Rhonda Nelson Joins Dori DeCarlo on The Mompreneur Model

0:00 She is sure, she is sure, she is strong, she is true, is true, she is brave, she is she is you, she is you, is you, she is sure, she is true, she is strong. She is strong, she is true, is true, she is brave, bray she is she is you. Hello, everyone, Welcome to today's Word of Mom Radio. Here on the Word of Mom Media Network. I'm your host, Dori Di Carlo, and you know we are here week after week, show after show, breaking those myths that morepreneurs and business women, especially those of us building our businesses from home, that we're just dabbling in between bake sales and getting our nails done. We're not. We are smart, we are savvy, and we are sharing the wisdom of women in business and in life. And I'm looking forward to bringing today's guest into our show. Rondan Nelson, renowned patient advocate, all authors, 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, which is aspiring exacerbated respiratory disease, serving as a voice in the foster care system, and encouraging women to reinvent themselves in their different stages of life. Ronda serves on the executive board of directors with the Asthma and Allergy Network,

1:32 impacts legislation and speaks nationally raising awareness for AERD. Having dealt with it herself for more than twenty years, she has experienced many misdiagnoses, near fatal struggle to find relief, a desperate search for answers, and a constant journey to access proper support. Ronda and her husband Wayne of the Little River Band hirelessly devote their time and resources to helping others navigate this challenging medical journey frequently associated with severe respiratory disease. Ronda's a firm believer in empowering women to pursue their dreams they have for their lives, regardless of age, while finding strength and overcoming challenges. In her book, A Different Life, Ronda not only pulls back the curtain on celebrity look but also offers readers the chance to hear never before told stories, enjoy treasured family recipes and photos, while getting a taste of all the things pertaining to life on the road that I'm actually going to bring her back for her book because her philanthropic work and the work that she is doing impatient advocacy and everything is so important that we're going to devote this episode to that and we'll bring her back to the author's ally because A Different Life has got to be a really great book to share. So with all that being said, Rhonda, welcome to Word of moone Radio.

3:04 Thank you so much for having me. I appreciate it. It's all that's right, absolute pleasure. And you know, for people who don't since we're talking about aard, for people who do not know what that is, I would love for you to share that journey with that. Absolutely asper an exasperated respiratory disease. In the early days when I was first diagnosed, it was called Sampter's triad because it is a triad of three components. One is nasal polyps, one is asthma, and one is the sensitivity to aspirin and insets, or basically you're allergic to aspirinin insets. That's the component that makes this disease quite difficult to diagnose because people present with chronic nasal polyps, chronic sinus infections, chronic asthma, and so a lot of times they're just treated for those things. But when they are treated for just those components, they find that they're not getting better.

4:07 And it's typically because number one, they don't know their sensitive to aspirin or insets. But number two, those are two common medications that a majority of people will take at some point. You know, we've always been told to take an aspirin, a small baby aspirin when you get a certain age, for your heart cardiovascular issues or to prevent them, and we use insets for a myriad of things. Right, so diagnoses can be very tricky, and that's exactly what happened to me. It took me about two years to get diagnosed. It started out with what I thought was a cold, just continue to not get better, not get better.

4:51 If anything, I was getting worse. I had never had problems with seasonal allergies. I'd never had allergy as a kid. I'd never had asthma as a kid or a young adult, so these things when this started to just snowball, you know, I really didn't know what was going on. And kind of the telltale piece of the puzzle was I was constantly congested, constantly wheezing, my nasal passages were completely impacted with nasal polyps, and I would take tylenol PM to sleep, and within forty five minutes to an hour, I would go into what now I know was an asthmatic or an anaphylactic reaction to that, and so that began putting the puzzle together. So that was in two thousand. It took until two thousand and two to get a diagnosis.

5:48 It still wasn't a really well known or very often diagnosed disease, and so for me, it was multiple doctors before I actually got the diagnosed. Because I did, one physician did start me on allergy shots and that actually made me worse. So it was quite the journey in that period. There were times when, you know, random things would set the anaphylaxis off, like going into a hotel room and there would be mold in the room and I would start to breathe it and then that would just, I mean immediately trigger. So I had several near fatal experiences when I was out on the road with my husband.

6:31 You know, we were able to get to the hospital, but I was I was pretty darn close to my throat completely seizing up. And so that was really the beginning of knowing that this disease needed awareness. I knew there had to be other people out there that were dealing with this, but no way was talking about it also back then, And I know back then sounds like I would be talking about a long time ago. But in the medical world, medicines can change and come and go, and new medicine come about, and back then, which was twenty three twenty four years ago, now, there weren't a lot of great you know, you had to your medical team had to put together basically a cocktail of medications to keep it maintained. And what works for one or two doesn't work for all. That's the other kind of weird component of this is, you know, I'm in a lot of forums, I talk to a lot of people with this disease, and I hear a lot of stories, and everybody's just trying to their teams are trying to find what medications will keep them very well maintained. Because when you're not breathing at capacity, you have low energy, you have brain fog, you don't have the stamina to do all of the things that you need to do as a mom, as a business owner, as a wife, keeping up with your kids and all of that. Life is hard enough. You add on a breathing component that's bogging you down and it's tough. It's really tough. I am happy to say that now there are a few new medications their by logics, but they are really working

8:03 wonders for aer D patients and we're seeing a lot of success rate with those. They do come with side effects like other drugs, but then that's where you, as your own patient advocate, has to decide what is really right for your body and what medication works for you, and then you have to it's an absolute must. You have to advocate with your doctors and you have to get them to hear you. They don't just sit there and tell them the story and then they say this is what you know, this, this, and this. You have to advocate because they only see us for a very short amount of time each appointment, right, they don't know what goes on the other twenty four hours a day, seven days a week, three hundred sixty five days a year.

8:52 So it's very important that we as patients go in prepared to our visits to share, you know, what what has been going on at home, what maybe you've you've started on a new medication regimen, and what is happening? What are you seeing? Are there things that have popped up that aren't the norm for you? Those are all things that it's vitally important to share with your medical team. It's very interesting because I'm flashing back to my children's childhoods and thirty years ago. I was really fortunate that our pediatrician my oldest type of allergies, and my pediatrician knows me. I try to fight like with like. You know, it's not that I don't use antibiotics and things like that, but I feel it constantly takes stuff. You're kind of negating the immune system that we have. So he sent me to the health food store and he said, let's start with B pollen, he said, and then get local honey m hm, and take a teaspoon a day. Because at that point he was five, so he didn't have to worry about wars and things like that, because he said, you know, I can give you children's clarenon, but I know you, and you know what I don't know still catches in my throat. You know, he's thirty seven, and he takes his teaspoon sometimes allergies do not bother him and then other times, but that's what he'll do. Unfortunately his wife is the same way with that. But for so many moms, they don't realize all of the things.

10:25 You know, it could be their clothing, it could be pet it could be the silliest and simplest of things that are allergies, and they're trying to find the answers and it gets so frustrating because quite often doctors, you know, let's face it, they get their degree and then they're done. That's why I always go to physicians assistants rather than a doctor. I prefer a PA who every six months has to go back for quality assurance and this and that, and so I felt like they would always be more up to date in what you could do and everything else. So how can mom help themselves handling these allergies and stuff like that and not give up hope when it's so frustrating finding out what's triggering everything.

11:09 Yeah, you know, I also think one theory behind AERD. I was given just an enormous amount of antibiotics in a period of my life, and there is some consideration, if you will, that that is what led to I don't want to say it was the cause, but it contributed to the cause of me developing this disease. And so I've become really hyper aware of things like that because I think we live in a society where physicians, especially because they are under the gun to see as many patients as possible in a day, and so let's throw a medication that is really a band aid. It's not curing the cause. So I'm probably one of the unique people who sit with one leg on each side of the fence posts. I take a biologic right now because I have this disease, and I have to take that biologic to keep my quality of life at the level that I want to live at. Do I love putting that drug into my body. No, But everything that happened in my early years created this situation. But I go a step farther, and I am a really firm believer in a lot of modalities that help you in

12:41 a way that aren't a chemical compounded medication. Right, we don't classify AERD as an autoimmune disease, yet I believe as research goes along that we will probably see it under that umbrella of diseases. Let's face it, if you've got nagal holyps and you've got asthma. There's inflammation in your body, right, So I struggle with that too. But that's a whole nother story, whole nother soapbox. But having said that, I use a lot of non conventional modalities and therapies to keep me at the level that I want to be in as far as my quality of life. Yes, I know the drug is doing that, but I also feel like if I could wean off of that or at least space it out farther, I'm being proactive against my disease. Right, Infrared sauna, red light therapy, lymphatic drainage, cupping, drynealing, chiropractic care. Those are all things that I absolutely believe in.

13:50 And I think you were asking about moms and what goes on now. We also live in a society where things are not pure or not even as close to pure as they used to be, and so I struggle. I feel bad for the moms because we have so much forgive me crap in our foods, in the clothing that we wear, in the detergents that we use, in the household products that we use, and so you know, it's almost a full time job for someone to try to navigate that and figure out what can I do to keep my children healthy and safe? Right on top of being able to navigate it, then you have to be able to afford it because all of those products and things are expensive. The modalities and the treatments are not covered by insurance, and so it's just this awful snow globe situation where I just feel like people are in it and they're like, I have to get out of this and do something more proactive for my family or for myself. And it's tough. We live in a very tough society.

15:05 On that note, really think of what Ron is talking about. We're gonna take a quick break and say thank you to our sponsors and we'll be back here in just a moment. On Word of Mom Radio. She is brave, she is bold, she is you, and we want to tell your story. Are you ready to share your journey with us on Word of Mom Radio. Go to wordomomradio dot com and register as a guest. We want to tell your story because when you win, we all win. In twenty seventeen, Unsilenced Voices was formed to help survivors of domestic abuse and gender based violence worldwide. The organization currently serves Sierra Leone, Rwanda, Ghana, and the USA. In twenty twenty two, Unsilenced Voices gifted over thirty three one thousand dollars to survivors in the USA and in Sire Leone.

16:04 There are over twenty six young girls who have been rescued from sex trafficking and domestic abuse and now going through vocational training school in order to better their lives. We need your help. Donations are critical in order for us to continue our work. We also need volunteers to help with research and development. Please visit Unsilenced Voices dot org for more information. And we're back here on Word of Mom Radio. We are talking with Ronda Nelson just about the allergy journey you are preaching to the choir. It catches in my throw.

16:44 Thirty seven years ago, when my son was born, I washed cloth diapers because how am I supposed to teach my kids about not leaving a huge carbon footprint? And I wasn't going to watch their diapers in all temperature. So I actually started using Shackley products, which were completely organic. My kids, at eighteen months old, had their own spray bottles because you know, you were so good. Mommy's help me clean the bathroom, and they could drink anything under the sink and they might wind up with diarrhea. And it's funny because my niece, whose daughters are going to be eight this month, we do a family party every year, and there she is with all of her organics and whatnot.

17:24 Because I was a trader Joe's shopper and in all these shopper I don't know how people can afford to eat and not shop at these stores because I've always tried to eat as organic as I can and single foods. And here she was, and I told her how proud I was, and she goes, you know what, Auntditi, you set the bar. She said, you were doing this decades before people were thinking about it. And my daughter one time had a cough and said to her, your dad's like, you need to take you to CBS to get you some triminic. And she just put her little hands on her hip. She was four, have taught you nothing? Well, look, missus, Green's alcohol for the apothecary. He'll tell me what we need. Oh okay, honey, you know there was six foot three.

18:05 There was you know, four inches tall getting in the cart and have mommy taught nothing? And again, now my kids are adults and all three of them have followed that same path. Yeah, sadly, you know, moms go to a doctor, when anybody goes to the doctor, if the doctor's not writing them a prescription, the doctor not doing their job. And that's really what we come down to. We don't want to talk to the doctor about what al turn it is rather than putting me on this what can I do? Naturally? I got lucky my patrician respected that I wanted to do this. So if my kids had stripped, give me that antibiotic. That's why antibiotics work.

18:50 But if you're constantly bombarding your system with things, and I don't think people, and again it's because you're looking for ways to remedy something, especially as a mom for your kids, and so you'll try things. But how do you help moms navigate that and look at those natural or alternatives that are actually going to build your immune system? Right? Well? And you know, sadly, we live in a society right now that is pretty volatile when we start to talk about this, right, so, I think I'm going to just guestimate.

19:32 I have a lot of friends that have daughters that are young moms now and we have conversations. I think moms are starting to realize that what the doctor tells them in the prescription they give them is not the wherewith all and be with all in the end all. They're starting to question number one, which I think is great. They're starting to look at things and be more open to a more or organic, if you will, way of life, a more clean way of life, despite all the crap that is floating around us. But again, here, here's here's the problem, and here's I don't know the answer to this, but I won't stop talking about it. A big problem.

20:17 Like you mentioned, Shaly, we should not have to join some kind of multi level marketing, be a part of something like that in order to get products of that quality. Right, But for the most part, that's kind of what you got to do. You don't go to you don't go to Walmart and see those kinds of products on the shelves. You actually can There's a company called eCos eCos Okay, you can get it at Walmart, you can get it at most Yes, I mean we're getting better. Yeah, and you know, what believe it or not, they're actually less expensive.

20:58 And the laundry detergent is phenomenal. And because it is plant based, it will get out any stain. Yes, it's enzyme based. It'll actually make your clothes healthier. Your cotton clothes don't lose their oxygen, and they are they're actually less expensive than buying the chemical and juice wore And again we just need to know it. It's a it's a woman owned company. It's a fabulous company. I've been using them for years. And there I will say, I do think overall we're getting better. Even I use the example Walmart, and I was sitting here thinking, you know, you used to go to Walmart and you couldn't find you might find a handful of let's say, gluten free products right now. If the Walmart iss Aer center and they have food, I mean in the one that is by me, they have a whole section. So I think because people are speaking up, voice is are being heard. But we have a long way to go. But I'll also tell you too that it depends on the demographic market of where those stores are located, of what's going to be in those stores, And that to me is just disgraceful, I just because it insinuates that only certain demographics want or will buy these particular kind of products, and I do not agree

22:29 with that philosophy at all. So again that then goes to another point, people that are in a situation where they have to have assistance when they're purchasing foods and things like that. This is getting better, I know, but it has a long way to go as well. The healthier choices aren't covered with these cards and things like that, and so crap in gives your body crap, right, And so that creates this just vicious cycle where we're we're forcing certain demographics to eat things and use things that aren't healthy. So back to what we originally started talking about, how do these moms navigate this? And I really just think it's keeping this story alive, not letting up on being persistent about having these choices available for everybody. And then I also think it's a little bit of each person being proactive for themselves or their family, because you have to just say no, I'm not going to be given an antibiotic every time I sniffle, right, And that's the thing. In the old days, it is true that people went to the doctor. The doctor said, you have this, you take this medicine. And they believed that what the doctaid was the Holy Word, and so they did what

24:00 the doctor said. But we know differently now, and we know that we can heal with foods and with natural supplements and herbs and things like that, and so we have to those of us that do that, we have to keep that story out there. A thousand percent. It's so important because the reality is every medication out there started organically. It really did. It's so funny. I do a lot of traveling. I'm on the road a lot. We were talking about that before we started. I eat fresh blue cheese all the time. To me, that is nature's and a silling yeah bad.

24:41 And I really do get Trader Joe's. I get this wonderful Danish blue cheese. Take a little slice, put on a cracker every day. That's what I do to ward off whatever kind of germs and things like that. I have my zinc drops. If I'm in a really crowded place for a while. When I'm done, I pop a zinc drop. Our bodies are designed to fight things, but countermand them often and I do think It is really important. And I think that we are starting to realize that we ourselves can take control, that we can hear what the doctor says and okay, great, and then you know what, do yourself a favor. Go to the helping store, talk to the aboutHe carry. Here's what my doctor wants me to take. What is the alternative? What can I do?

25:31 And you know what? There are certain things. Take that antibiotic. You have strep throat, you have some kind of a strep infection, Take that antibiotic from beginning to do not miss a dose. Yes, everythings you can do stuff that is going to fight it and strengthen your body. So I think it is just so important. And I want to talk to you about the philanthropic work you're doing and how moms can help round it because you're doing so much to raise awareness and using the celebrity life that you have with your husband to make people listen. And I think that it is really important. What is the sense of being somebody that people look up to and not doing what we're doing? So I love it.

26:15 Talk to us again, and that's that's really what Wayne and I that's where our heart lies. We've been blessed with this path that is well known, and people love the music, and music resonates with people. Right the two universal languages of the world are music and food. And so because the music resonates and that we do have this path, we want to use that to raise awareness, not just for aer D. I mean we do all kinds of things. We did just back in February and Louisiana, a friend of mine started something called Philip's Cottage and it's a home where girls with their children can live once they graduate from a program in Louisiana that's not unlike the Teen Challenge program. And so we went and did a it's called Songs and Stories from the Road.

27:10 We had a few guys from the band, we had myself. I would tell stories, they would do the songs, and we did a fundraiser. We do things like that for all kinds of organizations because truly we are blessed with this life. But then for us we want more from it, and that more that we get is to be able to give back, and so it's just truly a blessing. I would probably have us doing Songs and Stories from the Road every week if we could fit into the schedule. But the touring schedule, especially because this year's the fiftieth anniversary of the band in Wayne's been in the band forty five years, it's the touring schedule is grueling, and so we don't have as much a free space to do these things. But that doesn't mean that my work behind the scene stops. I do probably five to seven podcasts like this a month where I'm just constantly talking about this because just using the voice, telling the story, sharing my journey about being misdiagnosed and this disease. That was probably the reason I have it. One of the components is over use of antibiotics, sharing this and getting this out there. If I help one person that here's your podcast to me, that's huge because you know what that person's gonna do. They're going to tell another person and they're going to tell another person. We're not going to change our healthcare system in a day, a week,

28:41 a month, a year. It's going to be a long journey, but we have to start somewhere. And so, like I said, it's the rolling ball momentum. One person hears something, they share it with another, they share it with another and so that's really where my passion lies is just to share and to give back and to let people know there are other alternatives than just here take this pill, you know, and it's interesting. And the example I'm gonna give is interesting too, because actually I'm allergic to aspirin. But if look at alternatives, like white birch is an alternative, that's nature's aspirin. So pretty much the basics that we have in chemical form, you can find our natural forms of it as well, And so why wouldn't we utilize those?

29:30 I mean, the simple answer to that is big pharma. I don't even want to go there. Oh, let's go there. The other thing. Pharmacies fund medical schools. Absolutely. Doctors get rewarded for giving you antibiotics. They don't get rewarded for telling you to go to the apothecary. Believe that my pediatrician could cause a lot of crut because I was one of the few families that wanted the alternatives. Yeah, and he was that you talked about it earlier. They don't know what's going on in your life. He would ask me, I'd be in for one kid, he knew what the other. He would sit there and find out everything going on. Yeh, family and stuff, and they of course gave him grief for it because they want him to turn over like this. Do you know what? This is what made him such a great doctor. He actually knew what was happening. So okay, let's look at why they're sick right now and what's going on and things like that. It is so important. So I think the work that you are doing is marvelous. Please keep it up and let me know how I can help. And as we're looking, Ronda, let everybody know how they can reach out to you.

30:42 Sure you can find me on my website at Rondabnelson dot com and also on Facebook or Instagram Ronda B. Nelson. And I love people sending me story. I love to hear good things. I love to if people are struggling finding resources, I love to help people with that. So please reach out to me. I just want to say to everybody out there, go with what you believe in your heart and your head, and don't give up. If you have a child and or you're a woman and you're struggling to find a diagnosis, don't stop digging. One doctor may not give it to you. You may have to go from this doctor to this doctor to this doctor.

31:26 I was in a group of people last night and one of them says, my husband used to tell me this one thing because I had a knee problem and I wasn't getting any answers. And he looked at me one day and he said, just keep going until you find the guy. And that's true. Just keep going until you find the medical team that aligns with the way you want to deal with your body and your children's body. And that's the biggest and best advice I can give. And that is great advice. We're gonna have Ronda back for the author's alley. I want to reader book a Different Life. I want to hear these never before told stories and stuff and get some family recipes. You all know me. I love to read. So we will definitely have you background it. And I thank you for sharing this journey with us. No thank you, you know AERD and letting people know what that is. But just we are our best advocates, and as moms, fight for your kids.

32:25 Don't just go along with something because the doctor said so, it's okay to tell the doctor I'd like a different alternative. And if they're not willing to give it to you, your health food store. Can they have an apothecary on staff that can literally tell you, like you were saying, with white birch and things like that, there are the natural alternatives that are going to give your bodies the ability and the strength to fight off other things. All it does is build up our bodies. We are taking natural things like allergies. You have seasonal allergies. A teaspoon of local honey within one hundred mile radius of where you are. That local honey is what you're allergic to.

33:13 Those bees are going through all the pollens and that's it. A teaspoon a day and you won't have allergies. You will feel great. And you know what it tasted. That's right, it does. Is right? That spoonful of sugar, you know. Yeah, but that's it's natural. That's your sweet snack for the day, right exactly. Yeah, honey has so many medicinal properties. People, you have no idea. There's so much good stuff out there. Your stomach's bothering you eat some partsleep, It will absolutely stomach. You know, use ginger ginger. I travel with ginger, Yes, the little candied gingers. I keep them in my bag and that way if my stomach.

33:59 I'm eating something that doesn't have a little ginger. So many things out there, all right, that's why we gotta have you back. We're gonna have you back, Ronda and I Okay, all of Ronda's links will be live. I encourage you to find out there are so many great alternatives out there. So I thank you so much, Thank you time to come today. Thanks so much. I appreciate it. It's been my absolute pleasure. And for all of you tuning in, thanks so much for being here. We're gonna close out with our fabulous theme song from Smith's Sisters and the Sunday Drivers. So till next time. This is Dori di Carlo saying, go out and create a marvelous you. Bye for now.

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