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