June 18, 2025 • 58 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by motivational speaker, Rhonda. We get into red light therapy, nasal polyps and what it looks like to self advocate.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Rhonda, welcome to Chronically
(00:34):
the Sickest. How are you?
I'm great. Thank you so much for having me.
This is a pleasure. I am excited to have you here.
I was just saying before we started recording, but I haven't
heard about the condition that we're talking about today, which
just makes this, this episode somuch more special.
Well, and that's the reason I really enjoy doing podcasts like
(00:55):
yours. Because it's not a disease that
is commonly known or commonly spoken about.
And that's a passion of mine. I, you know, every disease
deserves to be heard about, in my opinion.
And so I also think that it helps those of us who who suffer
(01:16):
from these particular diseases or a particular disease to just
know that there's somebody else out there.
Right, which is like the whole point is to be able to be like,
Oh my gosh, someone else is maybe across the world, but
still someone else that I can relate to.
Absolutely. And you know what, that's the
beauty of technology today. You know, there's there's a lot
(01:41):
that we can gain that's beneficial from the Internet and
technology and social media. It, it also has its negative
side, right? But I always try to look for the
positives out of it. And, and what we see from that
is that we can connect with people literally all over the
(02:01):
world that have like illnesses or like things that we're going
through. And it's oddly enough to say
it's a comfort. Yeah, yeah, I completely agree.
I mean, we wouldn't be doing this without, you know, social
media and electronics. So I'm glad that this worked
(02:22):
out. Yeah, for sure.
Well, for the listeners at home who may not know who you are,
can you tell me a little bit about yourself?
Sure. So I'm Rhonda Nelson and I am, I
wear many different hats. First of all, I'm a wife and I'm
just honored to be that. My husband is Wayne Nelson of
(02:43):
Little River Band. And so that to me is probably my
most important job, if you will.But I'm also an entrepreneur,
I'm a philanthropist, I am a patient advocate.
And that's me tied up into a nice little bundle.
(03:06):
I just, I have a real passion about advocating for patients
with not only a ERD, but just just advocating for patients and
teaching patients how to advocate for themselves because
it's really important in our society today, the way the
medical system is that we are our own patient advocates and we
(03:28):
don't give up or we don't just give in to whatever is laid
before us if it's not answering all the questions.
So it's near. And that's one of the things
that's near and dear to my heartthat I just absolutely love to
speak about. Yeah.
Oh my gosh, that makes a lot of sense.
And I completely agree. It is so important to be your
(03:51):
own advocate because you're right, sometimes you are.
You are all you got. So you really gotta, you know,
get ready to to maybe fight withsome medical professionals.
Well, that's, that's really true.
And, and I think especially my generation and older
generations, we grew up thinkingand believing that what the
doctor said was the wherewithal and be withal.
(04:14):
And what the doctor said is whatwe do and we don't ask questions
and we move on. And that's not really always the
case and it's not always the right answer for us.
And so it's up to us to dig deepand to do our own research, go
(04:36):
into your doctor appointments oryour meetings with your medical
teams and prepared, prepared notonly with what's going on, very
specifically what's going on with you and your body, but with
research, research that you've done on whatever disease that
you have. And ask questions.
(04:58):
Like we can't be afraid to ask questions.
And we have to understand that no question is too
insignificant. Or if you will, as we like to
say, oh, that that question is stupid.
I'm not going to ask that. No, you, you can't go in with
that kind of attitude. And so it's just become really
near and dear to my heart #1 because so let me back up for
(05:22):
your listeners. I have a ERD, which is called
aspirin exacerbated respiratory disease.
It's a component of three issueswithin my body, if you will.
So one is chronic nasal polyps, a lot of sinus infections,
impacted sinus cavities with nasal polyps. 1 is asthma and
(05:43):
then the other is a sensitivity to aspirin and NSAID.
So non steroidal anti inflammatories.
It it, it was a very tough disease to diagnose.
So I lived with it for two yearsand got really lucky.
And, and quite honestly, in the realm of patients that are
diagnosed with this, that that'sa pretty short period of time to
(06:07):
being diagnosed because I had never experienced asthma or
allergies as a kid at all. So this came out of nowhere.
It, it mimics, like it mimics somany things.
The, the puzzling piece, if you will, is the, the sensitivity to
aspirin and insects. And basically what that means is
you're allergic to those. And what happens when you ingest
(06:29):
those is you go into an anaphylactic shock situation.
Oh my goodness. Yeah.
So you're precluded from taking aspirin or Aleve or Motrin or
any of those things that we will, we as the public will just
grab, gravitate to. You have a simple headache, you
(06:50):
have a backache. You you go grab an aspirin, you
grab something like that. I would say I, I don't know the
exact percentage, but there is apercentage of us a ERD patients
that cannot tolerate Tylenol. And there's a percentage
obviously that can I happen to be one of the ones that can
tolerate Tylenol but not Tylenol.
(07:10):
PM So we do so I do have that particular drug at my at at my
ready when I have a headache or something like that.
But oddly enough, Tylenol PM washow I kind of put the pieces of
the puzzle together to realize that I had that sensitivity.
And so I, it, I would take because I was so impacted.
(07:35):
My, my science capacities were so impacted.
And I was having constant sinus infections along with asthmatic
attacks, which I really kind of didn't realize those were
asthmatic attacks because I've never had asthma before.
I would take Tylenol PM at nightto sleep and I would
automatically, you know, say 30 to 45 minutes in, I would have
(07:58):
an asthmatic attack. And so it, but I wasn't the one
that put that piece of the puzzle together, if you will.
I it was just, it was a symptom that I took to my physician and,
and once I found the right doctor, he was like, you don't
have regular asthma or just allergies, he said you have this
(08:23):
disease. And so that's how it started,
but it took two years to get that diagnosis.
OK, yeah, so so back up for me. So you cause first of all, that
is wild. That's insane.
I'm just sitting here and I'm like, I personally like I have
gastritis, so I try to avoid NSADS in general because they're
(08:44):
bad for my tummy. But like I can't imagine not
having that as an option. So that's already mind blowing.
So tell me start from the beginning a little bit for me.
These these two years that you spent trying to figure it out.
So you were just what having some some breathing issues.
Is that how that started? Well, So what happened was I
actually wasn't in my home state.
(09:06):
My husband and I were newly married and I was in California
at his, at his place. And so I, I, I really thought
that I had a cold, or maybe it was just that I was in a
different place and I was sensitive to what was in the air
at the time. It, it just kept getting worse
(09:30):
and I, I quickly realized that it wasn't, it wasn't a cold and
it wasn't allergies. So once I came back, I still
back being back to where we lived, which was Tennessee, I
realized that I, you know, I wasn't getting better and if
anything, I was getting worse and just random things would set
(09:53):
me off. For instance, cigarette smoke
would have an asthmatic attack like almost instantly.
And I'd never experienced anything like that before.
And so, you know, you, you startdown the path, you're like, OK,
we're going to go to an allergist and we're going to
conquer this because this is probably just allergies.
(10:14):
And we're going to get and you know, then you find out that you
have nasal polyps. And the answer to that was, OK,
let's remove the polyps. Most often patients will
experience very quick regrowth of polyps and I would say
(10:34):
especially a ERD patients, they tend to grow back quickly.
They can grow back as quick as 6-8 weeks after your surgery.
Oh my goodness. So the polyps compounded by the
asthma, but we're still like, what?
Because then I went through allergy testing, I did the shots
(10:54):
and that actually made me worse.And so now you're like, what is
what piece of this puzzle are wenot understanding?
And really my particular physician at the time was like,
it's, it's just going to take time with the shots.
It's going to get better. But it didn't now in my case, I
(11:17):
moved. I moved to another state during
this situation. And so I found other physicians,
right? And I really truly lucked out
because I, I found a, an allergist where we had moved to
and he knew immediately what wasgoing on.
(11:38):
But again, I say that was a hugestroke of luck because just a
mere 2324 years ago, you would say a ERD, which back then it
was called Santers triad disease.
You would say that to a doctor and they would look at you like
(11:59):
a puppy, like, I don't know, I've never heard of that before.
And so now you're, you know, you're trying to explain this
whole thing, what's going on? So I got very lucky that I found
a physician that knew what it was.
And then I was on the path to being medically well managed
(12:20):
with medications, right. However, the medications, it was
kind of trial and error and one of the best medications early on
that worked for me was actually an eye drop that was used in a
(12:41):
different way. We, we, I use it as a nasal drop
that ultimately became discontinued by the, by the FDA
and everything else that use wasno longer allowed.
And so then you're back to square one really of trying to
figure out, you know, your, yourdoctors are trying to figure out
(13:03):
what's the best way to medicallymanage your condition.
Mine was compounded again by yetanother move, which meant then
I'm, you know, continuing to look for physicians that know
what this is, right? The Band-Aid drug for this
disease, like many diseases, is Prednisone.
(13:23):
And so massive amounts of Prednisone and a lot of AERD
patients have taken a lot of Prednisone.
They still take a lot of Prednisone.
When they can't reach that well maintained or well managed
status, Prednisone is thrown in there.
There are now Fast forward all these years, there are the
(13:47):
medications have come a long way, but there is no cure #1 #2
the medications that are seemingly to work really well
for patients are more severe in some patients than was
originally thought. But OK, we're, we're definitely
going to see that, right? Because when a drug is new and
(14:09):
being used, you're, you're not going to, you're not going to
know until there's some history and some data there.
Right. But the other, the other issue
with these medications is that they're extremely expensive.
And in some countries other thanthe United States, they're not
available yet. And so those patients there are
(14:32):
still struggling to find the right, and I call it cocktail of
medications because it can be inhalers and it it can be just a
lot of different medications that will work.
But while the disease is the same in each person, how each
(14:53):
person responds to medications and what medications they
respond to can vary greatly. And that's the, I think we see
that in, in all diseases, right?You know, people will say I have
XYZ and this person will say, well, I have XYZ too.
And this person, this person while the disease is the same,
their, their treatment is not identical, if you will.
(15:18):
And so that yeah, that that is very true with a ERD.
So if you don't have access to the medications that are working
really well, which are biologicsright now, we're we're seeing
really, really good results withthose.
If you don't have access to those, you're still you know,
using these other older meds if you will that were were
(15:41):
prescribed pre biologics to try to maintain your disease.
Right. That makes a lot of sense.
It's so interesting to hear like, like you said, kind of how
medication has varied, like the the disease itself was even
called something different and now they're treating it
differently as new stuff comes out.
(16:02):
Yeah, yeah. OK, I have a quick question
'cause I know what it is becauseI got an e-mail from you, but
can you tell me what a ERD stands for?
Sure, it's aspirin exacerbated respiratory disease.
Which is like a crazy name. 'Cause it.
Like, literally. Has aspirin in the name.
(16:23):
Uh huh. And and I so I, I can't, I can't
really decide if I I kind of have a love hate with the name
change because that's a mouthfulto say, right?
Aspirin exasperated respiratory disease.
So we use the acronym a ERD, butI do like the fact that it's
(16:46):
that it has aspirin in it because that is the trickiest
component of the disease to identify.
There's a lot of people that getsinus infections and have polyps
and have asthma that don't have a ERD.
So that's our defining factor. That's the third component that
(17:06):
defines us or classifieds us differently from the patients
that have asthma, regular allergies, chronic sinusitis and
rhinositis and all these other that there are.
Right. When it was called Samter's
triad, you know, people were like, what is that?
(17:30):
I mean, it had the only reason it was named that.
Well, I shouldn't say the only reason.
The reason it was called that back in the day was Doctor
Samter was the guy that kind of put the puzzle together.
And so the disease was named after him.
That to me is a little more work.
(17:52):
Like I remember when it was called that.
And you would if I had an anaphylactic situation and and
and there were times that I I was rushed to the hospital and
you say that name to them. It was kind of like, what in the
world, at least now the medical profession, if you say aspirin
exasperated respiratory disease,it kind of is like, Ding, Ding,
(18:14):
Ding, Ding. OK, there's something in there.
It's. They understand it immediately.
Yeah, there. It's a little more definitive
for sure. Huh.
OK, yeah, I guess that does makesense 'cause you're right when
you say Samter's triad. They're like, who is Samter and
what is? And what is the triad?
Right. The triad could be anything, so
(18:36):
yeah. OK, OK, OK, I, I, I like that.
But you're, you're right, kind of changing the name is always
interesting. Like you said, it's hard to find
medical professionals in generalwho know what it is, which is
the case with most, most chronicillnesses.
You walk in and you go, this is what I have and they go, I'm
sorry, what? So, OK, I have a couple
(18:58):
questions, 'cause this is kind of crazy.
I'm enjoying myself learning allabout this.
I'm sure it's horrible for you to have the disease, but I think
it's interesting. So you're kind of managing it
now with like these different medications or protocols that
you figured out since you have aspirin sensitivity or allergy
(19:21):
to it. Are there other medications that
kind of are adjacent to it? Like you were saying like
Tylenol is kind of fine for you,but also you found out like the
what is it the diphenhydramine or whatever that is in like
Tylenol PM is something that exacerbates it for you.
So is there like other classifications that make like
(19:41):
that you're sensitive to? Me personally, no, but you do
have to be careful with, you know, like let's just talk about
over the counter cough medications.
Some of those do have aspirin inthem or an aspirin derivative,
right. And so you, you have to be
(20:03):
careful with, you have to be careful with those.
And then let's go down the natural path.
Nature's aspirin is white Birch.Right.
Or Willow bark. Willow bark, right?
And so you you want to be careful with that and small
doses I can somewhat tolerate that, but I have to be really
(20:26):
careful. OK.
Pretty much just steer clear of anything.
You know, like Pepcid, those types of medicines we can't
take, shouldn't take. I don't know what this is.
This is crazy. Oh my goodness.
(20:48):
I almost want to be like, did you take aspirin before this?
I know, right. So I've just as a general rule,
I don't take a lot of OTC medicines.
Right. And I guess mainly for me it's I
just would rather play it super safe than to ingest something
(21:11):
and and deal with the repercussions of it.
Right. I mean, I can't imagine.
I mean like people who have peanut allergies are like, you
know, looking at the ingredientson everything.
But it's basically the same because you're right, aspirin is
in everything. Like you really have to, just
like you said, avoid just the over the counter medicine aisle.
(21:32):
Yeah, pretty much. You know, like I can tolerate
Mucinex if I need something likethat, but then when my husband
has a cold, he loves Alka Seltzer cold, can't do it.
So there's just a lot of things that are it's just easier to
(21:54):
avoid than to, you know, worry about the repercussion after the
fact. Now, does it make it easy when
you do have just the common coldor, I don't know, you got a
backache or whatever, especiallyif you can't tolerate Tylenol?
(22:15):
You know, like I said, there aresome some patients that can't
tolerate Tylenol even that makesit really difficult for for a
ERD patients. And I think that's one of the
things that sets this disease apart a little bit in the
difficulty in living with it because we are so confined to
(22:42):
such a small amount of over the counter meds that we can take
that people just normally reached for on a daily basis if
they need it or, you know, whenever the need arises.
And so, you know, it does what people go, well, what do you do
(23:02):
if you have a backache? And in my case, I take Tylenol
in patients that can't tolerate the Tylenol, they're left to
have to work with their physicians to figure out what
type of pain Med would help them.
(23:23):
You know, let's say, let's say aperson has a ERD and they also
have rheumatoid arthritis, severe case of rheumatoid
arthritis. Well, they can't take the meds
that the over the counter meds that they might use to combat
some of that pain with the the arthritis.
(23:44):
So then you're left with, well, what do we do?
And then that's where you reallyhave to have a good medical
team, possibly a pain managementphysician as well, working with
your allergist and your, your, you know, your rheumatologist
and, and your doctors just have to work together.
(24:07):
And that's where it comes into play.
That's where we have to drive the ship, if you will, because
doctors are busy. They don't always read notes
from other doctors. And you know, this whole patient
portal thing that we use now that a lot of physicians have
gone to no really have the time to go in and read every single
(24:29):
thing, right. So that's why it's so important
for us to go into each appointment really ready with
our notes, our bullet points. I mean, we get a short window of
time with our physicians now. And so you got to go in, you got
to go in with your bullet points.
And, and they don't see us 24, 24-7, 365 days a year, right?
(24:52):
They only see us for a very short amount of time, maybe
every six months, maybe every three months.
And so we it's up to us to like document what is going on so
that they know the big picture, not just the picture that
they're seeing in that 1520 thirty minutes if we're lucky,
while we're in front of them. Right.
(25:14):
You want to make sure that you're like tracking symptoms
and also, you know, come with like a huge sign that says I
cannot have aspirin because I imagine you've had multiple
times where like providers will prescribe you something where
you're like, hey, wait. That's not well.
And now it's it's, it's just, it's just one of the first
questions out of my mouth. If I'm seeing a a new physician
(25:36):
and they say you need to try this, then I you know, I have to
say, OK, I'm allergic to aspirin.
What does that? Does that have any interaction
and so? That's a good way to phrase
that. Yeah.
OK, that makes a lot of sense and I like that.
(25:56):
So tell me. OK, So sorry, my brain is kind
of split in two ways here. OK hear me out.
I know y'all have food allergies.
This is a chronic illness pod. I am aware of my audience.
You're gluten free or dairy freeor something free or who knows,
(26:19):
maybe you just got diagnosed with gastroparesis.
What I do know is that belly baking mixes are yummy and all
the bad things free. Plus they were made with
collagen and other vitamins, meaning they're not only not bad
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(26:42):
me. The brownies are bomb by the
way. Y'all Literally my favorite.
Now that I think about it. I may go make some right now
anyway. I kind of want to ask you like
what tools you're using besides maybe like Tylenol or something
(27:02):
like that for pain management, since like you said, the things
that you would normally reach for are not available.
And then I also want to ask you for your tips and tricks on
patient advocacy. So whichever way you would like
to go, I will go that way, OK? Well, we'll, we'll, we'll, we'll
go down the, the tools that I'm using first since we've kind of
(27:25):
been and then we can switch overto the other topic.
So I, I do a lot of things. I do a lot of non conventional
therapies and when I speak to people or in forum, when I'm in
forums and I'm listening to patients and I'm, you know,
(27:46):
hearing what they say, the firstand foremost what I say is try
everything. Find what works for you, right?
I use chiropractic care. I use red light therapy.
I use infrared sauna. I use cold plunge, I use, I use
(28:12):
acupuncture, I use cupping, I use lymphatic massage.
Now I don't do all of those every single day.
I feel like I'd be sore. After that.
Right. And and I and I don't do them.
I've kind of figured out over the years, especially like let,
(28:35):
let's just say I have, I injure my shoulder playing pickleball,
right? And so I'm, I'm now struggling
with how do I deal with this? I, I've kind of figured out what
really works for me, like what order, how to space them out.
I do have a cold plunge at home.I do have an infrared sauna at
(28:57):
home. I do have a grounding mat, which
I, I highly encourage people to try that too.
So I do have those things at home and I do regularly do
chiropractic. Whether I'm aching from some
(29:20):
other reason, I just regularly do that.
That's what I choose to do here.Here's the thing I, I, I truly
believe that all of those thingshelp reduce inflammation in our
body. And when we start to really deep
dive into a lot of diseases, notjust a ERD, but other diseases
as well, we see that people thathave specific diseases have a
(29:44):
lot of inflammation in their body.
So the more you do to reduce theinflammation in, in my case with
a ERD, it's extremely helpful. I think patients would find that
who have other diseases as well that create a lot of
inflammation in the body that they will find those things
helpful. So you just have to kind of you,
(30:07):
you have to kind of figure out what works for you.
Look, I, I've talked to a lot ofpatients that don't, aren't
readily open to any of those kind of treatments at all.
And so I just say to them, I, you know, I can only tell you
what works for me. Maybe give it a try.
(30:28):
Maybe it doesn't work. Maybe it does work, right.
The problem with a lot of those treatments is that they're not
covered by insurance. So you can, I mean, I look, I
spend thousands of dollars a year doing some of those
treatments. Now, like I said, I have some of
those things at home, but it it's so there's also that
(30:52):
component of it too, You know, how much can people do that's
not covered by insurance? And truly that is a whole nother
episode and it's in its own right.
You know, we could, we could talk for hours about that
situation too. But so I use a lot of those
tools. I also use, I'm a really firm
(31:14):
believer in supplements. But here's the thing about
supplements. Before you take supplements, you
must discuss with your physicianhow they interact with the meds
that you're taking. Don't just go out there and
start taking supplements like that's the worst thing you could
possibly do. And then also make sure you're
(31:34):
getting your supplements from a reputable source.
They're not. Regulated.
No, absolutely not. And, and from a, you know, from
a quality brand as well, I cringe.
I like, I literally cringe when I hear people say I buy my
(31:55):
supplements on Amazon and I'll tell you why I cringe.
I cringe because you don't know how long those supplements have
been sitting on a shelf in a warehouse somewhere and have
experienced the fluctuations of temperature like you, you, you
have no idea. So.
(32:18):
Yeah, thought about that. I mean, I totally agree with the
reputable brand thing, but I didn't really think about you're
right, The fluctuations in temperature, things like that,
the shipping time, wow. Yeah.
OK. So, you know, like I was, I was
sharing with someone on another podcast last week and it's I'm
(32:41):
in pretty much every decent sizearea that you live in, you're
going to find an apothecary. Your apothecary is going to have
a lot of information. They know a lot and they're
going to be able to help you if that's the path you choose to go
(33:04):
down. And I'm not saying go down that
path and totally put aside the medication, the big pharma
medications. I do both.
I I do both. I take medications to maintain
my disease, but I also do all these other things, including
supplements. And for me personally, it has
(33:26):
allowed me to back off on certain other medications that
mean that I was taken to maintain my disease, which in my
mind is a positive. Of course, of course, you really
want to find like that middle ground where like you said,
you're kind of using alternativetherapies and at the same time
(33:47):
still managing your condition with like Western medicine, as
they say. But I will say I really OK, a
couple things. I love what you said about the
alternative therapies. I think a lot of those are
overlooked. And yes, like you said, they are
expensive as Cus sometimes, but also things like you said, like
(34:08):
the chiropractor, like there's tons of places now that you can
just do like a monthly subscription of like 20 bucks
and go when you need. And then like a cold plunge, you
can fill your bathtub with ice water and try it out that way if
you can't like do that. So I think it's a great option.
And then you said apothecary. And I feel like it sounds like a
(34:29):
cozy video game. You know, you walk in and you're
like, I am just a traveler. I'm looking for looking for
these, these green plants to help me with my pain.
And they they know what they're doing.
Yeah, they do. They do look.
So here's the thing too. I think as we've advanced in the
years, so my, I'm a lot older than you and in, in my
(34:54):
generation, it was like really fancy to have a sauna in your
house. Like if a house had a sauna,
that's kind of wow, because we typically only saw those at like
health spas, right? We got our first sauna back in
(35:15):
2000, I think it was. And it was a lot.
We, it was a lot of money at thetime.
But Fast forward today, we're onour third one.
And while the big ones that you walk in, they're infrared and
they do all the things right andthey have the red light therapy
(35:38):
in them and all this kind of stuff.
While they are still expensive, there are other ways.
I said my husband was a musicianand we have two tour buses, one
is our bus and I have a sauna blanket on that.
So how does that work you? Just get in it, you zip it up,
(35:59):
your head is out, you're laying down and you're getting, it's
the same, it's, it's electric, it's the same.
It heats up to, you know, 150°. But they also have little
portable sauna units now that you can have in your home and
they're just several $100.00. So there's ways to achieve these
things. Now before I had the actual cold
(36:23):
plunge at home, I would just every morning after when I
finished my normal warm shower, I turned the hot off.
I left the cold on blasting and I let it get as cold as it would
and I would just stand under it.I mean, that's how I started it
because I didn't have the cold plunge, right.
But now there's even places you can go We.
(36:46):
Had gyms like now. What's that?
Gyms have them now, like cold plunges and red light therapy.
You're. Right, Red light therapy I was
at, I don't know, a big box likea discount big box store.
I'm not even sure which one it was, but they had a portable
cold plunge that was a couple 100 bucks.
(37:07):
Right. Oh, fun.
So things are becoming more accessible to a broader range of
demographics, which I think is amazing.
Red light. There are reputable red light
units that you can order from Amazon.
(37:27):
Now, you're not gonna be able toget your whole body under there,
right? Whether you hang it on the wall
or whether it's a handheld, but you can use it for certain areas
or instead of thinking that you have to buy 10 panels to cover
your whole body, buy 2, buy one and stand in front of it.
(37:51):
You're still going to reap some benefits from it.
So, and there's also, like you said, like the chiropractic
where you can go to and, and, and have a membership or
whatever. There's red light therapy places
now, there's infrared sauna places now they're popping up
all over. Just think of how nail salons
(38:15):
started to pop up. These places are starting to pop
up. And you know, so it, it's, it's
becoming more accessible to to be able to obtain some of these
and and use them. Yeah, absolutely.
I completely agree. And finding something that is in
your budget kind of like you said, where it's like, yeah, you
don't need to buy like a solar panels worth of red light.
(38:39):
Absolutely. You can just, yeah, like you
said, go on Amazon, maybe do some research, try to find a
reputable brand. And then, yeah, buy one.
See if you feel like, OK, this is this is helping.
I'm going to maybe try to find, you know, the next tier of
what's available to me. But I always love hearing what
people are doing, especially with alternative medicine when
(39:02):
you're kind of using it in tandem with like what your
doctor prescribes. But it's always interesting
because when you are chronicallyI'll, I feel like most of us are
on 456 medications and finding anything where you can be like,
OK, I feel like my condition is being managed by a couple
(39:24):
alternative therapies and a couple of medications.
Like you're just slowly like making sure that your body is
not subjected to a ton of side effects.
And but also, yeah, you need medication sometimes.
But it's so interesting to hear what you're saying and I
appreciate it. I'm so excited.
I'm going to go do some researchafter.
(39:45):
This, there's, there's another tool that I, I use, especially
when I have a flare because the,my flares typically happen at
night. Spring and fall are worse for me
because things are blooming or dying off, right.
And so it's it's, it's truly, it's a.
It's a migraine cap is what it is.
(40:05):
You put it, you leave it in yourfreezer.
It's very pliable. You put it on, but the pressure
and it, it's really because of your sinus cavities and polyps
and things like that, the ice. So I found that those it, that's
a tool for me when I have a flare and I don't know, I think
I got mine off Amazon and I, I keep, I keep multiples in the
(40:29):
freezer because they don't have a long lifetime spanning the of
the cold when you put them on. But again, it's a, it's
something that's affordable. It's something that might be
very helpful to someone that youdon't think about.
Another thing this took me a while to be able to do, but once
(40:49):
I, once I was able to do it, it,it was very helpful.
I would do dry needling and cupping, but that, so the
cupping, I decided to learned todo this like I was having some
issues with joints, which was a,a side effect of one of the
(41:11):
biologics that I was on. And so I was having like with my
knees, I, I, I bought a cupping set and I am able to do that on
my knee, you know, on my thighs,my knees, my calves myself.
Like I said, it's not pleasant to look at because it's it's
(41:32):
very bizarre to sit there and put those suction cups and watch
that skin come up and turn that purple color, right.
But once you get used to doing it, it, you know, it's very
helpful. And I mean, every time I would
go get it done, it's 100 plus dollars.
So that's a lot and it's not covered by insurance.
(41:56):
No, of course not. Right.
Like I said, we could talk a whole lot on that.
I know I've been doing a topicalseries where we kind of get
into, like, things that people like to argue about.
So I would love to do one on, like, insurance.
Like I want to talk to a former insurance agent and just kind of
like, be like, what is this? What are we doing?
(42:17):
How does this work? But yeah, I love that.
And especially with a lot of Eastern medicine, it's so
interesting to kind of see what maybe people in other countries
are doing. So like things like cupping is
super common in other places. But here it's like, like you
said, it's like a little weird. People are like, why are you
(42:38):
doing this? You look like you got attacked
by an octopus. Yeah, No, listen, I remember,
I'm gonna go back probably 15 years ago maybe.
I remember distinctly seeing in one of the rag magazines, you
know, like the US weeklies or something like that, a celebrity
had gone and had cupping done and was walking around LA with a
(43:01):
tank top on. And what are those big marks on
their shoulders? La, la, la.
And I'm like, come on, folks, this is this is our, this is
what someone has chosen to do for their own health.
Like we shouldn't have to explain it.
Like we just shouldn't it. It shouldn't be thought of as
(43:23):
weird. It's what someone has chosen to
do for their health. I mean, I think in general, I
think as a society we could do alittle more of just be like, oh,
interesting and don't like. And move on, right?
Yeah, you don't need to be all judgmental, like, and even like
you said earlier, when you're like, oh, I'm doing XYZ for my
(43:44):
health, for my body, and someone's like, oh, I don't like
that. You're like, OK, well, that's
fine, That's what I'm doing. And we could just all move on
and be like, yeah. We had a problem in in a in one
of the Facebook groups that is aERD specifically where one of
the main admins would ban peoplefrom the group for talking about
(44:10):
non conventional therapies that they used.
Now that has since been kind of that issues been fixed, if you
will, but everyone in that groupalso knows that kind of be
careful how you talk about it. I stay in the group because it's
(44:34):
informative, because we have a lot of information to share with
one another, but we're constantly tiptoeing around
that. And I think that's absolutely
ridiculous that we have to be like that because it's not that
we're saying these treatments are a cure.
We're just saying when someone says I have this issue, I've
(44:58):
tried everything. Can someone please share
something that has helped you that may help me?
We're throwing these things out.And again, we're not saying
they're cure alls. We're not saying they're the
wherewithal and be with all. We're just saying these are some
of the things that helped me with that same issue that you're
(45:18):
having. Maybe you want to try that too.
I I don't know. I that's look, we could get a we
could go on to a whole nother a different conversation about how
society perceives things like that and how, you know, people
are not open to hearing these things that people do to help
(45:40):
themselves and how judgmental people can be about some of
these therapies that are really helpful for some people.
Yeah, I think it's definitely kind of like you said, it could
be a whole thing, but it's it's definitely, I think on one side
there are people who they're like Western medicine is we
don't like that. We will not.
(46:01):
I don't think that people shouldbe getting prescriptions from
doctors. And then there's other people
who are like, I don't want to try any alternative medicines.
All of it's fake and all of it's, you know, it's just
made-up. And you kind of have to meet in
the middle and be like, OK, like, let's talk about this.
What? We're yeah.
And you know, that's a that's a great point because I I've kind
of been on my my soapbox here about the the non conventional
(46:25):
therapies. There's also people out there,
look, read what biologics are, read about them, and people will
say, Oh my God, I can't believe you're putting that in your
body. Here's the thing, I don't have a
choice. Breathing is not optional.
I have to breathe right, Right. And so I don't have a choice.
(46:46):
If I want to live my life to itsfullest with this disease very
well medically managed, I have to take this biologic, right?
And so, I mean, there are tons of people out there, right?
I don't know why you would want to do that.
Well, because I want to, you want to live.
(47:07):
I want to live. But I'm also doing these other
therapies to kind of counterbalance that particular
thing that I'm putting in my body, right?
Like I'm trying to keep my body the healthiest that it possibly
can be while I'm putting this other drug in my body to be able
(47:27):
to live. So there is that whole other
side and that's a whole nother thing.
I mean, there's a lot of diseases out there that people
take medications for that If they didn't take those
medications, they would not live.
I mean, let's just face it, that's the bottom line.
And they get chastised for for taking medications.
But all you can do. I feel like we can just speak
(47:49):
positively about this. We may not change everybody.
We may not change the world's thinking in our lifetime, but
the more that we are open about talking about this and trying to
learn from others and hear both sides of the coin, I think, I
think that's progress. Yeah, agree.
(48:11):
OK, now that we're kind of like,wow, that was like a crazy
conversation. But honestly, I think that
that's super helpful and the listeners are going to love it.
But so we were kind of talking about earlier self advocacy and
you were kind of saying how you've learned a lot about that.
And I guess that is kind of a tool.
So share with me a little bit about that and we can then kind
(48:34):
of wrap up the episode. I did not do for myself early on
what I really am proactive aboutfor patients to do for
themselves. I didn't journal everything that
was going on and when I was given another medication, write
(48:56):
down things that I thought this is odd since I've been taking
this medication, this is happening.
I didn't do that in the beginning.
And you know, I wish I had of because I, I think I probably
would have been a little more quick to get a diagnosis.
I probably could have avoided a whole ton of large amounts of
(49:17):
Prednisone and I could have avoided some of the issues that
that has created in my life. So just as I learned and started
to realize, wow, if I go in armed with my research, go in
armed with my questions, I'm getting a lot farther in the, in
the treatment and management of my disease and in my
(49:41):
relationships with my physicians.
Then if I just go in and go, Oh yeah, it's good.
You know, so I, that was kind ofthe beginning of why I thought,
wow, you know, I don't, people need to really understand the
importance of being your own self advocate, right?
(50:01):
But then Fast forward to I got involved with Allergy Asthma
Network. And so I first got involved with
them by participating in in their Capitol Hill Day, which
happens every May. Oh.
And that's where people, so allergy Asthma Network has a a
lot of diseases under their umbrella, right?
(50:23):
And they are just an amazing source to educate patients, to
educate caregivers of patients. They do a lot of work in getting
a lot of bills passed through legislation, things like getting
epinephrine into schools and youknow, all just really important
(50:48):
legislation that that they advocate for that.
So I, I started out by participating in Capitol Hill
Day and then just kept being involved with them and now I'm
actually on their executive board.
I absolutely love the work that they do and they are an amazing
(51:08):
resource for patients with all types of asthma, allergy, all
kinds of other diseases that fall under that umbrella.
So that's allergyasthmanetwork.org.
I can't stress enough. And you know, so that's just
really where my passion came. And then I got really tired of
(51:33):
not explaining my disease because it was just too, because
from the outside, I look fine. And so people would go, oh, you
just have a cold or you just have allergies or you just have
asthma. No, it's not just you don't put
just in front of any disease, right.
And so I think that lit a fire and I and I got really tired of
(51:55):
going, Yep, just got allergies because it was too difficult to
explain. No one had ever heard about it.
No one really was listening. And I thought, you know what?
I'm not the only one out there with this disease.
And so I'm not going to stop talking about it.
A lot of well known diseases geta lot of attention.
(52:17):
It's the lesser known diseases that don't and they're just as
important and oftentimes just asfatal as some of these other
diseases. And so it just takes people to
talk about them. But the other thing that it does
is it brings people together that have the same disease.
(52:39):
Like I said, I'm in a lot of forums, I speak to a lot of
groups I and this is where we find one level of our support
and it's in those type of surroundings.
And so it just became really passionate to me to, to, to
stand up and talk about it. Yeah, that's amazing.
(53:01):
And yes, find new organizations that promote self advocacy and
allow you to connect with other people and make sure that laws
are being passed are so important.
So I appreciate you bringing up the AAN, right?
Yes. OK, OK, I love that it's the and
Anne instead of. Instead of just, it's Anne.
(53:25):
That's right. That's amazing.
Oh my gosh. And you said that they do a
Capitol Hill event in May. Yes, it's also AA NS 40th
anniversary. So we will be up there to
celebrate the organization, but also to, to continue to do major
work on Capitol Hill. And I, you know, I just, I, it,
(53:52):
it's just a passion. Yes, of course that's amazing.
Oh my gosh, I'm so excited for you.
And like, I feel like during this episode I learned a lot.
I'm really hoping that the listeners learned something as
well because I, I genuinely feellike we covered so many topics
and it's kind of perfect to likeclose it out being like, here is
(54:15):
an organization that if you are struggling with anything under
this umbrella, they can help. There are other.
People like you. Absolutely.
And I also hope that too, if there's patients out or, or
listeners out there that have been struggling with asthma and,
and what allergies, if you will,or nasal polyps and they just
(54:37):
can't quite figure out why they're not getting better.
Maybe this will be like a light bulb where they go, wow, maybe
this is what I've been searchingfor, you know, maybe this is
what I have. And, and, and lastly, what I
want to say about a ER D2 is it's an exhausting disease,
(55:01):
right? It's exhausting because when
you're in the thick of it and it's not controlled, you're not
breathing 100% capacity. Therefore you're constantly
tired and fatigued. Your body's not getting the
oxygen it needs. You tend to isolate yourself
because you just don't have the energy to do the things that you
(55:22):
need to do and it can wear on you mentally.
What I want to say to patients is there is hope out there.
There are so many new drugs right now.
It's just about finding the physician, letting that that
physician, understanding all of your symptoms and putting the
puzzle together. But there is hope.
(55:43):
I mean, there is absolute hope and I don't want people to give
up on that. Oh, what a powerful message.
Thank you. This has been so amazing.
If the listeners would like to maybe connect with you further,
do you have social media or anything like that that you
(56:06):
would like to? And I love for people to reach
out to me. My website is Rhonda B
nelson.com Instagram and Facebook is the same.
And I also, you know, I have a little added extra in that, like
I said, my husband is the lead singer and bass player for
(56:28):
Little River Band and I go out on the road with him quite a
bit. And so I always like to say if
anybody's ever had a Little River Band concert, please ask
one of our crew members or the band after the show if I'm
there. Because if I am, I would love to
meet people. I love to meet people that I've,
(56:49):
that have heard me on podcasts or have reached out to me
through social media or on my website.
I just, I, I love to connect. And so I would just say that as
well because I, this is the band's 50th anniversary, so I'm
out on the road more than normaland I would love to meet people.
Oh my goodness, that's amazing. Well, yes, great.
(57:12):
Well, then, yeah. Listeners, you can find her on
social media and in person if you want to go to a fun concert.
That's right. That's right.
Well, Rhonda, thank you so much for being on the podcast.
Genuinely, this was so fun and informative.
Oh, it was really a pleasure. I, I just enjoy so much when
things are just so easy and theyflow well and you know, it,
(57:35):
it's, it just has been a really great podcast.
I really appreciate the opportunity.
Yay. OK, Well listener, that is all
we have for you. Otherwise, I'm Clark, this is
Rhonda, and this has been chronically the sickest podcast
you know. That's all folks.
(57:58):
Thank you so much for listening.If you like this episode, click
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(58:27):
Disclaimer, this is a conversational podcast and while
we may share a diagnosis journey, symptoms, and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Rhonda, welcome to Chronically
(00:34):
the Sickest. How are you?
I'm great. Thank you so much for having me.
This is a pleasure. I am excited to have you here.
I was just saying before we started recording, but I haven't
heard about the condition that we're talking about today, which
just makes this, this episode somuch more special.
Well, and that's the reason I really enjoy doing podcasts like
(00:55):
yours. Because it's not a disease that
is commonly known or commonly spoken about.
And that's a passion of mine. I, you know, every disease
deserves to be heard about, in my opinion.
And so I also think that it helps those of us who who suffer
(01:16):
from these particular diseases or a particular disease to just
know that there's somebody else out there.
Right, which is like the whole point is to be able to be like,
Oh my gosh, someone else is maybe across the world, but
still someone else that I can relate to.
Absolutely. And you know what, that's the
beauty of technology today. You know, there's there's a lot
(01:41):
that we can gain that's beneficial from the Internet and
technology and social media. It, it also has its negative
side, right? But I always try to look for the
positives out of it. And, and what we see from that
is that we can connect with people literally all over the
(02:01):
world that have like illnesses or like things that we're going
through. And it's oddly enough to say
it's a comfort. Yeah, yeah, I completely agree.
I mean, we wouldn't be doing this without, you know, social
media and electronics. So I'm glad that this worked
(02:22):
out. Yeah, for sure.
Well, for the listeners at home who may not know who you are,
can you tell me a little bit about yourself?
Sure. So I'm Rhonda Nelson and I am, I
wear many different hats. First of all, I'm a wife and I'm
just honored to be that. My husband is Wayne Nelson of
(02:43):
Little River Band. And so that to me is probably my
most important job, if you will.But I'm also an entrepreneur,
I'm a philanthropist, I am a patient advocate.
And that's me tied up into a nice little bundle.
(03:06):
I just, I have a real passion about advocating for patients
with not only a ERD, but just just advocating for patients and
teaching patients how to advocate for themselves because
it's really important in our society today, the way the
medical system is that we are our own patient advocates and we
(03:28):
don't give up or we don't just give in to whatever is laid
before us if it's not answering all the questions.
So it's near. And that's one of the things
that's near and dear to my heartthat I just absolutely love to
speak about. Yeah.
Oh my gosh, that makes a lot of sense.
And I completely agree. It is so important to be your
(03:51):
own advocate because you're right, sometimes you are.
You are all you got. So you really gotta, you know,
get ready to to maybe fight withsome medical professionals.
Well, that's, that's really true.
And, and I think especially my generation and older
generations, we grew up thinkingand believing that what the
doctor said was the wherewithal and be withal.
(04:14):
And what the doctor said is whatwe do and we don't ask questions
and we move on. And that's not really always the
case and it's not always the right answer for us.
And so it's up to us to dig deepand to do our own research, go
(04:36):
into your doctor appointments oryour meetings with your medical
teams and prepared, prepared notonly with what's going on, very
specifically what's going on with you and your body, but with
research, research that you've done on whatever disease that
you have. And ask questions.
(04:58):
Like we can't be afraid to ask questions.
And we have to understand that no question is too
insignificant. Or if you will, as we like to
say, oh, that that question is stupid.
I'm not going to ask that. No, you, you can't go in with
that kind of attitude. And so it's just become really
near and dear to my heart #1 because so let me back up for
(05:22):
your listeners. I have a ERD, which is called
aspirin exacerbated respiratory disease.
It's a component of three issueswithin my body, if you will.
So one is chronic nasal polyps, a lot of sinus infections,
impacted sinus cavities with nasal polyps. 1 is asthma and
(05:43):
then the other is a sensitivity to aspirin and NSAID.
So non steroidal anti inflammatories.
It it, it was a very tough disease to diagnose.
So I lived with it for two yearsand got really lucky.
And, and quite honestly, in the realm of patients that are
diagnosed with this, that that'sa pretty short period of time to
(06:07):
being diagnosed because I had never experienced asthma or
allergies as a kid at all. So this came out of nowhere.
It, it mimics, like it mimics somany things.
The, the puzzling piece, if you will, is the, the sensitivity to
aspirin and insects. And basically what that means is
you're allergic to those. And what happens when you ingest
(06:29):
those is you go into an anaphylactic shock situation.
Oh my goodness. Yeah.
So you're precluded from taking aspirin or Aleve or Motrin or
any of those things that we will, we as the public will just
grab, gravitate to. You have a simple headache, you
(06:50):
have a backache. You you go grab an aspirin, you
grab something like that. I would say I, I don't know the
exact percentage, but there is apercentage of us a ERD patients
that cannot tolerate Tylenol. And there's a percentage
obviously that can I happen to be one of the ones that can
tolerate Tylenol but not Tylenol.
(07:10):
PM So we do so I do have that particular drug at my at at my
ready when I have a headache or something like that.
But oddly enough, Tylenol PM washow I kind of put the pieces of
the puzzle together to realize that I had that sensitivity.
And so I, it, I would take because I was so impacted.
(07:35):
My, my science capacities were so impacted.
And I was having constant sinus infections along with asthmatic
attacks, which I really kind of didn't realize those were
asthmatic attacks because I've never had asthma before.
I would take Tylenol PM at nightto sleep and I would
automatically, you know, say 30 to 45 minutes in, I would have
(07:58):
an asthmatic attack. And so it, but I wasn't the one
that put that piece of the puzzle together, if you will.
I it was just, it was a symptom that I took to my physician and,
and once I found the right doctor, he was like, you don't
have regular asthma or just allergies, he said you have this
(08:23):
disease. And so that's how it started,
but it took two years to get that diagnosis.
OK, yeah, so so back up for me. So you cause first of all, that
is wild. That's insane.
I'm just sitting here and I'm like, I personally like I have
gastritis, so I try to avoid NSADS in general because they're
(08:44):
bad for my tummy. But like I can't imagine not
having that as an option. So that's already mind blowing.
So tell me start from the beginning a little bit for me.
These these two years that you spent trying to figure it out.
So you were just what having some some breathing issues.
Is that how that started? Well, So what happened was I
actually wasn't in my home state.
(09:06):
My husband and I were newly married and I was in California
at his, at his place. And so I, I, I really thought
that I had a cold, or maybe it was just that I was in a
different place and I was sensitive to what was in the air
at the time. It, it just kept getting worse
(09:30):
and I, I quickly realized that it wasn't, it wasn't a cold and
it wasn't allergies. So once I came back, I still
back being back to where we lived, which was Tennessee, I
realized that I, you know, I wasn't getting better and if
anything, I was getting worse and just random things would set
(09:53):
me off. For instance, cigarette smoke
would have an asthmatic attack like almost instantly.
And I'd never experienced anything like that before.
And so, you know, you, you startdown the path, you're like, OK,
we're going to go to an allergist and we're going to
conquer this because this is probably just allergies.
(10:14):
And we're going to get and you know, then you find out that you
have nasal polyps. And the answer to that was, OK,
let's remove the polyps. Most often patients will
experience very quick regrowth of polyps and I would say
(10:34):
especially a ERD patients, they tend to grow back quickly.
They can grow back as quick as 6-8 weeks after your surgery.
Oh my goodness. So the polyps compounded by the
asthma, but we're still like, what?
Because then I went through allergy testing, I did the shots
(10:54):
and that actually made me worse.And so now you're like, what is
what piece of this puzzle are wenot understanding?
And really my particular physician at the time was like,
it's, it's just going to take time with the shots.
It's going to get better. But it didn't now in my case, I
(11:17):
moved. I moved to another state during
this situation. And so I found other physicians,
right? And I really truly lucked out
because I, I found a, an allergist where we had moved to
and he knew immediately what wasgoing on.
(11:38):
But again, I say that was a hugestroke of luck because just a
mere 2324 years ago, you would say a ERD, which back then it
was called Santers triad disease.
You would say that to a doctor and they would look at you like
(11:59):
a puppy, like, I don't know, I've never heard of that before.
And so now you're, you know, you're trying to explain this
whole thing, what's going on? So I got very lucky that I found
a physician that knew what it was.
And then I was on the path to being medically well managed
(12:20):
with medications, right. However, the medications, it was
kind of trial and error and one of the best medications early on
that worked for me was actually an eye drop that was used in a
(12:41):
different way. We, we, I use it as a nasal drop
that ultimately became discontinued by the, by the FDA
and everything else that use wasno longer allowed.
And so then you're back to square one really of trying to
figure out, you know, your, yourdoctors are trying to figure out
(13:03):
what's the best way to medicallymanage your condition.
Mine was compounded again by yetanother move, which meant then
I'm, you know, continuing to look for physicians that know
what this is, right? The Band-Aid drug for this
disease, like many diseases, is Prednisone.
(13:23):
And so massive amounts of Prednisone and a lot of AERD
patients have taken a lot of Prednisone.
They still take a lot of Prednisone.
When they can't reach that well maintained or well managed
status, Prednisone is thrown in there.
There are now Fast forward all these years, there are the
(13:47):
medications have come a long way, but there is no cure #1 #2
the medications that are seemingly to work really well
for patients are more severe in some patients than was
originally thought. But OK, we're, we're definitely
going to see that, right? Because when a drug is new and
(14:09):
being used, you're, you're not going to, you're not going to
know until there's some history and some data there.
Right. But the other, the other issue
with these medications is that they're extremely expensive.
And in some countries other thanthe United States, they're not
available yet. And so those patients there are
(14:32):
still struggling to find the right, and I call it cocktail of
medications because it can be inhalers and it it can be just a
lot of different medications that will work.
But while the disease is the same in each person, how each
(14:53):
person responds to medications and what medications they
respond to can vary greatly. And that's the, I think we see
that in, in all diseases, right?You know, people will say I have
XYZ and this person will say, well, I have XYZ too.
And this person, this person while the disease is the same,
their, their treatment is not identical, if you will.
(15:18):
And so that yeah, that that is very true with a ERD.
So if you don't have access to the medications that are working
really well, which are biologicsright now, we're we're seeing
really, really good results withthose.
If you don't have access to those, you're still you know,
using these other older meds if you will that were were
(15:41):
prescribed pre biologics to try to maintain your disease.
Right. That makes a lot of sense.
It's so interesting to hear like, like you said, kind of how
medication has varied, like the the disease itself was even
called something different and now they're treating it
differently as new stuff comes out.
(16:02):
Yeah, yeah. OK, I have a quick question
'cause I know what it is becauseI got an e-mail from you, but
can you tell me what a ERD stands for?
Sure, it's aspirin exacerbated respiratory disease.
Which is like a crazy name. 'Cause it.
Like, literally. Has aspirin in the name.
(16:23):
Uh huh. And and I so I, I can't, I can't
really decide if I I kind of have a love hate with the name
change because that's a mouthfulto say, right?
Aspirin exasperated respiratory disease.
So we use the acronym a ERD, butI do like the fact that it's
(16:46):
that it has aspirin in it because that is the trickiest
component of the disease to identify.
There's a lot of people that getsinus infections and have polyps
and have asthma that don't have a ERD.
So that's our defining factor. That's the third component that
(17:06):
defines us or classifieds us differently from the patients
that have asthma, regular allergies, chronic sinusitis and
rhinositis and all these other that there are.
Right. When it was called Samter's
triad, you know, people were like, what is that?
(17:30):
I mean, it had the only reason it was named that.
Well, I shouldn't say the only reason.
The reason it was called that back in the day was Doctor
Samter was the guy that kind of put the puzzle together.
And so the disease was named after him.
That to me is a little more work.
(17:52):
Like I remember when it was called that.
And you would if I had an anaphylactic situation and and
and there were times that I I was rushed to the hospital and
you say that name to them. It was kind of like, what in the
world, at least now the medical profession, if you say aspirin
exasperated respiratory disease,it kind of is like, Ding, Ding,
(18:14):
Ding, Ding. OK, there's something in there.
It's. They understand it immediately.
Yeah, there. It's a little more definitive
for sure. Huh.
OK, yeah, I guess that does makesense 'cause you're right when
you say Samter's triad. They're like, who is Samter and
what is? And what is the triad?
Right. The triad could be anything, so
(18:36):
yeah. OK, OK, OK, I, I, I like that.
But you're, you're right, kind of changing the name is always
interesting. Like you said, it's hard to find
medical professionals in generalwho know what it is, which is
the case with most, most chronicillnesses.
You walk in and you go, this is what I have and they go, I'm
sorry, what? So, OK, I have a couple
(18:58):
questions, 'cause this is kind of crazy.
I'm enjoying myself learning allabout this.
I'm sure it's horrible for you to have the disease, but I think
it's interesting. So you're kind of managing it
now with like these different medications or protocols that
you figured out since you have aspirin sensitivity or allergy
(19:21):
to it. Are there other medications that
kind of are adjacent to it? Like you were saying like
Tylenol is kind of fine for you,but also you found out like the
what is it the diphenhydramine or whatever that is in like
Tylenol PM is something that exacerbates it for you.
So is there like other classifications that make like
(19:41):
that you're sensitive to? Me personally, no, but you do
have to be careful with, you know, like let's just talk about
over the counter cough medications.
Some of those do have aspirin inthem or an aspirin derivative,
right. And so you, you have to be
(20:03):
careful with, you have to be careful with those.
And then let's go down the natural path.
Nature's aspirin is white Birch.Right.
Or Willow bark. Willow bark, right?
And so you you want to be careful with that and small
doses I can somewhat tolerate that, but I have to be really
(20:26):
careful. OK.
Pretty much just steer clear of anything.
You know, like Pepcid, those types of medicines we can't
take, shouldn't take. I don't know what this is.
This is crazy. Oh my goodness.
(20:48):
I almost want to be like, did you take aspirin before this?
I know, right. So I've just as a general rule,
I don't take a lot of OTC medicines.
Right. And I guess mainly for me it's I
just would rather play it super safe than to ingest something
(21:11):
and and deal with the repercussions of it.
Right. I mean, I can't imagine.
I mean like people who have peanut allergies are like, you
know, looking at the ingredientson everything.
But it's basically the same because you're right, aspirin is
in everything. Like you really have to, just
like you said, avoid just the over the counter medicine aisle.
(21:32):
Yeah, pretty much. You know, like I can tolerate
Mucinex if I need something likethat, but then when my husband
has a cold, he loves Alka Seltzer cold, can't do it.
So there's just a lot of things that are it's just easier to
(21:54):
avoid than to, you know, worry about the repercussion after the
fact. Now, does it make it easy when
you do have just the common coldor, I don't know, you got a
backache or whatever, especiallyif you can't tolerate Tylenol?
(22:15):
You know, like I said, there aresome some patients that can't
tolerate Tylenol even that makesit really difficult for for a
ERD patients. And I think that's one of the
things that sets this disease apart a little bit in the
difficulty in living with it because we are so confined to
(22:42):
such a small amount of over the counter meds that we can take
that people just normally reached for on a daily basis if
they need it or, you know, whenever the need arises.
And so, you know, it does what people go, well, what do you do
(23:02):
if you have a backache? And in my case, I take Tylenol
in patients that can't tolerate the Tylenol, they're left to
have to work with their physicians to figure out what
type of pain Med would help them.
(23:23):
You know, let's say, let's say aperson has a ERD and they also
have rheumatoid arthritis, severe case of rheumatoid
arthritis. Well, they can't take the meds
that the over the counter meds that they might use to combat
some of that pain with the the arthritis.
(23:44):
So then you're left with, well, what do we do?
And then that's where you reallyhave to have a good medical
team, possibly a pain managementphysician as well, working with
your allergist and your, your, you know, your rheumatologist
and, and your doctors just have to work together.
(24:07):
And that's where it comes into play.
That's where we have to drive the ship, if you will, because
doctors are busy. They don't always read notes
from other doctors. And you know, this whole patient
portal thing that we use now that a lot of physicians have
gone to no really have the time to go in and read every single
(24:29):
thing, right. So that's why it's so important
for us to go into each appointment really ready with
our notes, our bullet points. I mean, we get a short window of
time with our physicians now. And so you got to go in, you got
to go in with your bullet points.
And, and they don't see us 24, 24-7, 365 days a year, right?
(24:52):
They only see us for a very short amount of time, maybe
every six months, maybe every three months.
And so we it's up to us to like document what is going on so
that they know the big picture, not just the picture that
they're seeing in that 1520 thirty minutes if we're lucky,
while we're in front of them. Right.
(25:14):
You want to make sure that you're like tracking symptoms
and also, you know, come with like a huge sign that says I
cannot have aspirin because I imagine you've had multiple
times where like providers will prescribe you something where
you're like, hey, wait. That's not well.
And now it's it's, it's just, it's just one of the first
questions out of my mouth. If I'm seeing a a new physician
(25:36):
and they say you need to try this, then I you know, I have to
say, OK, I'm allergic to aspirin.
What does that? Does that have any interaction
and so? That's a good way to phrase
that. Yeah.
OK, that makes a lot of sense and I like that.
(25:56):
So tell me. OK, So sorry, my brain is kind
of split in two ways here. OK hear me out.
I know y'all have food allergies.
This is a chronic illness pod. I am aware of my audience.
You're gluten free or dairy freeor something free or who knows,
(26:19):
maybe you just got diagnosed with gastroparesis.
What I do know is that belly baking mixes are yummy and all
the bad things free. Plus they were made with
collagen and other vitamins, meaning they're not only not bad
for you, they're good for you. Click the link in the
description to try them out and get 20% off with code sickest on
(26:42):
me. The brownies are bomb by the
way. Y'all Literally my favorite.
Now that I think about it. I may go make some right now
anyway. I kind of want to ask you like
what tools you're using besides maybe like Tylenol or something
(27:02):
like that for pain management, since like you said, the things
that you would normally reach for are not available.
And then I also want to ask you for your tips and tricks on
patient advocacy. So whichever way you would like
to go, I will go that way, OK? Well, we'll, we'll, we'll, we'll
go down the, the tools that I'm using first since we've kind of
(27:25):
been and then we can switch overto the other topic.
So I, I do a lot of things. I do a lot of non conventional
therapies and when I speak to people or in forum, when I'm in
forums and I'm listening to patients and I'm, you know,
(27:46):
hearing what they say, the firstand foremost what I say is try
everything. Find what works for you, right?
I use chiropractic care. I use red light therapy.
I use infrared sauna. I use cold plunge, I use, I use
(28:12):
acupuncture, I use cupping, I use lymphatic massage.
Now I don't do all of those every single day.
I feel like I'd be sore. After that.
Right. And and I and I don't do them.
I've kind of figured out over the years, especially like let,
(28:35):
let's just say I have, I injure my shoulder playing pickleball,
right? And so I'm, I'm now struggling
with how do I deal with this? I, I've kind of figured out what
really works for me, like what order, how to space them out.
I do have a cold plunge at home.I do have an infrared sauna at
(28:57):
home. I do have a grounding mat, which
I, I highly encourage people to try that too.
So I do have those things at home and I do regularly do
chiropractic. Whether I'm aching from some
(29:20):
other reason, I just regularly do that.
That's what I choose to do here.Here's the thing I, I, I truly
believe that all of those thingshelp reduce inflammation in our
body. And when we start to really deep
dive into a lot of diseases, notjust a ERD, but other diseases
as well, we see that people thathave specific diseases have a
(29:44):
lot of inflammation in their body.
So the more you do to reduce theinflammation in, in my case with
a ERD, it's extremely helpful. I think patients would find that
who have other diseases as well that create a lot of
inflammation in the body that they will find those things
helpful. So you just have to kind of you,
(30:07):
you have to kind of figure out what works for you.
Look, I, I've talked to a lot ofpatients that don't, aren't
readily open to any of those kind of treatments at all.
And so I just say to them, I, you know, I can only tell you
what works for me. Maybe give it a try.
(30:28):
Maybe it doesn't work. Maybe it does work, right.
The problem with a lot of those treatments is that they're not
covered by insurance. So you can, I mean, I look, I
spend thousands of dollars a year doing some of those
treatments. Now, like I said, I have some of
those things at home, but it it's so there's also that
(30:52):
component of it too, You know, how much can people do that's
not covered by insurance? And truly that is a whole nother
episode and it's in its own right.
You know, we could, we could talk for hours about that
situation too. But so I use a lot of those
tools. I also use, I'm a really firm
(31:14):
believer in supplements. But here's the thing about
supplements. Before you take supplements, you
must discuss with your physicianhow they interact with the meds
that you're taking. Don't just go out there and
start taking supplements like that's the worst thing you could
possibly do. And then also make sure you're
(31:34):
getting your supplements from a reputable source.
They're not. Regulated.
No, absolutely not. And, and from a, you know, from
a quality brand as well, I cringe.
I like, I literally cringe when I hear people say I buy my
(31:55):
supplements on Amazon and I'll tell you why I cringe.
I cringe because you don't know how long those supplements have
been sitting on a shelf in a warehouse somewhere and have
experienced the fluctuations of temperature like you, you, you
have no idea. So.
(32:18):
Yeah, thought about that. I mean, I totally agree with the
reputable brand thing, but I didn't really think about you're
right, The fluctuations in temperature, things like that,
the shipping time, wow. Yeah.
OK. So, you know, like I was, I was
sharing with someone on another podcast last week and it's I'm
(32:41):
in pretty much every decent sizearea that you live in, you're
going to find an apothecary. Your apothecary is going to have
a lot of information. They know a lot and they're
going to be able to help you if that's the path you choose to go
(33:04):
down. And I'm not saying go down that
path and totally put aside the medication, the big pharma
medications. I do both.
I I do both. I take medications to maintain
my disease, but I also do all these other things, including
supplements. And for me personally, it has
(33:26):
allowed me to back off on certain other medications that
mean that I was taken to maintain my disease, which in my
mind is a positive. Of course, of course, you really
want to find like that middle ground where like you said,
you're kind of using alternativetherapies and at the same time
(33:47):
still managing your condition with like Western medicine, as
they say. But I will say I really OK, a
couple things. I love what you said about the
alternative therapies. I think a lot of those are
overlooked. And yes, like you said, they are
expensive as Cus sometimes, but also things like you said, like
(34:08):
the chiropractor, like there's tons of places now that you can
just do like a monthly subscription of like 20 bucks
and go when you need. And then like a cold plunge, you
can fill your bathtub with ice water and try it out that way if
you can't like do that. So I think it's a great option.
And then you said apothecary. And I feel like it sounds like a
(34:29):
cozy video game. You know, you walk in and you're
like, I am just a traveler. I'm looking for looking for
these, these green plants to help me with my pain.
And they they know what they're doing.
Yeah, they do. They do look.
So here's the thing too. I think as we've advanced in the
years, so my, I'm a lot older than you and in, in my
(34:54):
generation, it was like really fancy to have a sauna in your
house. Like if a house had a sauna,
that's kind of wow, because we typically only saw those at like
health spas, right? We got our first sauna back in
(35:15):
2000, I think it was. And it was a lot.
We, it was a lot of money at thetime.
But Fast forward today, we're onour third one.
And while the big ones that you walk in, they're infrared and
they do all the things right andthey have the red light therapy
(35:38):
in them and all this kind of stuff.
While they are still expensive, there are other ways.
I said my husband was a musicianand we have two tour buses, one
is our bus and I have a sauna blanket on that.
So how does that work you? Just get in it, you zip it up,
(35:59):
your head is out, you're laying down and you're getting, it's
the same, it's, it's electric, it's the same.
It heats up to, you know, 150°. But they also have little
portable sauna units now that you can have in your home and
they're just several $100.00. So there's ways to achieve these
things. Now before I had the actual cold
(36:23):
plunge at home, I would just every morning after when I
finished my normal warm shower, I turned the hot off.
I left the cold on blasting and I let it get as cold as it would
and I would just stand under it.I mean, that's how I started it
because I didn't have the cold plunge, right.
But now there's even places you can go We.
(36:46):
Had gyms like now. What's that?
Gyms have them now, like cold plunges and red light therapy.
You're. Right, Red light therapy I was
at, I don't know, a big box likea discount big box store.
I'm not even sure which one it was, but they had a portable
cold plunge that was a couple 100 bucks.
(37:07):
Right. Oh, fun.
So things are becoming more accessible to a broader range of
demographics, which I think is amazing.
Red light. There are reputable red light
units that you can order from Amazon.
(37:27):
Now, you're not gonna be able toget your whole body under there,
right? Whether you hang it on the wall
or whether it's a handheld, but you can use it for certain areas
or instead of thinking that you have to buy 10 panels to cover
your whole body, buy 2, buy one and stand in front of it.
(37:51):
You're still going to reap some benefits from it.
So, and there's also, like you said, like the chiropractic
where you can go to and, and, and have a membership or
whatever. There's red light therapy places
now, there's infrared sauna places now they're popping up
all over. Just think of how nail salons
(38:15):
started to pop up. These places are starting to pop
up. And you know, so it, it's, it's
becoming more accessible to to be able to obtain some of these
and and use them. Yeah, absolutely.
I completely agree. And finding something that is in
your budget kind of like you said, where it's like, yeah, you
don't need to buy like a solar panels worth of red light.
(38:39):
Absolutely. You can just, yeah, like you
said, go on Amazon, maybe do some research, try to find a
reputable brand. And then, yeah, buy one.
See if you feel like, OK, this is this is helping.
I'm going to maybe try to find, you know, the next tier of
what's available to me. But I always love hearing what
people are doing, especially with alternative medicine when
(39:02):
you're kind of using it in tandem with like what your
doctor prescribes. But it's always interesting
because when you are chronicallyI'll, I feel like most of us are
on 456 medications and finding anything where you can be like,
OK, I feel like my condition is being managed by a couple
(39:24):
alternative therapies and a couple of medications.
Like you're just slowly like making sure that your body is
not subjected to a ton of side effects.
And but also, yeah, you need medication sometimes.
But it's so interesting to hear what you're saying and I
appreciate it. I'm so excited.
I'm going to go do some researchafter.
(39:45):
This, there's, there's another tool that I, I use, especially
when I have a flare because the,my flares typically happen at
night. Spring and fall are worse for me
because things are blooming or dying off, right.
And so it's it's, it's truly, it's a.
It's a migraine cap is what it is.
(40:05):
You put it, you leave it in yourfreezer.
It's very pliable. You put it on, but the pressure
and it, it's really because of your sinus cavities and polyps
and things like that, the ice. So I found that those it, that's
a tool for me when I have a flare and I don't know, I think
I got mine off Amazon and I, I keep, I keep multiples in the
(40:29):
freezer because they don't have a long lifetime spanning the of
the cold when you put them on. But again, it's a, it's
something that's affordable. It's something that might be
very helpful to someone that youdon't think about.
Another thing this took me a while to be able to do, but once
(40:49):
I, once I was able to do it, it,it was very helpful.
I would do dry needling and cupping, but that, so the
cupping, I decided to learned todo this like I was having some
issues with joints, which was a,a side effect of one of the
(41:11):
biologics that I was on. And so I was having like with my
knees, I, I, I bought a cupping set and I am able to do that on
my knee, you know, on my thighs,my knees, my calves myself.
Like I said, it's not pleasant to look at because it's it's
(41:32):
very bizarre to sit there and put those suction cups and watch
that skin come up and turn that purple color, right.
But once you get used to doing it, it, you know, it's very
helpful. And I mean, every time I would
go get it done, it's 100 plus dollars.
So that's a lot and it's not covered by insurance.
(41:56):
No, of course not. Right.
Like I said, we could talk a whole lot on that.
I know I've been doing a topicalseries where we kind of get
into, like, things that people like to argue about.
So I would love to do one on, like, insurance.
Like I want to talk to a former insurance agent and just kind of
like, be like, what is this? What are we doing?
(42:17):
How does this work? But yeah, I love that.
And especially with a lot of Eastern medicine, it's so
interesting to kind of see what maybe people in other countries
are doing. So like things like cupping is
super common in other places. But here it's like, like you
said, it's like a little weird. People are like, why are you
(42:38):
doing this? You look like you got attacked
by an octopus. Yeah, No, listen, I remember,
I'm gonna go back probably 15 years ago maybe.
I remember distinctly seeing in one of the rag magazines, you
know, like the US weeklies or something like that, a celebrity
had gone and had cupping done and was walking around LA with a
(43:01):
tank top on. And what are those big marks on
their shoulders? La, la, la.
And I'm like, come on, folks, this is this is our, this is
what someone has chosen to do for their own health.
Like we shouldn't have to explain it.
Like we just shouldn't it. It shouldn't be thought of as
(43:23):
weird. It's what someone has chosen to
do for their health. I mean, I think in general, I
think as a society we could do alittle more of just be like, oh,
interesting and don't like. And move on, right?
Yeah, you don't need to be all judgmental, like, and even like
you said earlier, when you're like, oh, I'm doing XYZ for my
(43:44):
health, for my body, and someone's like, oh, I don't like
that. You're like, OK, well, that's
fine, That's what I'm doing. And we could just all move on
and be like, yeah. We had a problem in in a in one
of the Facebook groups that is aERD specifically where one of
the main admins would ban peoplefrom the group for talking about
(44:10):
non conventional therapies that they used.
Now that has since been kind of that issues been fixed, if you
will, but everyone in that groupalso knows that kind of be
careful how you talk about it. I stay in the group because it's
(44:34):
informative, because we have a lot of information to share with
one another, but we're constantly tiptoeing around
that. And I think that's absolutely
ridiculous that we have to be like that because it's not that
we're saying these treatments are a cure.
We're just saying when someone says I have this issue, I've
(44:58):
tried everything. Can someone please share
something that has helped you that may help me?
We're throwing these things out.And again, we're not saying
they're cure alls. We're not saying they're the
wherewithal and be with all. We're just saying these are some
of the things that helped me with that same issue that you're
(45:18):
having. Maybe you want to try that too.
I I don't know. I that's look, we could get a we
could go on to a whole nother a different conversation about how
society perceives things like that and how, you know, people
are not open to hearing these things that people do to help
(45:40):
themselves and how judgmental people can be about some of
these therapies that are really helpful for some people.
Yeah, I think it's definitely kind of like you said, it could
be a whole thing, but it's it's definitely, I think on one side
there are people who they're like Western medicine is we
don't like that. We will not.
(46:01):
I don't think that people shouldbe getting prescriptions from
doctors. And then there's other people
who are like, I don't want to try any alternative medicines.
All of it's fake and all of it's, you know, it's just
made-up. And you kind of have to meet in
the middle and be like, OK, like, let's talk about this.
What? We're yeah.
And you know, that's a that's a great point because I I've kind
of been on my my soapbox here about the the non conventional
(46:25):
therapies. There's also people out there,
look, read what biologics are, read about them, and people will
say, Oh my God, I can't believe you're putting that in your
body. Here's the thing, I don't have a
choice. Breathing is not optional.
I have to breathe right, Right. And so I don't have a choice.
(46:46):
If I want to live my life to itsfullest with this disease very
well medically managed, I have to take this biologic, right?
And so, I mean, there are tons of people out there, right?
I don't know why you would want to do that.
Well, because I want to, you want to live.
(47:07):
I want to live. But I'm also doing these other
therapies to kind of counterbalance that particular
thing that I'm putting in my body, right?
Like I'm trying to keep my body the healthiest that it possibly
can be while I'm putting this other drug in my body to be able
(47:27):
to live. So there is that whole other
side and that's a whole nother thing.
I mean, there's a lot of diseases out there that people
take medications for that If they didn't take those
medications, they would not live.
I mean, let's just face it, that's the bottom line.
And they get chastised for for taking medications.
But all you can do. I feel like we can just speak
(47:49):
positively about this. We may not change everybody.
We may not change the world's thinking in our lifetime, but
the more that we are open about talking about this and trying to
learn from others and hear both sides of the coin, I think, I
think that's progress. Yeah, agree.
(48:11):
OK, now that we're kind of like,wow, that was like a crazy
conversation. But honestly, I think that
that's super helpful and the listeners are going to love it.
But so we were kind of talking about earlier self advocacy and
you were kind of saying how you've learned a lot about that.
And I guess that is kind of a tool.
So share with me a little bit about that and we can then kind
(48:34):
of wrap up the episode. I did not do for myself early on
what I really am proactive aboutfor patients to do for
themselves. I didn't journal everything that
was going on and when I was given another medication, write
(48:56):
down things that I thought this is odd since I've been taking
this medication, this is happening.
I didn't do that in the beginning.
And you know, I wish I had of because I, I think I probably
would have been a little more quick to get a diagnosis.
I probably could have avoided a whole ton of large amounts of
(49:17):
Prednisone and I could have avoided some of the issues that
that has created in my life. So just as I learned and started
to realize, wow, if I go in armed with my research, go in
armed with my questions, I'm getting a lot farther in the, in
the treatment and management of my disease and in my
(49:41):
relationships with my physicians.
Then if I just go in and go, Oh yeah, it's good.
You know, so I, that was kind ofthe beginning of why I thought,
wow, you know, I don't, people need to really understand the
importance of being your own self advocate, right?
(50:01):
But then Fast forward to I got involved with Allergy Asthma
Network. And so I first got involved with
them by participating in in their Capitol Hill Day, which
happens every May. Oh.
And that's where people, so allergy Asthma Network has a a
lot of diseases under their umbrella, right?
(50:23):
And they are just an amazing source to educate patients, to
educate caregivers of patients. They do a lot of work in getting
a lot of bills passed through legislation, things like getting
epinephrine into schools and youknow, all just really important
(50:48):
legislation that that they advocate for that.
So I, I started out by participating in Capitol Hill
Day and then just kept being involved with them and now I'm
actually on their executive board.
I absolutely love the work that they do and they are an amazing
(51:08):
resource for patients with all types of asthma, allergy, all
kinds of other diseases that fall under that umbrella.
So that's allergyasthmanetwork.org.
I can't stress enough. And you know, so that's just
really where my passion came. And then I got really tired of
(51:33):
not explaining my disease because it was just too, because
from the outside, I look fine. And so people would go, oh, you
just have a cold or you just have allergies or you just have
asthma. No, it's not just you don't put
just in front of any disease, right.
And so I think that lit a fire and I and I got really tired of
(51:55):
going, Yep, just got allergies because it was too difficult to
explain. No one had ever heard about it.
No one really was listening. And I thought, you know what?
I'm not the only one out there with this disease.
And so I'm not going to stop talking about it.
A lot of well known diseases geta lot of attention.
(52:17):
It's the lesser known diseases that don't and they're just as
important and oftentimes just asfatal as some of these other
diseases. And so it just takes people to
talk about them. But the other thing that it does
is it brings people together that have the same disease.
(52:39):
Like I said, I'm in a lot of forums, I speak to a lot of
groups I and this is where we find one level of our support
and it's in those type of surroundings.
And so it just became really passionate to me to, to, to
stand up and talk about it. Yeah, that's amazing.
(53:01):
And yes, find new organizations that promote self advocacy and
allow you to connect with other people and make sure that laws
are being passed are so important.
So I appreciate you bringing up the AAN, right?
Yes. OK, OK, I love that it's the and
Anne instead of. Instead of just, it's Anne.
(53:25):
That's right. That's amazing.
Oh my gosh. And you said that they do a
Capitol Hill event in May. Yes, it's also AA NS 40th
anniversary. So we will be up there to
celebrate the organization, but also to, to continue to do major
work on Capitol Hill. And I, you know, I just, I, it,
(53:52):
it's just a passion. Yes, of course that's amazing.
Oh my gosh, I'm so excited for you.
And like, I feel like during this episode I learned a lot.
I'm really hoping that the listeners learned something as
well because I, I genuinely feellike we covered so many topics
and it's kind of perfect to likeclose it out being like, here is
(54:15):
an organization that if you are struggling with anything under
this umbrella, they can help. There are other.
People like you. Absolutely.
And I also hope that too, if there's patients out or, or
listeners out there that have been struggling with asthma and,
and what allergies, if you will,or nasal polyps and they just
(54:37):
can't quite figure out why they're not getting better.
Maybe this will be like a light bulb where they go, wow, maybe
this is what I've been searchingfor, you know, maybe this is
what I have. And, and, and lastly, what I
want to say about a ER D2 is it's an exhausting disease,
(55:01):
right? It's exhausting because when
you're in the thick of it and it's not controlled, you're not
breathing 100% capacity. Therefore you're constantly
tired and fatigued. Your body's not getting the
oxygen it needs. You tend to isolate yourself
because you just don't have the energy to do the things that you
(55:22):
need to do and it can wear on you mentally.
What I want to say to patients is there is hope out there.
There are so many new drugs right now.
It's just about finding the physician, letting that that
physician, understanding all of your symptoms and putting the
puzzle together. But there is hope.
(55:43):
I mean, there is absolute hope and I don't want people to give
up on that. Oh, what a powerful message.
Thank you. This has been so amazing.
If the listeners would like to maybe connect with you further,
do you have social media or anything like that that you
(56:06):
would like to? And I love for people to reach
out to me. My website is Rhonda B
nelson.com Instagram and Facebook is the same.
And I also, you know, I have a little added extra in that, like
I said, my husband is the lead singer and bass player for
(56:28):
Little River Band and I go out on the road with him quite a
bit. And so I always like to say if
anybody's ever had a Little River Band concert, please ask
one of our crew members or the band after the show if I'm
there. Because if I am, I would love to
meet people. I love to meet people that I've,
(56:49):
that have heard me on podcasts or have reached out to me
through social media or on my website.
I just, I, I love to connect. And so I would just say that as
well because I, this is the band's 50th anniversary, so I'm
out on the road more than normaland I would love to meet people.
Oh my goodness, that's amazing. Well, yes, great.
(57:12):
Well, then, yeah. Listeners, you can find her on
social media and in person if you want to go to a fun concert.
That's right. That's right.
Well, Rhonda, thank you so much for being on the podcast.
Genuinely, this was so fun and informative.
Oh, it was really a pleasure. I, I just enjoy so much when
things are just so easy and theyflow well and you know, it,
(57:35):
it's, it just has been a really great podcast.
I really appreciate the opportunity.
Yay. OK, Well listener, that is all
we have for you. Otherwise, I'm Clark, this is
Rhonda, and this has been chronically the sickest podcast
you know. That's all folks.
(57:58):
Thank you so much for listening.If you like this episode, click
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(58:27):
Disclaimer, this is a conversational podcast and while
we may share a diagnosis journey, symptoms, and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
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