00:12:37] Aimee Passafiume Rossini: There you go! See,
[00:12:39] Priscilla: It literally does like people to be embarrassed, but like I was embarrassed.
[00:12:43] Aimee Passafiume Rossini: You know what? I actually worked with a nurse who fell in her tub and broke her wrist. Yeah. They're just,
[00:12:49] Priscilla: When I went into the doctors, they're like, there's no way you could have broken your arm. You would have broken your wrist. I'm like, I don't know how to tell you where my body broke.
[00:12:59] Aimee Passafiume Rossini: And you know what, sometimes it's like, how did that even happen?
[00:13:02] It's like a car accident. You're in a car accident and you're like, how did that car end up facing that direction over there? It's just, it happens.
[00:13:12] Priscilla: The other half of my kind of like my story with my doctor was like the second time I went to go see her, it was a year later because she was like a gynecologist and I went to go see her and I said, Hey, I, I have one of the things with PCOS is like male type hair.
[00:13:30] So like the excess testosterone, excess androgens. So I said, Hey, this is something that like I'm managing my health through diet, this is one thing that I can't fix. I can't handle it's making my life miserable. And so she had said you could maybe go on metformin again. And I was like will metformin actually help with that.
[00:13:53] And, like the logic, the thought process is it helps with the insulin. So then if it helps with the insulin, then that'll help with your overall liver and hormones. And then that would help with that. I think it's like the logic, but I was like pushing on it. Yeah. Yeah, and I was like really pushing for a conversation around like that she couldn't give me because it would be a conversation with the pharmacist, right?
[00:14:17] So then she's let me go get you some information on PCOS and this is a year into my diagnosis.
[00:14:24] Aimee Passafiume Rossini: And why didn't that happen the first day? Like the day that you got the diagnosis, why did they not hand you that packet? They got it at their disposal. Why aren't they giving it to you?
[00:14:34] Priscilla: I was like so mad.
[00:14:37] I was like so mad because if every woman who came into the doctor's office With PCOS and it wasn't like a packet on PCOS or like a cute little pamphlet She literally went to a met I think it was like almost like a medical type journal because she's like I think she's like this patient isn't it's not letting up So she went and she printed out this thing that Was like medical information around PCOS, but it was readable yeah, and She's like here.
[00:15:06] You can read this right? And so it was a relatively short read I probably read it in my car in 15 minutes after the visit. I went through it But it was
[00:15:16] Aimee Passafiume Rossini: after the visit
[00:15:18] Priscilla: it is it's a what if you have questions and so I went through it, and so much of it was information that I already knew because I'd read Hormone Health by Dr.
[00:15:29] Aviv Aram, and I'd done a lot of research, so a lot of it was information I didn't know, but I was specifically looking for the I think it's spirolactane, which is for the acne which one of my other doctors, I Brought it up again. And that's not something that we've decided to move forward with because, I was still curious because I still struggle with acne sometimes.
[00:15:47] And then the metformin in there, the pamphlet from the medical thing that she gave me said the opposite of her. It said metformin does not help with excess androgens, the hairs, the testosterone. And I'm like, ma'am, you did not even read this paper.
[00:16:08] Aimee Passafiume Rossini: Yeah, right? What? Isn't it infuriating? It's infuriating.
[00:16:13] Priscilla: Yeah, no, so that's one of the things, but ultimately, I think the main key piece for me, obviously your doctor giving you something that doesn't Align with what they say is one thing, but really the main key piece of that story for me is I should have been given that a year ago.
[00:16:30] What if I wasn't treating myself? For that past year?
[00:16:34] Aimee Passafiume Rossini: And the problem is that just like you, you're not, you go a year between seeing your, that particular provider, 90 to 95 percent. percent of medical decisions are made without even having any kind of medical provider involved.
[00:16:48] You were making decisions about what you were doing that entire year. You know what I mean? And what's, without a provider even involved in all of that conversation. Because it's such a pain in the butt to have to go make an appointment, sometimes you have to wait a long time to get an appointment.
[00:17:05] And, then you don't get enough time with them or they don't give you the answers that you need. And I think that for some of the time, it's maybe that they don't necessarily understand the intricacies of the diagnosis enough to be able to. Do you go that route? But you would think that with a specialist, dealing, I would think that a gynecologist office was going to deal with people with PCOS frequently, right?
[00:17:31] You would think that she would get these kinds of questions all the time and at least have that knowledge, right? But, at some point, they might be limited to the fact that, okay we've tried this, we've tried this, we've tried this. These are my options to give you.
[00:17:45] Priscilla: Yeah, I do feel like from just a standard point of view, like you should have an upfront, like maybe this is some basic info, right? That they should be able to give but then also The conversation that I had with my doctors and maybe we can lead this into how you serve your clients. The very first time after I'd seen the other gynecologist and switched to her, the conversation was like you should go on metformin.
[00:18:08] It was the same conversation a year later, but I said to her, I'm not going to go on metformin. I want to do this as naturally as possible. I had looked specifically for her because based on the website, she was open to natural type stuff. And she said, okay, yeah. But then , there was no additional guidance.
[00:18:27] I was sent to a dietitian and I had a, I private paid for a dietitian coach around the same time that first year. And that was more valuable than the dietitian that I had there because she just basically gave me like a really basic brochure about tracking your calories.
[00:18:46] What's that gonna do for me?
[00:18:49] And the doctor, when I said I was going to do things naturally, It was like, okay that sounds good. You do that. Basically, so when you talk about like those medical decisions, I say, okay, this is what I'm going to do. You're on board with what I'm going to do, right?
[00:19:04] Aimee Passafiume Rossini: But then there's no guidance to tell you how to do that. I would like to do it this way. Can we do that? Oh yeah, sure. Go right ahead.
[00:19:11] Priscilla: Yeah. And part of it. Yeah. Part of it definitely is like the time limitations that we have with our doctors, but ultimately, that's where I think we're coaching fills in the gap.
[00:19:22] Aimee Passafiume Rossini: That's exactly right. So the thing is that for most physicians now, we're not talking about the people who are like naturopaths and Natural medicine type of physicians because those people are better options for this stuff as far as like a natural holistic position goes they're going to have, better information for you, but for the majority of physicians out there, they've gone through medical school.
[00:19:46] They've learned. The, Western medicine, this is your route, and, don't really think outside the box. It's like the routine to just hand you a new prescription. But they don't really give you any ideas on that naturalistic stuff. They just don't know what all those steps are, and, like, how to address all that stuff.
[00:20:07] And you're right, exactly right. That's where the coaching comes in. Through my program, for example, I'm going to give you the education on the actual disease process, but then we also talk about diet. We talk about all of your different macros in depth. We talk about, a diet that is going to be best for your particular disorder.
[00:20:26] For example, I've got a lady working with right now that has rheumatoid arthritis, and she has an anti inflammatory diet that I recommend for her. And then I give you all kinds of lists of different foods that really fit into that particular diet plan so that you can choose what works for you.
[00:20:42] And, we talk about exercise, we talk about mind management, we talk about, medications. I'm working again with the lady that I have right now with rheumatoid arthritis. I've got a list of these are going to be your top most frequently prescribed medications. This is all the list of different ones that you can be prescribed, all the different names, the generics or brand names, how those medications work.
[00:21:07] Kind of the process that they're going to take in your body, what side effects you might see, what drug interactions you might have with those that you have to look at because there are a lot of things where certain medications interact with others that affects their efficacy or how they work in your body and as well as, food interactions, things like that.
[00:21:26] And But, it gives you that stuff. But then we also talk about sleep and stress management, because all of those things create a whole picture. You are not a diagnosis. You're a person. You have all of these different multiple facets of you, right? It's not just PCOS. It's about how it's going to affect you like your energy levels and, how all the other components of life affect your diagnosis, too.
[00:21:51] Not just the diagnosis itself.
[00:21:54] Priscilla: Yeah. One of the things, and this kind of ties in probably to what you just talked about, one of the things on your website or that we talked about in passing was intuitive lifestyle choices and like how you make those decisions. Can you talk about that a little bit?
[00:22:07] Aimee Passafiume Rossini: Absolutely. So Through my program, getting, gaining that knowledge, that health literacy of understanding, what you're dealing with, allows you to really then understand how each of the decisions that you make on a daily basis are then going to affect what you're dealing with on the inside and how that's going to end up reflecting then on the outside what you get back, right?
[00:22:33] Talking about, diet, for example, we'll start with something easy, like what you're putting in has a major effect on, what kind of nutrients that your body has to work with, what the energy sources are looking like, and then how each of those things are going to then Provide your body with the energy that it needs and the products that it needs to be able to create cellular energy and do all of its necessary physiological functions, right?
[00:23:00] Your body has to have a particular set of essential nutrients. It needs certain vitamins. It needs certain minerals to be able to produce all of the different processes that your body has to go through. to do, to undergo, to just function on a daily basis, right? And but when you have a diagnosis like PCOS or diabetes or heart disease or, whatever, what particular things that you need to have will change?
[00:23:30] So for somebody with diabetes, for example, you've got to have, like that lower blood sugar, right? So that you have a little bit more stable stuff. But we talk about not just having lower your carb intake because you can't completely avoid carbs. Everything has carbs in it. Fruits and vegetables have carbs in them, right?
[00:23:46] So you can't completely avoid carbs. You can't go completely no carbs. You would be drinking water and that would be it. But, knowing. Like what carbs to choose and then also when to choose those certain things and then how your exercise then factors in there and what that stuff does to your body to make those changes in that disease process.
[00:24:10] And if you know how that exercise or doing exercise in general is going to affect what's going on the inside, then you know, the day you wake up and you're like, I really don't feel like going to the gym today. You may like, you know what though, but if I don't go, then my blood sugar is going to be up and I'm going to feel like crap.
[00:24:26] And all these things. And so it gives you like that motivation to boost and make better choices on a daily basis, no matter what you're talking about.
[00:24:36] Priscilla: Yeah. How can people work with you?
[00:24:39] Aimee Passafiume Rossini: So you can follow me on Facebook. I do have a private Facebook group, camp health and wellness, better chronic disease management.
[00:24:46] You can see what we're doing there. I'm actually doing a reset do resets or workshops at least once a month in my group. So if you would like to get involved with those things are free as far as my coaching program, you can set up a health empowerment call with me.
[00:25:01] If you are ready to actually get moving on. Doing this coaching thing, if you're ready to actually make an investment in yourself and get that knowledge that you need to make those better choices and have that, long term impact that long term sustainability you can go to my website, camp h w.
[00:25:19] podia, P O D I A. com. I think all of these will be down in the show notes for you guys too, but but absolutely find me on Facebook and I'm also in on Instagram as well, but Facebook is definitely My platform of choice for sure there.
[00:25:34] Priscilla: Awesome. Thank you. Yes, they'll all be in the show notes. And then I wanted to ask,
[00:25:39] what is your hand me the megaphone moment? If you had a megaphone, you could yell into a crowd of people, one thing and you could help change their lives. What would that be? What do you think would be most important for them to know?
[00:25:52] Aimee Passafiume Rossini: I'm going to say that it's going to go back to something we talked about earlier and it's do it now.
[00:25:56] Don't just wait for, Oh, this isn't a big deal right now. So I'm just not going to worry about it. Do it now, focus on it now so that you don't have to worry about all those extra things later on. I, most of the world is like totally into instant gratification and what's going to make me happy right this second.
[00:26:13] And they don't have that foresight, but that's really the issue. You've got to do things now before they get to the point where you now have to deal with all these extras. So absolutely focus on it now while you can and have the ability to change that trajectory.
[00:26:29] Priscilla: It's so important. Thank you, Amy.
[00:26:31] Aimee Passafiume Rossini: Absolutely.
