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She is sure, she is sure, she is strong, she
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is true, is true, she is brave, she is she
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is you, she is you, is you, she is sure,
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she is true, she is strong. She is strong, she
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is true, is true, she is brave, bray she is
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she is you.
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Hello, everyone, Welcome to today's Word of Mom Radio. Here
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on the Word of Mom Media Network. I'm your host,
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Dori Di Carlo, and you know we are here week
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after week, show after show, breaking those myths that morepreneurs
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and business women, especially those of us building our businesses
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from home, that we're just dabbling in between bake sales
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and getting our nails done. We're not. We are smart,
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we are savvy, and we are sharing the wisdom of
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women in business and in life. And I'm looking forward
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to bringing today's guest into our show. Rondan Nelson, renowned
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patient advocate, all authors, speaker, and philanthropist, is a beacon
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of resilience and strength. Her charitable work spans championing equitable
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access to affordable healthcare, supporting those diagnosed with AERD, which
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is aspiring exacerbated respiratory disease, serving as a voice in
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the foster care system, and encouraging women to reinvent themselves
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in their different stages of life. Ronda serves on the
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executive board of directors with the Asthma and Allergy Network,
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impacts legislation and speaks nationally raising awareness for AERD. Having
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dealt with it herself for more than twenty years, she
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has experienced many misdiagnoses, near fatal struggle to find relief,
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a desperate search for answers, and a constant journey to
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access proper support. Ronda and her husband Wayne of the
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Little River Band hirelessly devote their time and resources to
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helping others navigate this challenging medical journey frequently associated with
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severe respiratory disease. Ronda's a firm believer in empowering women
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to pursue their dreams they have for their lives, regardless
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of age, while finding strength and overcoming challenges. In her book,
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A Different Life, Ronda not only pulls back the curtain
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on celebrity look but also offers readers the chance to
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hear never before told stories, enjoy treasured family recipes and photos,
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while getting a taste of all the things pertaining to
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life on the road that I'm actually going to bring
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her back for her book because her philanthropic work and
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the work that she is doing impatient advocacy and everything
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is so important that we're going to devote this episode
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to that and we'll bring her back to the author's
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ally because A Different Life has got to be a
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really great book to share. So with all that being said, Rhonda,
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welcome to Word of moone Radio.
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Thank you so much for having me. I appreciate it.
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It's all that's right, absolute pleasure. And you know, for
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people who don't since we're talking about aard, for people
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who do not know what that is, I would love
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for you to share that journey with that.
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Absolutely asper an exasperated respiratory disease. In the early days
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when I was first diagnosed, it was called Sampter's triad
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because it is a triad of three components. One is
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nasal polyps, one is asthma, and one is the sensitivity
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to aspirin and insets, or basically you're allergic to aspirinin insets.
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That's the component that makes this disease quite difficult to
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diagnose because people present with chronic nasal polyps, chronic sinus infections,
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chronic asthma, and so a lot of times they're just
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treated for those things. But when they are treated for
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just those components, they find that they're not getting better.
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And it's typically because number one, they don't know their
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sensitive to aspirin or insets. But number two, those are
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two common medications that a majority of people will take
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at some point. You know, we've always been told to
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take an aspirin, a small baby aspirin when you get
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a certain age, for your heart cardiovascular issues or to
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prevent them, and we use insets for a myriad of things. Right,
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so diagnoses can be very tricky, and that's exactly what
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happened to me. It took me about two years to
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get diagnosed. It started out with what I thought was
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a cold, just continue to not get better, not get better.
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If anything, I was getting worse. I had never had
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problems with seasonal allergies. I'd never had allergy as a kid.
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I'd never had asthma as a kid or a young adult,
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so these things when this started to just snowball, you know,
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I really didn't know what was going on. And kind
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of the telltale piece of the puzzle was I was
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constantly congested, constantly wheezing, my nasal passages were completely impacted
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with nasal polyps, and I would take tylenol PM to sleep,
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and within forty five minutes to an hour, I would
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go into what now I know was an asthmatic or
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an anaphylactic reaction to that, and so that began putting
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the puzzle together. So that was in two thousand. It
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took until two thousand and two to get a diagnosis.
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It still wasn't a really well known or very often
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diagnosed disease, and so for me, it was multiple doctors
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before I actually got the diagnosed. Because I did, one
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physician did start me on allergy shots and that actually
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made me worse. So it was quite the journey in
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that period. There were times when, you know, random things
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would set the anaphylaxis off, like going into a hotel
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room and there would be mold in the room and
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I would start to breathe it and then that would just,
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I mean immediately trigger. So I had several near fatal
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experiences when I was out on the road with my husband.
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You know, we were able to get to the hospital,
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but I was I was pretty darn close to my
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throat completely seizing up. And so that was really the
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beginning of knowing that this disease needed awareness. I knew
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there had to be other people out there that were
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dealing with this, but no way was talking about it
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also back then, And I know back then sounds like
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I would be talking about a long time ago. But
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in the medical world, medicines can change and come and go,
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and new medicine come about, and back then, which was
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twenty three twenty four years ago, now, there weren't a
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lot of great you know, you had to your medical
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team had to put together basically a cocktail of medications
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to keep it maintained. And what works for one or
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two doesn't work for all. That's the other kind of
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weird component of this is, you know, I'm in a
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lot of forums, I talk to a lot of people
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with this disease, and I hear a lot of stories,
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and everybody's just trying to their teams are trying to
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find what medications will keep them very well maintained. Because
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when you're not breathing at capacity, you have low energy,
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you have brain fog, you don't have the stamina to
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do all of the things that you need to do
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as a mom, as a business owner, as a wife,
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keeping up with your kids and all of that. Life
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is hard enough. You add on a breathing component that's
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bogging you down and it's tough. It's really tough. I
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am happy to say that now there are a few
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new medications their by logics, but they are really working
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wonders for aer D patients and we're seeing a lot
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of success rate with those. They do come with side
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effects like other drugs, but then that's where you, as
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your own patient advocate, has to decide what is really
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right for your body and what medication works for you,
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and then you have to it's an absolute must. You
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have to advocate with your doctors and you have to
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get them to hear you. They don't just sit there
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and tell them the story and then they say this
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is what you know, this, this, and this. You have
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to advocate because they only see us for a very
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short amount of time each appointment, right, they don't know
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what goes on the other twenty four hours a day,
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seven days a week, three hundred sixty five days a year.
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So it's very important that we as patients go in
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prepared to our visits to share, you know, what what
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has been going on at home, what maybe you've you've
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started on a new medication regimen, and what is happening?
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What are you seeing? Are there things that have popped
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up that aren't the norm for you? Those are all
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things that it's vitally important to share with your medical team.
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It's very interesting because I'm flashing back to my children's
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childhoods and thirty years ago. I was really fortunate that
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our pediatrician my oldest type of allergies, and my pediatrician
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knows me. I try to fight like with like. You know,
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it's not that I don't use antibiotics and things like that,
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but I feel it constantly takes stuff. You're kind of
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negating the immune system that we have. So he sent
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me to the health food store and he said, let's
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start with B pollen, he said, and then get local
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honey m hm, and take a teaspoon a day. Because
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at that point he was five, so he didn't have
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to worry about wars and things like that, because he said,
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you know, I can give you children's clarenon, but I
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know you, and you know what I don't know still
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catches in my throat. You know, he's thirty seven, and
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he takes his teaspoon sometimes allergies do not bother him
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and then other times, but that's what he'll do. Unfortunately
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his wife is the same way with that. But for
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so many moms, they don't realize all of the things.
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You know, it could be their clothing, it could be
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pet it could be the silliest and simplest of things
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that are allergies, and they're trying to find the answers
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and it gets so frustrating because quite often doctors, you know,
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let's face it, they get their degree and then they're done.
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That's why I always go to physicians assistants rather than
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a doctor. I prefer a PA who every six months
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has to go back for quality assurance and this and that,
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and so I felt like they would always be more
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up to date in what you could do and everything else.
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So how can mom help themselves handling these allergies and
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stuff like that and not give up hope when it's
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so frustrating finding out what's triggering everything.
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Yeah, you know, I also think one theory behind AERD.
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I was given just an enormous amount of antibiotics in
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a period of my life, and there is some consideration,
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if you will, that that is what led to I
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don't want to say it was the cause, but it
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contributed to the cause of me developing this disease. And
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so I've become really hyper aware of things like that
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because I think we live in a society where physicians,
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especially because they are under the gun to see as
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many patients as possible in a day, and so let's
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throw a medication that is really a band aid. It's
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not curing the cause. So I'm probably one of the
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unique people who sit with one leg on each side
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of the fence posts. I take a biologic right now
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because I have this disease, and I have to take
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that biologic to keep my quality of life at the
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level that I want to live at. Do I love
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putting that drug into my body. No, But everything that
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happened in my early years created this situation. But I
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go a step farther, and I am a really firm
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believer in a lot of modalities that help you in
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a way that aren't a chemical compounded medication. Right, we
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don't classify AERD as an autoimmune disease, yet I believe
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as research goes along that we will probably see it
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under that umbrella of diseases. Let's face it, if you've
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got nagal holyps and you've got asthma. There's inflammation in
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your body, right, So I struggle with that too. But
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that's a whole nother story, whole nother soapbox. But having
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said that, I use a lot of non conventional modalities
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and therapies to keep me at the level that I
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want to be in as far as my quality of life. Yes,
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I know the drug is doing that, but I also
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feel like if I could wean off of that or
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at least space it out farther, I'm being proactive against
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my disease. Right, Infrared sauna, red light therapy, lymphatic drainage, cupping, drynealing,
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chiropractic care. Those are all things that I absolutely believe in.
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And I think you were asking about moms and what
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goes on now. We also live in a society where
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things are not pure or not even as close to
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pure as they used to be, and so I struggle.
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I feel bad for the moms because we have so
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much forgive me crap in our foods, in the clothing
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that we wear, in the detergents that we use, in
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the household products that we use, and so you know,
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it's almost a full time job for someone to try
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to navigate that and figure out what can I do
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to keep my children healthy and safe? Right on top
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of being able to navigate it, then you have to
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be able to afford it because all of those products
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and things are expensive. The modalities and the treatments are
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not covered by insurance, and so it's just this awful
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snow globe situation where I just feel like people are
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in it and they're like, I have to get out
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of this and do something more proactive for my family
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or for myself. And it's tough. We live in a
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very tough society.
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On that note, really think of what Ron is talking about.
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We're gonna take a quick break and say thank you
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to our sponsors and we'll be back here in just
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a moment. On Word of Mom Radio.
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She is brave, she is bold, she is you, and
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we want to tell your story. Are you ready to
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share your journey with us on Word of Mom Radio.
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Go to wordomomradio dot com and register as a guest.
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We want to tell your story because when you win,
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we all win.