Episode 167
Table of Contents:
Table of Contents:
In this episode:
In this episode:
Introduction
When Rhonda Nelson was diagnosed with AERD (Aspirin Exasperated Respiratory Disease) in 2000, she learned firsthand the importance of becoming the leader of her healthcare team. Today she shares her journey to diagnosis, tips for coordinating multiple specialists, and strategies for becoming your own best health advocate - including specific techniques for making the most of limited appointment times and ensuring all your doctors are on the same page.
Episode Highlights
The Journey to Becoming Your Own Health Advocate
Rhonda shares how her complex diagnosis taught her to take control of her healthcare journey.
- The importance of documenting symptoms and medical history
- How to present information to doctors efficiently during short appointments
- Why treating first appointments as "interviews" helps find the right healthcare provider
Coordinating Care Between Multiple Specialists
Understanding how to manage communication between different healthcare providers is crucial for optimal care.
- Why patients need to take the lead in sharing information between specialists
- The value of keeping a detailed medical journal
- How to effectively communicate with each member of your healthcare team
Combining Traditional and Alternative Approaches
Finding the right balance between conventional medicine and complementary therapies.
- The importance of being open with your healthcare team about all treatments
- How to research and discuss supplement use with your doctors
- Finding practitioners who are open to integrated approaches
Supporting Your Body's Healing Journey
Rhonda discusses her comprehensive approach to maintaining health.
- The role of targeted supplementation
- Importance of movement and finding the right exercise approach
- Alternative therapies including red light therapy, infrared sauna, and cold plunges
Managing Relationships While Living with Chronic Illness
How to maintain strong relationships while dealing with ongoing health challenges.
- The importance of open communication with family and friends
- Understanding the impact on caregivers
- Strategies for explaining invisible illness to others
Notable Quotes from this Episode
We must be the leader of our team. That is another thing that I just stress and I cannot stress enough.
Rhonda Nelson
Keep a medical journal so that you can quickly say to each physician, this is what's going on. This is what Dr. So and so prescribed for me. This is what they said.
Rhonda Nelson
Other Resources:
Other Resources:
Connect with Rhonda Nelson
Connect with Rhonda Nelson
Watch this interview:
Watch this interview:
Episode Transcript
Rhonda Nelson:[00:00:00] We must be the leader of our team. We're dictated now by the insurance companies telling us who we can and can't see. Keep a medical journal so that you can quickly say to each physician, this is what's going on. Be your own leader and advocate and speak up because that's the only way you will get the treatments that you need that are right for you and for your body.
Julie Michelson:[00:01:00] Welcome back to the Inspired Living with Autoimmunity podcast. I'm your host, Julie Michelson. And today we're joined by Rhonda Nelson, renowned patient advocate, author, speaker, and philanthropist. She's a beacon of resilience and strength. Rhonda serves on the executive board of directors with the Asthma and Allergy Network, impacts legislation and speaks nationally, raising awareness for AERD, Aspirin Exacerbated Respiratory Disease.
Julie Michelson: Having dealt with it herself for more than 20 years, Rhonda has experienced many misdiagnoses, a near fatal struggle to find relief, a desperate search for answers, and a constant journey to access proper support. Rhonda and her husband Wayne of the Little River Band tirelessly devote their time and resources to helping others navigate this often challenging medical journey.
Julie Michelson: In [00:02:00] today's conversation, we're talking about the importance of advocating for ourselves and finding the right physicians to support our journey. We talk about AERD and chronic inflammation and how important it is for us to incorporate healthy lifestyle into our approach to wellness in order to optimize quality of life.
Julie Michelson: Rhonda, welcome to the podcast.
Rhonda Nelson: Thanks so much for having me.
Julie Michelson: It is absolutely my pleasure. I'm excited for our conversation. I love talking about stuff we haven't talked about before on the podcast. And I always really get it cause I'm such a geek. I get excited when I'm reading about people and doing some research and I'm like, wow, I've never even heard of that.
Julie Michelson: So, um, I am very excited for you to share your journey. with us. If you could just start by, you know, sharing, I guess, your, your health journey first, but whatever parts of your [00:03:00] journey you feel called to share with us.
Rhonda Nelson: Well, thank you so much for having me. And I, I wanna preface all this by saying I get super excited when I hear people say, I haven't heard about this before.
Rhonda Nelson: And it opens another door for me to advocate for the disease, which is A ERD. I'll explain that in a minute. Yep. But then also advocate for patients in general. I, um. And
Julie Michelson: that's the, the big picture of why we're at, why I, why I have the podcast, right. And, and why we're having this, this conversation because, um, we'll get into it, but you know, being our own advocates and is important.
Julie Michelson: And I know the work that you have now been called to do is shedding a lot of light on AERD.
Rhonda Nelson: Yeah, so I'll just, I'll just jump in. So AERD is, um, short for Aspirin Exasperated Respiratory Disease. [00:04:00] It was formerly called Samter's Triad, but I, everyone now just, we, we refer to it as AERD. And so back in 2000, I, I got sick.
Rhonda Nelson: It was at the very beginning of the year, and I just, and it was in January. I thought I had a cold, but we also were, um, spending a bit of time in California as well, and, um, you know, I thought it possibly could be some seasonal allergy things. Um, so I didn't think a lot about it until we got back home and like, this just kept getting worse and worse.
Rhonda Nelson: And I would wake up in the night, like, gasping to breathe. I would have these flares where I would sneeze. And I don't mean just A tiny at you. I mean like rib breaking, ouch. Sneezing for hours and hours [00:05:00] this would go on. Um, and so, you know, as you do, you start to try to figure out what's going on. And I, you know, just by process of elimination, I started with an allergist.
Rhonda Nelson: And, you know, they said, Oh, well, you're allergic to trees and grass and mold and blah. And, but we were getting nowhere, but we then found out that I also had nasal
Julie Michelson: polyps.
Rhonda Nelson: Um, and so that it was recommended that we have, that I have a surgery to have those removed, but I'm still getting nowhere. Right. And these, these attacks, if you will, or flares of.
Rhonda Nelson: like literally my throat closing and gasping for air, um, were still happening. So we, we knew something still wasn't right. And, um, I had never had asthma as a kid. Um, and so it just was, you know, we're just on this quest to find out. And [00:06:00] it took two years to, um, to find a physician that actually. Pinned the diagnosis and and knew exactly what I had and then that led down a path of you know Finding the right maintenance meds and and such as that.
Rhonda Nelson: So now going back 22 years It's it's very it was it was different than than it is now. It was much more difficult to diagnose than the the medical or the the medicine maintenance that was available. Um, obviously we've had some advancements and it's better. And so things, you know, it's been great to see those advances throughout the years.
Rhonda Nelson: But it was really challenging in the beginning with the diagnosis.
Julie Michelson: Which I can imagine and I'm sure there's some listeners. Um, I think most listeners know what it's like to hunt for a [00:07:00] diagnosis. Um, and there's not, you know, I don't actually know I need to find out the current stats of. Um, back when I was diagnosed with rheumatoid arthritis, the average autoimmune condition took eight years to get a diagnosis.
Julie Michelson: I think now it's so on the radar. Um, and I always end up saying like, I wish you hadn't been diagnosed. Let's just reverse the whole, right? But this is a little, a little different and we'll talk a little bit about that. You know, the emotional piece of, you know, hunting for the diagnosis, um, as I was listening to your story, I'm like, yeah, they're going after the symptoms, right?
Julie Michelson: Like, oh, you know, the asthma is allergy related. Oh, get the polyps removed. But like, why do you have polyps? And are they just going to come back? Like, so, um, I want to just again, because I had never heard of, of AERD. Um, and [00:08:00] exacerbated is in the name, but this is not caused by you taking aspirin, correct?
Rhonda Nelson: No. Um, it, it's a chronic inflammatory disorder of the sinuses and lungs. Um, it's a, if you will, to be simplistic, it's a chemical imbalance within the patient's body. Um, the exact cause is not known. But we do know that it is not an allergic response. Um, so having said that, it's also not considered an autoimmune disorder.
Rhonda Nelson: Um, yet. Correct. I always say the operative word is going to be yet. Right.
Julie Michelson: Well, when you hear, you know, chronic inflammatory, right?
Rhonda Nelson: Exactly. Exactly.
Julie Michelson: But then interestingly, aspirin and NSAIDs and things people typically do to reduce inflammation [00:09:00] before they know other ways actually make it worse.
Rhonda Nelson: actually will send you into the um, anaphylactic shock.
Rhonda Nelson: And so therefore just treating your, your basic headache or your basic backache or, you know, I've got, we moved and I moved a lot of boxes and now I'm just stiff and sore. And so we typically will reach for an inset or an aspirin. Um, you can't do that. Don't do that. Right. So it, it creates some complications when we're starting to look at then, you know, what do we do day to day to maintain, um, but I think we've also come a long way in understanding inflammation within the body.
Rhonda Nelson: And I know they don't want to call this an autoimmune disorder, but with semantics, [00:10:00] right? Right, exactly. Exactly. So by eliminating inflammation within your body, it has been shown in patients to, um, it doesn't cure this disease because at this point there's no cure for a E. R. D. But what it does is it allows for a little better quality of life, a little better, uh, disease maintenance, if you will.
Rhonda Nelson: And so there, you know, it, there's a lot of different things that you can try. Now, some of those things, your doctor will probably look at you and tell you you're crazy. Yep. Mine did. Exactly. So that's the, that's the other thing. And that's where I really get on the platform and say, Hey, wait a minute. We, yes, we trust our doctors and yes we need our [00:11:00] doctors to give us the diagnosis, but then it's somewhat going to be up to us as the patients to go down the road to figure out other things that will help heal the body from within.
Rhonda Nelson: In addition to the meds that we have to take, because if you start to heal from within, then you will most likely, and some patients have be able to come off of or step down from some of these chemical medications that we're putting into our bodies. Which is
Julie Michelson: fantastic. But I always say too, the goal is to feel your best, right?
Julie Michelson: So if you think of step one of like these other things we can do to reduce inflammation is, Hey, let's, let's just let the medication work better. And a lot of people think I'm anti prescription because I came off of all of [00:12:00] mine, but it was just, as you said, I was healing from within and my doctors were taking my meds away, you know, cutting them back, taking them But the, the goal is always.
Julie Michelson: quality of life.
Rhonda Nelson: Absolutely.
Julie Michelson: Absolutely. I love, we're very aligned. Yes. Yeah. There's no badge of, do you take a prescription or do you not? Like who cares? Who cares?
Rhonda Nelson: Exactly. And you know, I think, I think, and especially in my case, I don't like to take medications. And so when I see all of these medications, I'm, So I'm concerned as to, well, yes, they will the issue at hand and what, what are they doing that isn't healthy or isn't helping my body.
Julie Michelson: Yeah, I agree. I agree. But first is always, you know, hey, let's. especially as we're figuring [00:13:00] stuff out. Um, and I did go through a phase in my healing journey where I just, and it's because of the throw medication first approach, you know, that I became very opposed to, you know, and, and now I'm like, no, there is a time and a place to control some things.
Julie Michelson: And I will
Rhonda Nelson: tell you until I was controlled with meds, Yeah, I didn't have the energy or the brain power.
Julie Michelson: Yep
Rhonda Nelson: to even go down a road of other modalities that would be beneficial to me and to my body. It wasn't until I got stabilized and got the quality of life that we spoke about back. Sure. That then I was like, okay, this is great.
Rhonda Nelson: We've we've gone from really the worst possible scenario to now we have a diagnosis to now we have some meds that will Settle things down [00:14:00] if you will yeah, and then I can start to focus on the other things and in my case Um, you know, there were quite a few drugs And so, okay, let's get let's get stabilized and then let's start to see what we can and cannot eliminate And and i'll I mean i'm sure you experience this too Your physicians or your medical team is not always on board with that They sometimes are like, Nope, you must take this and you'll never be able to get off of this.
Rhonda Nelson: End of story. I think we've advanced in our ways of thinking. We've advanced in understanding health and what is healthy for our bodies. So I think we are, as a population, becoming more in tune to, Thank you for the meds. Thank you for the help. I'm going to explore these things too. And I'm going to continue to listen to my medical team, but I'm also going to do my own research for my own body because my [00:15:00] body, your body, and everybody else's body is not the same and we don't react the same.
Julie Michelson: Amen. Yeah. Um, and listeners know I, I am definitely not anti physician. I'm yeah, me either, you know, marrying one shortly, so, um, and I'm very grateful though he's a, he's a, he's a functional medicine physician, so we're, we're aligned. Um, but. I do think historically we have been kind of trained to a, you know, the kind of, you know, doctors know it all and they have the answers and we have to do exactly what they say.
Julie Michelson: And, and B, I think at least I did when I was younger, we tend to think that the prescription is the fix.
Rhonda Nelson: Correct.
Julie Michelson: And, and it, when in fact it's, I don't know of a prescription that cures anything.
Rhonda Nelson: It's a band aid.
Julie Michelson: Yeah. And, and sometimes a very necessary one is, you know, again, um. But so I love that. And the other thing [00:16:00] that kind of goes along with advocating for yourself that I know a lot of people are still really uncomfortable with is you don't have to stay with a physician who has a completely opposite ideology from you.
Julie Michelson: That is correct. Working with somebody who isn't open. It doesn't, doesn't mean they have to agree with everything you want to try. Cause that, to find a physician that's going to do that is. It's really tough, but we, we forget that we hire our physician and therefore, if it's not the right fit, we can find another one.
Julie Michelson: So
Rhonda Nelson: I love that you just said that we hire our physicians because I just had this discussion the other day, whenever I have my first appointment with a new physician, that is in my mind,
Rhonda Nelson:[00:17:00] Because it doesn't matter if everything else about the practice, the person, the protocols that they might prescribe, that can all be perfect. 100 percent spot on. But if that doesn't work, Physician and myself cannot gel, cannot have a conversation, and cannot, I cannot express the things that I need to express.
Rhonda Nelson: It is not a good fit. It is, it's not going to be. I think maybe our parents generations and before, they went to the doctor. What the doctor said was, the gospel and that was the end of it, right? And we would typically hear, I mean, I'm sure people of our generations that have older parents, Oh, my, my mom or my dad, they're on so many medications.
Rhonda Nelson: Well, yes, because that's what, Doctors did, number [00:18:00] one. Number two, those generations never left their physicians, unless they, for the most part, and they also thought everything they said was the gospel. And so they would not dare do anything different than what the physician said. Not only that, they would never speak up if they didn't agree or didn't understand something.
Rhonda Nelson: True. So, you know, I think, I think we've come a long way. Um, and I, I hope younger people continue to do that because, you know, it's, it's just important to know what a drug is doing for you. To the rest of your body as it is to know what it's doing to the disease that you have, or doing for the disease that you have.
Julie Michelson: Absolutely. Absolutely. And I, I think, you know, knowing in hindsight, you know, anybody who says what, obviously you were told and I was, you [00:19:00] know, that, that you'll have this forever and you need to stay on X forever. I don't care what is, um, be skeptical at least, you know, and because the body is designed to heal.
Julie Michelson: Right. And, and one of the things when I was listening to your journey, it just reminded me, I was like, well, you know, I could see how, how difficult it could be to get an accurate diagnosis, because I'm guessing, you know, you're the allergist is treating the asthma. And I'm assuming they sent you to an ENT when they found out you had the polyps.
Julie Michelson: Right. And so, and
Rhonda Nelson: then you have a pulmonologist in there as well.
Julie Michelson: Yeah. And, and so there, the, there's this, and I know most people have a primary care physician, but if your primary care physician's only spending 15 minutes with you during an appointment, you know, that's different than having [00:20:00] somebody lead your healthcare team.
Julie Michelson: Right. Who sees the, the big picture? Right. Um, and so I just wanted to highlight that for people that that is kind of a it's one of the reasons it takes a long time to get but then you you get, you know, It's that Western medicine, you know, each, each organ system has its own specialist. Right. As treating the
Rhonda Nelson: body as a whole.
Julie Michelson: Talk to each other. Yeah. And no, they do
Rhonda Nelson: not. And that is why, that is another thing that I just, I stress and I cannot stress enough. We must be the leader of our team. Yes, please. And so, um, but what makes it hard is that, you know, we're dictated now by the insurance companies telling us who we can and can't see telling us.
Rhonda Nelson: telling them how long they can spend with a patient, right? Yeah. So, um, you know, one of the biggest things I say, and I wish [00:21:00] I, if I could have told myself, my younger self, this, I would have done this. Keep a medical journal when you're, when you're, when you're in a situation where you don't have a diagnosis and you're, you're, you're trying to find that diagnosis, and then you get diagnosed.
Rhonda Nelson: And you have all these doctors who don't have barely enough time to see us, much less talk to the other doctors in your medical team, right? Keep a medical journal so that you can quickly say to each physician, this is what's going on. This is what, you know, Dr. So and so prescribed for me. This is what they said.
Rhonda Nelson: I don't, you know, I am not anti physician. I am not anti medication. I am a pro. Be your own leader and advocate and speak up because that's the only way that you will get the treatments [00:22:00] that you need that are right for you and for your body,
Julie Michelson: which I love, which goes back to, you know, we are all individual.
Julie Michelson: And so nobody knows what's going on in our body. Um, and so I love that because I, I do think it is a big shift to this idea of being your own health care advocate, right, being the leader of your health care team. And it doesn't mean we all need medical background and, you know, um, let's talk about that a little bit because you, you, and then I, I do want to get into a little, a little bit more of your, your advocacy work.
Julie Michelson: But where does someone. I'm going to start with, you know, I know, I mean, I had a client who literally was terrified that her doctors were going to fire her if she spoke up. Right. And that's, that was my reaction. I would laugh every [00:23:00] time she would say it, you know, but it is a common thought that people
Rhonda Nelson: have.
Rhonda Nelson: Why? And because they, I feel like because. The doctor has always been the smart one, right? Right. That's what we were taught, right? And so I feel like that's why people are a little timid to say, Nope, hang on. I read so and so. And then the next fear is you're going to think that they think, Oh, you got on the internet and you started reading because.
Rhonda Nelson: Yeah. We hear, you know. Yeah. Dr. Google. Yeah, exactly. It can be horrible, but that doesn't necessarily mean that's what you're doing, just because you say, I've done some research. Right. You know? Um, and yeah. I, I
Julie Michelson: feel like people are afraid to speak up. Yeah. Do you have a recommendation of like, well, where, where do you.
Julie Michelson: I mean, I love the, actually, I think it's brilliant, uh, to, to keep [00:24:00] a journal, um, so that you can reference, because if you have 15 minutes, you're trying to remember the name of that medication that that other doctor wants you to take and you can't remember it. Well, that's the end of that conversation.
Rhonda Nelson: Right.
Julie Michelson: So, yeah, I really, I really love that part. Um, I think that's really good advice. I, I joke, you know, I became a, a health coach 'cause I wish I had, I had wish I had one. Right. Yeah. So this is why we do what we do. Um, and so, you know, I, I appreciate, let's talk a little bit about that. How this shift from patient to advocate.
Rhonda Nelson: I, I just do, I could not be the only one that felt like this. Yeah. Or that was struggling with this. And I, you know, I just would get so tired of going to a physician, regardless of whether it was a physician that I was seeing for AERD, or whether it was a [00:25:00] physician I was seeing for something else. I didn't want to have to tell the same long drawn out story.
Rhonda Nelson: And then them look at me like a puppy dog cocking its head. Like, you know, I just, so I started to approach the visits more as, um, Facts. Like, here are the facts between the last time I was here and here as opposed to, well, I was this appeal and this. Exactly. Exactly. Um, because I, I, I feel like I got, first of all, I was able to cram a lot more info into a short period of time, but then there was no, like gray area.
Rhonda Nelson: I was simply stating the facts of. You know, this is the experience. This is the experience. This is what's happening. Um, and so I think that that's important for people to realize you, [00:26:00] your appointment is the time that you need to speak up. Um, you don't just, it's not the time to go. Yes, no, yes, no. It's, it's your appointment.
Rhonda Nelson: It's. You are giving your information.
Julie Michelson: I love that. And that's a big shift for, for a lot of people. And that is, it's so important. It really is what was coming up for me that this idea of I'm presenting the facts. Right. Um, as I find, especially women, although these days, probably more, more and more men as well, um, get that when there are unexplained things, right?
Julie Michelson: When, oh, but your labs look normal. Um, And physicians don't know what to do, or instead of saying, I don't know how to help you, but I will keep, I will walk this journey with you.
Rhonda Nelson: Right.
Julie Michelson: They do tend [00:27:00] to, a lot of times, you know, patients leave the doctor feeling like they didn't believe me or they think I'm crazy, or they offered me an antidepressant.
Julie Michelson: Or said, Oh, you're tired. Cause you have kids or, you know, what it trying to just explain away. And so I love that idea of let's take that whole judgment piece away. And you're just showing up like, these are the facts of, you know, my experience between the last appointment and now, or, you know, whenever, um,
Rhonda Nelson: but I, but I also feel like that it, it.
Rhonda Nelson: The chemistry has to be there too. So that's why I say interview first appointment, forget about it. It's an interview. Yeah. Interview and see if you should be right. Um, and, and I mean, I just switched, um, GPs as a matter of fact, I had my first appointment not too long ago. Um, I, I wanted to switch because.
Rhonda Nelson: this particular one takes into consideration both [00:28:00] Eastern and Western medicine. Things aren't, you know, the things that I do that are in my regimen aren't foreign to her. And so that was important. But I told her, right, the minute she walked in the door, I said, it was comfortable to begin with. So I knew it probably was going to be okay.
Rhonda Nelson: But I said, This is really an interview and I'm interviewing you. I know you're asking me a lot of questions,
Julie Michelson: but I'm interviewing you. I'm sitting here deciding am I going to come back.
Rhonda Nelson: I'm silently interviewing you. Absolutely.
Julie Michelson: Yeah, I love that. And you know what? I think for the most part, physicians appreciate that as well because We see it.
Julie Michelson: And again, it's a, it's a different lens being in a functional medicine practice. Um, but we have patients that aren't a good fit because it, because they're not willing to do the things. And so let's not waste each other's time, you [00:29:00] know, that this, you're not going to get results just by visiting with the doctor.
Julie Michelson: Like, that's not magic. If
Rhonda Nelson: you're not going to enact what. Yeah, they say and what you know works for you then then you're you're wasting your time and their time So back to the question, why did I go from patient to patient? You have
Julie Michelson: to
Rhonda Nelson: I Absolutely did and you know, I I feel like I have a platform and a pathway to use To for good where we can do some good.
Rhonda Nelson: Um, and also because AERD was not very well known back then. It is more known and diagnosed more now. Um, but I just knew that it, it, it just was what my heart told me to do. And I knew that that's what I needed to follow. Yep. Oh, I
Julie Michelson: get it. I totally [00:30:00] understand that for sure. Um, are you willing to share with us?
Julie Michelson: Are you comfortable to share with us some of these other things you do to feel your best?
Rhonda Nelson: Absolutely. Um, for, for my disease specifically, um, doing a high omega three, low omega six diet is very important for everybody. It should be for everybody, right? But. That's, that's neither here nor there. Um, Supplements, you know, I take a lot of supplements.
Rhonda Nelson: Now, I am going to say this, I, I was on American, uh, the American Lung Association podcast last week and, and when I talk about supplements, I, the very first thing that I want to say to listeners is this, I happen to believe supplements are very beneficial for us. However, you must do your [00:31:00] research and you must discuss with your physician the supplements that you are researching and that you feel will benefit you because they don't always play well with medications that you're on.
Rhonda Nelson: And so you can really hurt and do more harm than good if you don't heed to that advice, first and foremost. But I am a very big Supporter of supplements because I think our diets are just as such That we don't get the things that we need. Um, I could go, I could go on and on about that. I know, we could have probably a whole conversation.
Rhonda Nelson: We could talk a day about that. Yeah,
Julie Michelson: and I'll add to do your research, talk to your doctor. And, and when possible though, you know, targeted supplements. So, not that you're never hearing about something and, and discussing and bringing it in. But people ask me all the time, well what's one supplement everyone should take?
Julie Michelson: Now. For the most [00:32:00] part, I could say a really good omega 3, but I have met the very rare occasional person who has beautiful omega 3s from diet. It's, it's rare, but I say, you know, like Do do your labs and find out what you need. Yes. Um, and, and I like that. Yeah, they did. They don't all play well together.
Rhonda Nelson: And the other thing to check your resources where you get your supplements. Yes. The quality. And yes, they can be expensive, but you can have, you can take a pure expensive supplement and reap the benefits or you can get a supplement that is subpar and cause more harm than is good. So absolutely that I, I'm very, like, I'm very big on that.
Rhonda Nelson: And then the other things that I do, [00:33:00] you know, just exercise and, and I, you know, I have my own routine, but what I say to people that maybe have never exercised in their life. Movement is important. We must keep our bodies moving. And so find out what that looks like for you. Is it a walk every day? Is it you, you know, maybe you have a desk job and maybe you just get up every 30 minutes and you do a loop at your office or go up and down the stairs in the stairwell or is it a, is it a workout routine in your home?
Rhonda Nelson: Is it yoga? Whatever it is. And people may try. Tons of things before they find the one thing or two things that they like to do will keep them involved and keep their, um, attention to doing that particular exercise. So there's nothing wrong with just [00:34:00] because someone doesn't go to the gym for an hour a day doesn't mean they're not getting the exercise if they're doing a walk every morning before work or in the afternoon after work or whatever they're doing.
Rhonda Nelson: But movement is key. We must move our bodies. Um, so I, I'm really big on that. I'm really big on chiropractic care. I just feel like for me specifically, chiropractic care, if everything is in alignment, it seems all of my systems work a lot better. Um, yeah. I do red light therapy. I do acupuncture. I also have an infrared sauna at home.
Rhonda Nelson: I do cold plunges. Thanks. I we could hang out. I do a lot. Um, but at the end of the day, if, if all of that makes me feel better and gives me the energy, I need to do the things I need. There's no harm done. And I, and I don't, I always say not everyone. [00:35:00] Of those things is going to be right for someone. Oh, my husband, you know, like acupuncture and cupping.
Rhonda Nelson: I absolutely cannot wait for my weekly appointment for that. My husband can't stand it. He's just like, it's, it's not that it doesn't feel like it's doing anything for me. It's just not for me. It's not fair enough, right? Fair enough. So he finds the thing that is. And I,
Julie Michelson: I knew, I, I, I pro, I know I promised you I wouldn't keep you too, too long or go down too many rabbit holes.
Julie Michelson: I know, but it's
Rhonda Nelson: such a good conversation, right? But you
Julie Michelson: mentioned your husband, so I, I want to touch on, because we could do a whole episode on, on being a supportive partner. But let's talk about that because I feel like since you talk about it, it was an important part of your journey. And, and some, plenty of my listeners are not the ones.
Julie Michelson: with autoimmunity, right? It's a, it's a loved one or a family member. Um, so [00:36:00] just, can we just touch on that a little bit? Yeah.
Rhonda Nelson: I will say I, I, I, I truly believe that, um, a chronic illness can really test a relationship. Um, it requires love. It requires understanding. It requires grace, and it requires patience on both parts.
Rhonda Nelson: The caregiver side and the patient side, right? Um, what I've learned over the years is that It's pure agony, or was pure agony, for my husband to see me having a flare or an attack. Um, because, especially the ones that sent me to the ER and, you know, we're, we're, we're, I'm turning blue and hoping that we can, it's scary as hell.
Rhonda Nelson: And, and so it was, Um, you know, it's it's hard. It's hard on the [00:37:00] caregiver. The other thing that I, you know, I feel like is important is to realize that as exhausted as we are as patients. The caregiver is exhausted caregiving, whether that's mental caregiving or physically caregiving. And so we need to be aware of that and, and I just would know sometimes I would snap, like when I would be before I was really medically maintained, right?
Rhonda Nelson: Mm-Hmm, . This, this doesn't so much apply now because I rarely have an attack. I, I, you know, I was exhausted, I was drained and I would snap. And I would get frustrated because maybe he wasn't putting the soup in the bowl that I, that I would, that I would put it in. Right? So if you step back and you go, wait a minute, this person is giving all that they can to help me.
Rhonda Nelson: Yes. I need to give some [00:38:00] in return to help them to be able to help me. And so I feel like that's a, I feel like that's a really big thing. And I think the communication too,
Julie Michelson: so, so many of us wait too long to share. This is, these are gems from my fifties. Um, you know, uh, through, through the biggest health challenges and in my journey, I was a single mom, mom.
Julie Michelson: And so I hadn't experienced the kind of relationship where I had a truly supportive partner anyway, but I had to learn to allow someone to take care of me. And I had to learn that, um, you know, no, but again, back to only, we know what's going on inside our body, unless we're communicating. And so you might be struck as a little different when, you know, you're turning blue, then it becomes [00:39:00] clear.
Julie Michelson: Right. There's a problem. Yeah. But for, you know, for especially even the average listener, you know, if they're at the beginning of a flare or they're flaring and, and we try to just compensate and push through and do the things. And, and so, you know, you can't expect any partner. or loved one to be able to support you if you, if you aren't willing to, to be honest about how you're
Rhonda Nelson: feeling.
Rhonda Nelson: That's true. And, and I want to add another piece because this, for a long time, this was a problem, um, for me. And, um, because with my disease, your rheumatoid arthritis, diseases of that nature, where on the outside, we look perfectly healthy, right? Look fine. And I can't tell you how many times. That I've, um, had to cancel things with friends.
Rhonda Nelson: with family [00:40:00] and they don't understand. So it's a two part thing. One, a caregiver could be in a certain situations, a friend or a family member, not just a spouse or significant other. So that communication, you have to be honest with them because they can't see outwardly that there's anything wrong.
Julie Michelson: Yeah.
Rhonda Nelson: Right. And so communication is, and then I think that, um, Being honest with them, especially with your circle of friends and the outer parts of your family. Those that live with you will pretty much know what's going on day to day. It's as hard as it is to be honest because we don't want to be judged and feel like we're different or that people are judging us because we have an illness and just sometimes just saying I have a chronic incurable illness is hard for people to say.
Rhonda Nelson: Right. So because they, [00:41:00] maybe they don't want to admit it in the first place or they're struggling with what that means to them. So being honest with your friends and your family and even your employer, um, all of these relationships goes a long way in how people can help you. Sure. And
Julie Michelson: because the the alternative, you know, thinking about friends, because most of us with any kind of chronic illness, you know, at some point, life gets smaller, because we don't have the energy we are, you know, we're, and and so You, even though we often don't want to share, you know, the, the personal medical things going on.
Julie Michelson: And it doesn't mean you need to, you know, have a three hour conversation, but eventually either you're the friend who flakes out and nobody knows why, right. You're unreliable. You're, um, or you can just be [00:42:00] honest and then people understand and they get to love you. Like exactly.
Rhonda Nelson: Yeah. And it, it, it, and it, it goes.
Rhonda Nelson: As hard as maybe being honest and admitting that you have this chronic illness, it goes a long way in helping them to understand who you are. So therefore you're not seeing one that always flakes out. Right. You're seeing as, oh gosh, she's struggling with a flare right now. Yeah. But she'll be back. Right.
Rhonda Nelson: Yeah.
Julie Michelson: Yeah. That's important. Well, on a personal note, I want to just acknowledge the work that you do with the Asthma and Allergy Network. Um, my Really entry into any kind of chronic anything was as a young mom before even before, um, definitely before diagnosis. I probably had symptoms, but, but, um, two of my three Children have life threatening food allergies.
Julie Michelson: Um, [00:43:00] and, and so Asthma and Allergy Network is, is an amazing organization, um, and, and so I just wanted to honor the, the work that you do with them. Thank you. Well, because I couldn't be
Rhonda Nelson: more proud to be involved with an organization like them because the work that they do, not only just on the education side, but on the legislative side as well.
Rhonda Nelson: Yeah. Um, yeah. You know, and, and especially listen where food allergies come in. That's a, that's a whole nother thing. We could have a whole nother long conversation about that, but it is something that is real. It is life threatening and it is the awareness needs to be
Julie Michelson: there. Absolutely. As a, as a mom, you know, with young kiddos at the time, they're adults now, but scary, you know, just.
Julie Michelson: scary. Um, and so I just, that was a support I found early on, you know, like you said, not [00:44:00] just education and advocacy, but also, um, resources. I remember as a young mom, you know, nobody, there were no food allergy cookbooks back then. And, and, um, and so I just wanted to acknowledge that, that, that, you know, that was when I.
Julie Michelson: had first read your bio, I was like, Oh, I want to talk to her.
Rhonda Nelson: Thank you. I, you know, and, and I, and I want to say this and it's, it's not just food allergies or, or, or asthma or anything like that because those are I always struggle when people go, Oh, it's just food allergies or it's just asthma. Yeah, it is not, there is no disease.
Rhonda Nelson: That is just whatever it, the diseases, right. And food allergies, asthma, so many of these things that we. As a society typically put just in front of [00:45:00] are absolutely life threatening serious diseases. And I think that's a point that I will never stop making for as long as I live, because it really annoys me to hear, Oh, it's just food allergies.
Rhonda Nelson: Right. Just
Julie Michelson: anything.
Rhonda Nelson: Just anything. Exactly.
Julie Michelson: Yeah, which is a, I think also a beautiful thing for all of us. to remember for others as well, right? Like it's, it's, we, it's not for any of us to say, what is just fill in the blank. Um, and, and all of these, all of the chronic things, whether it's autoimmunity, asthma, Serious allergies.
Julie Michelson: Um, there's a, there's a fear component, you know, there's a, a scariness involved, whether it's realistic or not. Um, obviously with anaphylaxis and asthma, it is realistic. Um, I [00:46:00] lived in fear for a long time because I didn't think I was going to be alive to see my kids grow right now. And so we just, we can all take a step back and, and not judge anybody's.
Julie Michelson: You know, medical, medical issues, struggles,
Rhonda Nelson: exactly. And I just, you know, I really just say, if we just open our hearts and our heads a little bit more to, you know, just listening. And like you say, we don't have to share four hours worth of medical history. Nobody,
Julie Michelson: nobody really wants us to,
Rhonda Nelson: exactly, but just.
Rhonda Nelson: Yeah, something to let people know what you're struggling with if we can open our heads and our hearts to that and have a little grace and understanding with everybody. I think we would find out that there's more people out there struggling with things that we don't even know about because they don't want to talk about them.
Julie Michelson: Yeah, I say that to my staff all the time with, you know, we have an amazing patient [00:47:00] population at the clinic. Um, and, and, you know, they're positive and they're, but, but, you know, sometimes people are, especially as new patients, you know, they're, they've been struggling, they haven't been heard, they're scared, whatever, fill in the blank.
Julie Michelson: And I, I always remind, you know, like we, you don't know. What's going on? Yeah. Always give that grace. And we just, everybody's dealing with something. Right. For real. Yeah. Yeah. So amazing. Rhonda, we're at the point of the conversation where listeners are leaning in because they know I'm going to ask you for one step that they can take starting today to improve their health.
Julie Michelson: And it could be
Rhonda Nelson: Well, one step to improve your health, I would have to say, listen to your body, don't discount anything as too small. And then my, [00:48:00] an addition to that tip is start your medical journal today. Even if you don't have anything that's really worrisome, you know, just, just pay attention to what your body is saying and doing and document it.
Rhonda Nelson: And listen, I used to think I could, could remember everything in today's busy world. Yeah. We can't, you, you, you, you just can't remember, especially if you're not seeing a physician for six months or eight months or a year, you're not going to remember, so I feel like for those of us who deal with chronic illnesses, one of the biggest and best things you can do for yourself is to keep a medical journal of your, your symptoms and both positive and the things that aren't going as, as well as you'd like them to go.
Julie Michelson: Yeah, I love, and I love that you added that [00:49:00] because sometimes we forget to be intentional about connecting the dots to, we make a change and, and we do improve, but, and we're not paying close attention. So I love that, that it is, it's the positive, the negative, the changes. Um, brilliant, brilliant advice.
Julie Michelson: Thank you. Thanks so much. Where can listeners go to find out more about you for those that aren't going to check the show notes?
Rhonda Nelson: Very, they can find me at my website, Rhonda B. Nelson. com.
Julie Michelson: Love it. Rhonda, thank you so very much for sharing your wisdom, for educating us, um, and, and just for sharing your journey and inspiring everybody to become their own health advocate.
Rhonda Nelson: Thank you. It has really been a pleasure. And obviously it is a topic that I just love to talk about so much. And it's, it's been such a pleasure.
Julie Michelson: Thank you for everyone listening. Remember you can get those show notes and transcripts by [00:50:00] visiting inspiredliving. show. Hope you had a great time and enjoyed this episode as much as I did.
Julie Michelson: I'll see you next week.
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My Guest For This Episode
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Connect with Rhonda Nelson
Rhonda Nelson
Rhonda Nelson, renowned patient advocate, author, speaker and philanthropist is a beacon of resilience and strength. Her charitable work spans championing equitable access to affordable healthcare, supporting those diagnosed with AERD (Aspirin Exacerbated Respiratory Disease), serving as a voice in the foster care system and encouraging women to reinvent themselves in their different stages of life.
Rhonda serves on the Executive Board of Directors with the Asthma & Allergy Network, impacts legislation and speaks nationally, raising awareness for AERD. Having dealt with AERD (Aspirin Exacerbated Respiratory Disease) herself for more than twenty years, she has experienced many misdiagnoses, a near fatal struggle to find relief, a desperate search for answers and a constant journey to access proper support. Rhonda and her husband Wayne, of the Little River Band tirelessly devote their time and resources to helping others to navigate this challenging medical journey frequently associated
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