October 5, 2022 • 29 mins
Nyobie grew up knowing there was something different about her body. As a young woman, she was plagued by unexplained symptoms doctors initially dismissed as part of puberty. But persistent pain and swelling in her arms and legs were just the beginning of her battle. After 19 years of being silenced and misled, Nyobie finally found a life-changing doctor - and diagnosis.
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****** SPOILER ALERT BELOW ******
If you’re looking for more information on Lupus, you can check out the Lupus Foundation of America by heading to Lupus.org. You can also learn more about Nyobie Gordon-Rick and the work of National Health Educator Leticia Ocaña.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
The way, I would describe it as like an elephant
setting on you. It was debilitating, and when you're expressing
that something is wrong and you're afraid and people aren't listening,
you don't really know what to do. There really was
no one else to turn to. So I suffered in
silence for a long time. Their doctor doesn't believe them,
(00:27):
They've been told it's in their head, the symptoms, because
they can be vague again, they come and go. It
can take a huge emotional toll. That's living in a
real nightmare. That's a horror movie happening in real life.
(00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease even doctors
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:12):
are their stories. I'm Lauren Bright Pacheco, and this is symptomatic.
(01:33):
When you first meet niobe Rix, you immediately notice her subdued,
approachable demeanor. I've heard that a lot lately, until you
get her talking about music, especially throwback songs from the
eighties and nineties. Her friends and family even used to
call her the human Radio because she would know the
lyrics to every song that came on. Her favorite snacks
(01:55):
are Dipsy doodles and David sunflower seeds. She absolutely loves
buttercrunch cookies but definitely doesn't mind if you have the
last one. No, not at all. But after you see
her kindness and love of music and baking, you also
quickly pick up on a kind of determined strength underneath
it all. Here's her husband, Kevin. Niobe is strong, she
(02:19):
has a strong will, and she just has a big heart.
Like even in the midst of everything that she's going through,
she considers others. When Naobe turned thirteen, yep, just thirteen,
she was going through the usual prepubescent teenage changes, but
noticed something wasn't right. It started with irregular periods and
(02:46):
pain and inflammation and swelling in my extremities. I was
less active. You're a thirteen year old girl, you're active,
you know, going out, playing sports. All of those things
ceased to exist for me because I was just in
too much aim to participate. The symptoms were far from
normal and sadly far from being properly diagnosed. Naobe knew
(03:10):
something wasn't right going through puberty. Didn't explain the pain
and swelling in her arms and legs. This was something
very different, something scary. Was there someone in your life
that you shared those concerns with and what was the reaction?
I told my mom and we went to the doctor. Um,
(03:32):
I was diagnosed with anemia. So they said that, you know,
it's probably growing pains and having anemia, could you know,
lower your eye in so um my mother listened to
the doctor instead of me. That must have been so
difficult because you begin to feel like nobody believes you. Yeah, yeah,
you know. The symptoms got worse over time, and every
(03:56):
time that I reported a new symptom, it always revered
it back to the same thing. Well, it's hormonal changes
in your body, and you're young, and you know it'll
go away eventually. But the symptoms that I developed just
weren't what you would consider normal for puberty. I started
(04:18):
having pain throughout my entire body. I had partial paralysis
from the waist down, and I had numbness and tingling
and my fingers and toes. It started becoming so overwhelming
for thirteen year old niobe that I got in the
way of her being a kid. She was no longer
(04:39):
able to do the simple things like hanging out with
her friends. The treatments weren't working, so doubt over her
anemia diagnosis started to creep in. I stayed home a
lot because um I didn't want to go anywhere. I
didn't make plans because I was afraid that if I
made plans with my friends, I would suddenly have to cancel.
(05:00):
Aren't noticed. I never knew how I was going to
feel on a day to day basis. Was there an
exact moment for you when you just had the realization
that this isn't normal, no matter what I'm being told.
I had various episodes of paralysis, but this particular episode,
(05:21):
I couldn't feel anything from the waist down, and I
was terrified of what was going on with me. I
begged my mother. I said, I said, Mommy, please, there
there's something wrong. I need to go to the doctor.
And so she called an ambulance because she couldn't pick
me up and I couldn't stand on my own. And
(05:41):
we got to the hospital. The nurse took a needle
and she poked my toes until they bled, they did
no testing on me, and they thought that it was
psychological and all in my head. But that's when I
knew there is something wrong and if somebody doesn't listen
to me, it can get really bad. That must have
(06:01):
been terrifying. It was. And when you're expressing that something
is wrong and you're afraid and people aren't listening, you
don't really know what to do. I just I didn't
know who to turn to, because there really was no
one else to turn to. What in your mind did
you think was happening in your own body? I didn't know.
(06:24):
I honestly didn't know. I was trying to trust the
doctors to help me figure it out. I just knew
that whatever was happening wasn't normal, and the symptoms would
come and go, so there was really no way for
me to categorize what it was. She was caught in
a frustrating cycle of doctors diagnosing her symptoms, even as
(06:46):
her mother continued to place faith in their medical expertise,
all while Naobe started to internalize it, questioning herself, even
silencing herself because using her voice didn't seem to end
in relief, only frustration. After all, the doctors had found
what they felt were the answers to her problems. I
(07:07):
stopped telling anybody about my symptoms because I felt that
nobody was going to listen and that my concerns would
be disregarded. So I suffered in silence for a long time,
not just a long time ten years. She suffered in
silence for ten years as this mystery disease continued to
(07:29):
wreak havoc on her body and her life. So when
did you go back to the doctors? At what point
did you realize that you couldn't handle this on your
own anymore? How old were you? I went back in
my mid twenties, just before I had my first son,
because I noticed some things. These were new things, and
(07:51):
I got the same treatment. I was misdiagnosed with a
variety of different diseases. Just throw some of those misdiagnoses
at ring worm was one of them. Um, possible leukemia
was another one. Arthritis for someone my age, Oh my gosh,
go back to just even possible leukemia. That must have
(08:16):
weighed so heavily on you, being a young about to
become a young mom. Yeah it was. It was stressful,
and I went for the testing suggested by the doctor
and when it came back that it wasn't leukemi, and
they still had no idea what was going on. Um,
(08:36):
you know, you just you go back to the drawing lord.
Still no true diagnosis that explains how she's feeling. This
mysterious illness keeps eluding doctors while the symptoms keep getting worse.
For Niobe, when describing the pain, she hesitates a bit
before answering, struggling to make herself remember such a difficult
(08:57):
time and so it would it it? It? It varied,
but the way I would describe it as like an
elephant sitting on you, it was. It was debilitating. There
were days that I could not get out of bed.
Nyobe's husband, Kevin, remembers those days vividly. That's when he
(09:21):
knew things had fallen to a new low and they
needed to find an answer. That's not normal for anybody, right,
even in our most I would say, withdrawn states, or
our most exhausted states, right, most people can find a
way to make it up and out of bed and
you know, into a shower, into the kitchen. She couldn't,
(09:44):
like physically, just could not at all. That's pretty much
where it got real for everybody. It wasn't just oh,
there's something wrong and you're gonna get treated. It's like, oh,
this thing is here, and we have to deal with
this way f really than anything we even anticipated. That
was the realist moment for the whole family. All of
(10:09):
this piled onto Naobe and her family over the next
few years, but even though there were some bright moments,
like the birth of their second child, a daughter, much
of their day to day lives was overshadowed by her illness.
Her symptoms came back even stronger than before. I had
my daughter in December of two thousand and seven, and
(10:31):
by early January of two thousand and nine, I felt
like my body was breaking down on me. I had
developed a rash that seemed to last for months. What
was the rash like and how did it present? Initially
I had it across the bridge of my nose and
(10:54):
it was kind of just red and bumpy. But then
I developed rashes on other parts of my by you,
like my arms and my legs, and I had gone
to the doctor and I showed them and the doctor
wasn't sure what it was, and he referred me to
a dermatologist who once again told me I had ring work.
(11:16):
Yet again, Naobe finds herself in the same place as before,
worsening symptoms and no closer to a diagnosis. She's trying
her best as a young mom to be present for
her kids. Naobe reaches a breaking point. I had a
had a scary episode. I was driving and I went
(11:39):
to get to Starnwell and I couldn't close my fist
around it. I didn't really know what to do. I
drove myself to the emergency room using my knees. That's
(12:01):
That's one of those ones that it's tough to revisit
because just just think about the nature of that in general, right,
not being able to use any extremity of your body
to do something as simple as drive. That's scary enough
in itself, and then to be also having something else
(12:22):
happened to you on the inside while that thing is
also happening to you. That's living a real nightmare. That's
a horror movie happening in real life. So um trauma
is the only word I could probably use for that.
That really scared me because if I had my kids
in the car, you know, anything could have happened. And
(12:44):
I knew at that point that I needed to figure
out what was going on with me. I could no
longer ignore what I was going through. I had to
find answers. We'll be right back with some amatic, a
medical mystery podcast. Now back to Symptomatic, a medical mystery podcast.
(13:13):
I needed to figure out how to find out what
was going on with me. Naobe Rix had been battling
a puzzling illness for almost two decades, more than half
of her life, without any answers as to what it
is or treatments that seemed to help her. Symptoms debilitating pain,
(13:34):
swelling and exhaustion throughout her body, temporary partial paralysis and
loss of motor control, rashes coming and going on different
parts of her body. But then she had a breakthrough.
It was my kind of cologists who first noticed that
(13:56):
there was something wrong. I went to her from my
yearly checkup and this particular year, she got the test
results back and they were extremely abnormal. She did what
they call a complete blood count, which is CBC, and
my platelet count was lower than it should be. So
she called me. She told me she wanted to redo
(14:18):
the test just in case there was an issue with
the lab or something, and so she redid the test
and the test results were lower than they were the
first time. She said, I'm gonna refer you to a doctor,
but I want to repeat the test, so by the
time you go see the doctor will have new results
and the test results are lower than they were the
first two times, and so now there's a real concern.
(14:40):
She also referred me to a hematologist. They wanted to
check and make sure there weren't any blood issues and
things like that. So I'm going through this battery of testing.
Going back to the drawing board through a series of
tests was something Mayobi was very used to at this point,
and it happened so many times over the past two decades,
all resulting in the same thing. No diagnosis that felt correct,
(15:05):
no treatments that worked, no doctors taking her seriously. But
this time, this time felt different. I don't know what's
wrong with me, but I go and see the doctor
that she referred me to, ironically, a black female doctor
who asked all the questions no other doctor had asked me.
I finally felt like I had somebody who was listening
(15:27):
to me, someone who was invested in finding out what
was wrong with me, who cared as much about my
health as I did. She took into account, you know,
my family history, as opposed to feeling like, Okay, this
is just another round of b S and I'm going
to get the same results. I felt different speaking with
(15:48):
this doctor, and not only because you know, she looks
like me, but because she asked questions no other doctor
had ever asked. A light at the end of the
tunnel is starting to shine or her on her journey
to finding her diagnosis, some real tangible hope, to finally
getting some answers, taking her symptoms and experiences and getting
(16:10):
a sense of the real picture. Was this doctor finally
putting these pieces into the right puzzle. Naobi heads to
her hematologists to hopefully get some answers. And so I
go into his office after the physical exam and we
sit down and he's going through the paperwork and he goes, okay,
so I have Olivia test results. He says, I see
you've tested positive philopus And I go excuse me. He goes, yeah,
(16:38):
it's it's positive. And I'm looking at him like a
deer in headlights, like, so, what are you saying to me?
And I think he realizes that I didn't know, and
he goes, okay, So let me explain to you what
this is, because he's talking to me like I know.
(17:00):
After nearly two decades, Naobe finally has an answer, a
name to the unknown enemy she's been battling for most
her life. So what is lupus? To help us understand,
here is Lecticia gn the manager of Health Education and
Hispanic Outreach for the Lupus Foundation of America. What we
(17:22):
know is systemic lupus arithmatosis is a chronic automated disease.
This means it's lifelong. And in lupus, the immune system
which is supposed to protect us against foreign invaders like
bacteria and viruses, in lupus, it doesn't work that way. Instead,
the immune system attacks the healthy tissue of the individual
(17:44):
and this causes inflammation, pain, and damage. And lupus can
affect a person's joints, skin, the kidneys, the heart, the blood,
the brain, among many other systems. So it's very cruel
disease and very diverse and how it can affect a person.
(18:05):
And why did it take so long for Naote to
get a diagnosis? Is she an outlier for the lupus
community or is this commonplace? A lupus diagnosis isn't easy,
and there's several reasons for that. The science and symptoms
can appear and disappear, and change over time in the person.
They vary from person to person depending on which body
(18:27):
part it's affecting. The signs and symptoms can mimic those
found in other illnesses such as rheumat arthritis, fibramyalgia, and
healthcare providers may not be familiar with lupus and symptoms
and not be able to recognize them. And also, there's
no definitive test for lupus. All these things pose a
challenge to a prompt diagnosis. Yeah, I felt some relief,
(18:54):
but then I also felt scared because now what Yes,
I know what this is. I finally have an answer.
Nineteen years later, I have an answer, But now what
do I do? What's next? Because again I had all
of these new symptoms coming about? Is this the reason
why I literally didn't know what to do, what to expect?
(19:18):
You know what was going to happen. So we're still
relatively young, and you know, you've got all these hopes
and dreams, and you think life is going to be
this one thing and then bam, it just turned into
something completely different, and you have to make a hard left,
whether you're prepared to or not, and I I was
not prepared to make the hard left at that moment.
(19:39):
Relief and fear, that's what's running through their heads. But
this is very much the start of her battle and
journey with lupus. Now, Niobe is referred to a rheumatologist
to find out just how far her lupus has progressed
and how she and Kevin must change their lives to
(20:00):
with it. He determined that the lupus was affecting my
kidneys as well as my brain. Not only do I
have symptomatic lupus, but I have lupus nephritis, which is
affecting my kidneys as well as cn S lupus, which
is affecting my nervous system my brain, which kind of
explained some of my behavioral issues that I, you know,
(20:23):
I wasn't really aware of. Lupus was overwhelming her body.
You would think that having a proper diagnosis would have
brought more relief and immediate treatment, but things would get
much worse for her before they would get better. Depression, anxiety.
(20:44):
I definitely didn't feel like myself. I had cognitive issues,
so I was very forgetful or confused people repeating things
to me for me to understand them. I would forget
basic words. I started forgetting names, and it was really
scary for me because I was talking to my niece
and I could not remember her name, someone I've known
(21:10):
since birth, and I could not remember her name. And
it made me scared because how long has this been
going on that I may be unaware of that people
around me may have noticed but didn't say anything. There
were these moments where I'm like, Okay, is she gonna
forget us? Is it gonna get that bad? You know,
(21:32):
because you don't know everything speculative right because it's new
and you're navigating the waters the best you can and
you're not always getting clear answers. So it's like, how
far does this thing go? Because it's not the same
for everybody, So where does this land for us? And
then what does that look like in terms of care
and treatment going forward? Are we even prepared for this?
(21:55):
You know? With the symptoms getting worse by the month,
Niobe started reverting back to her days of suffering in silence.
The strain on her family and support network crew her
symptoms were so bad that there were days that she
couldn't even get out of bed, let alone be there
for her kids or husband and the way she truly wanted.
(22:18):
We all had to learn that there are levels to
this disease. It's not one size fits all. There are
days where you can see, you know she wants to
do things. You know she wants to be active, or
she may be in a mood to do something as
simple as bake cookies, but there's no energy for it
because she's completely fatigued. The biggest misconception is, and it's
(22:43):
very painful for people, is that people with lupas will
look like they have lupus. The symptoms, you know, you
cannot see them, and so they will be fatigue, they
will be in pain, and when they express this, they're
not believed. No one knows us better than Niobe. Over
half of her life has been spent searching for answers
(23:05):
to questions that people kept ignoring or downplaying. With my mom.
She she apologized for not knowing, and I didn't falter
her because again, you're a single parent, you're raising you know,
three girls, you're working, and you're doing what you can.
(23:26):
You're doing everything to the best of your ability. And
she relied on the doctors that she took me to
to advise her on what was going on with me.
I never held any of that against her. Yeah, So,
as you can imagine, it can take a huge emotional toll.
We've spoken with people who say their doctor doesn't believe them.
(23:49):
They've been told it's in their head, the symptoms because
they can be vague. Again, they come and go, and
the family members don't know about lupus, may not have
heard about lupus or no anyone else. And now you're
adding that stress right to the physical toll that lucas
takes on people. So that was a diagnosis that was
(24:14):
nineteen years in the making. How many doctors do you
figure you saw in that time period, anywhere from eight
to twelve, and that includes specialists. What do you think
contributed to that? Was it your age, your gender? You know?
Was it a race thing? Looking back now, I definitely
(24:37):
think that it had a lot to do with my
age in my race. Being young, people just don't take
you seriously, and when you come from low income families,
they just disregard a lot of the things that you
have to say because either you're making it up, or
if you do have something, you can afford the treatment.
So you know why even bother she's had to experience
(25:01):
mistrust and disloyalty from people and entities that should have
protected her, should have cared for her, should have been
trying to alleviate some of what she was experiencing. So
there's that part that she's going to have to carry
with her. It's now been twelve years since her diagnosis,
(25:26):
her kids are teenagers, and Naobe works with the Lupus
Foundation of America to raise awareness for the disease that
sent her on an emotional and physical roller coaster. So
now my lucas is manageable. I'm not in remission, so
my disease so active, but I've been able to find
the right combination of medications that helped me maintain the
(25:51):
disease activity until prayerfully, it goes into remission or just
goes away and never comes back. You know, she couldn't
even imagine dancing because two minutes of dancing was ten
days of pain. But now she can. So as we
see her progress based on getting proper treatment, getting a
(26:13):
proper care, getting proper medication, becoming more active the future
looks bright for Niobe and for the family as well.
You know, grandkids will be able to dance with grandma
at some point, right, So that's a pretty cool thing
to imagine when not that long ago that wasn't something
(26:35):
that would have been a thought of ours. What is
truly amazing about Naobe is her positivity and determination to
use her story to help other people. There was very
little sense of animosity towards specific people who made this
journey more difficult. There was very little feeling of giving up,
(26:56):
always just putting one foot in front of the other
with a sense of person self belief. Yes, yes, her
loopy's as they call each other. Uh man, she's like
a big deal. Like you know, we go to the
walks or to the events and they light up when
they see her and it's hugs and oh man. Yeah,
she's like the popular kid in the loopy school for real,
(27:20):
big advocate. She's always pushing forward. She's not afraid to
speak out against the things that are being done wrong.
She shares any any information she gets and goes right
to the l f A so she can help other
people who are dealing with what she's dealing with. She
communicates with people from all over the country in the
world that she's never even met, but she treats them
(27:43):
like friends and like family because she understands what they're
dealing with. What I always say is this, be your
own advocate. To advocate for yourself is very important. I
also suggest that anyone who thinks that they might have
lupus or experience symptoms of lupus let your doctor know
(28:05):
and that they can always get more information on lupus
at lupas dot org. For nineteen years, Naobie Rick suffered
with ever changing symptoms from a mystery illness, swelling and
pain in her arms and legs, temporary partial paralysis at times,
aches all over her body to the point she couldn't
get out of bed. She persisted through doctors that never
(28:29):
seemed to fully understand her suffering, and when she was
finally diagnosed with lupus, her symptoms became worse, almost stabilitating.
But luckily, with the support of her family and new doctor,
she was able to find a set of treatments to
manage her symptoms, a set of treatments that allows her
to get back up and dance to nineties R and
(28:50):
B just like she did as a kid. I'm Naobi
Ricks and for nineteen years I struggled with a disease
that was misdiagnosed. Yeah. To find out more information, visit
the Lupus Foundation of America at lupus dot org. Symptomatic
a Medical Mystery Podcast is an original podcast from I
(29:12):
Heart Radio. Are shows hosted by me Lauren Bright Pacheco.
Executive producers are Matt Romano and myself. Our EP of
post production is James Foster. Our producers are Crra Kaiser
and John Irwin.
The way, I would describe it as like an elephant
setting on you. It was debilitating, and when you're expressing
that something is wrong and you're afraid and people aren't listening,
you don't really know what to do. There really was
no one else to turn to. So I suffered in
silence for a long time. Their doctor doesn't believe them,
(00:27):
They've been told it's in their head, the symptoms, because
they can be vague again, they come and go. It
can take a huge emotional toll. That's living in a
real nightmare. That's a horror movie happening in real life.
(00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease even doctors
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:12):
are their stories. I'm Lauren Bright Pacheco, and this is symptomatic.
(01:33):
When you first meet niobe Rix, you immediately notice her subdued,
approachable demeanor. I've heard that a lot lately, until you
get her talking about music, especially throwback songs from the
eighties and nineties. Her friends and family even used to
call her the human Radio because she would know the
lyrics to every song that came on. Her favorite snacks
(01:55):
are Dipsy doodles and David sunflower seeds. She absolutely loves
buttercrunch cookies but definitely doesn't mind if you have the
last one. No, not at all. But after you see
her kindness and love of music and baking, you also
quickly pick up on a kind of determined strength underneath
it all. Here's her husband, Kevin. Niobe is strong, she
(02:19):
has a strong will, and she just has a big heart.
Like even in the midst of everything that she's going through,
she considers others. When Naobe turned thirteen, yep, just thirteen,
she was going through the usual prepubescent teenage changes, but
noticed something wasn't right. It started with irregular periods and
(02:46):
pain and inflammation and swelling in my extremities. I was
less active. You're a thirteen year old girl, you're active,
you know, going out, playing sports. All of those things
ceased to exist for me because I was just in
too much aim to participate. The symptoms were far from
normal and sadly far from being properly diagnosed. Naobe knew
(03:10):
something wasn't right going through puberty. Didn't explain the pain
and swelling in her arms and legs. This was something
very different, something scary. Was there someone in your life
that you shared those concerns with and what was the reaction?
I told my mom and we went to the doctor. Um,
(03:32):
I was diagnosed with anemia. So they said that, you know,
it's probably growing pains and having anemia, could you know,
lower your eye in so um my mother listened to
the doctor instead of me. That must have been so
difficult because you begin to feel like nobody believes you. Yeah, yeah,
you know. The symptoms got worse over time, and every
(03:56):
time that I reported a new symptom, it always revered
it back to the same thing. Well, it's hormonal changes
in your body, and you're young, and you know it'll
go away eventually. But the symptoms that I developed just
weren't what you would consider normal for puberty. I started
(04:18):
having pain throughout my entire body. I had partial paralysis
from the waist down, and I had numbness and tingling
and my fingers and toes. It started becoming so overwhelming
for thirteen year old niobe that I got in the
way of her being a kid. She was no longer
(04:39):
able to do the simple things like hanging out with
her friends. The treatments weren't working, so doubt over her
anemia diagnosis started to creep in. I stayed home a
lot because um I didn't want to go anywhere. I
didn't make plans because I was afraid that if I
made plans with my friends, I would suddenly have to cancel.
(05:00):
Aren't noticed. I never knew how I was going to
feel on a day to day basis. Was there an
exact moment for you when you just had the realization
that this isn't normal, no matter what I'm being told.
I had various episodes of paralysis, but this particular episode,
(05:21):
I couldn't feel anything from the waist down, and I
was terrified of what was going on with me. I
begged my mother. I said, I said, Mommy, please, there
there's something wrong. I need to go to the doctor.
And so she called an ambulance because she couldn't pick
me up and I couldn't stand on my own. And
(05:41):
we got to the hospital. The nurse took a needle
and she poked my toes until they bled, they did
no testing on me, and they thought that it was
psychological and all in my head. But that's when I
knew there is something wrong and if somebody doesn't listen
to me, it can get really bad. That must have
(06:01):
been terrifying. It was. And when you're expressing that something
is wrong and you're afraid and people aren't listening, you
don't really know what to do. I just I didn't
know who to turn to, because there really was no
one else to turn to. What in your mind did
you think was happening in your own body? I didn't know.
(06:24):
I honestly didn't know. I was trying to trust the
doctors to help me figure it out. I just knew
that whatever was happening wasn't normal, and the symptoms would
come and go, so there was really no way for
me to categorize what it was. She was caught in
a frustrating cycle of doctors diagnosing her symptoms, even as
(06:46):
her mother continued to place faith in their medical expertise,
all while Naobe started to internalize it, questioning herself, even
silencing herself because using her voice didn't seem to end
in relief, only frustration. After all, the doctors had found
what they felt were the answers to her problems. I
(07:07):
stopped telling anybody about my symptoms because I felt that
nobody was going to listen and that my concerns would
be disregarded. So I suffered in silence for a long time,
not just a long time ten years. She suffered in
silence for ten years as this mystery disease continued to
(07:29):
wreak havoc on her body and her life. So when
did you go back to the doctors? At what point
did you realize that you couldn't handle this on your
own anymore? How old were you? I went back in
my mid twenties, just before I had my first son,
because I noticed some things. These were new things, and
(07:51):
I got the same treatment. I was misdiagnosed with a
variety of different diseases. Just throw some of those misdiagnoses
at ring worm was one of them. Um, possible leukemia
was another one. Arthritis for someone my age, Oh my gosh,
go back to just even possible leukemia. That must have
(08:16):
weighed so heavily on you, being a young about to
become a young mom. Yeah it was. It was stressful,
and I went for the testing suggested by the doctor
and when it came back that it wasn't leukemi, and
they still had no idea what was going on. Um,
(08:36):
you know, you just you go back to the drawing lord.
Still no true diagnosis that explains how she's feeling. This
mysterious illness keeps eluding doctors while the symptoms keep getting worse.
For Niobe, when describing the pain, she hesitates a bit
before answering, struggling to make herself remember such a difficult
(08:57):
time and so it would it it? It? It varied,
but the way I would describe it as like an
elephant sitting on you, it was. It was debilitating. There
were days that I could not get out of bed.
Nyobe's husband, Kevin, remembers those days vividly. That's when he
(09:21):
knew things had fallen to a new low and they
needed to find an answer. That's not normal for anybody, right,
even in our most I would say, withdrawn states, or
our most exhausted states, right, most people can find a
way to make it up and out of bed and
you know, into a shower, into the kitchen. She couldn't,
(09:44):
like physically, just could not at all. That's pretty much
where it got real for everybody. It wasn't just oh,
there's something wrong and you're gonna get treated. It's like, oh,
this thing is here, and we have to deal with
this way f really than anything we even anticipated. That
was the realist moment for the whole family. All of
(10:09):
this piled onto Naobe and her family over the next
few years, but even though there were some bright moments,
like the birth of their second child, a daughter, much
of their day to day lives was overshadowed by her illness.
Her symptoms came back even stronger than before. I had
my daughter in December of two thousand and seven, and
(10:31):
by early January of two thousand and nine, I felt
like my body was breaking down on me. I had
developed a rash that seemed to last for months. What
was the rash like and how did it present? Initially
I had it across the bridge of my nose and
(10:54):
it was kind of just red and bumpy. But then
I developed rashes on other parts of my by you,
like my arms and my legs, and I had gone
to the doctor and I showed them and the doctor
wasn't sure what it was, and he referred me to
a dermatologist who once again told me I had ring work.
(11:16):
Yet again, Naobe finds herself in the same place as before,
worsening symptoms and no closer to a diagnosis. She's trying
her best as a young mom to be present for
her kids. Naobe reaches a breaking point. I had a
had a scary episode. I was driving and I went
(11:39):
to get to Starnwell and I couldn't close my fist
around it. I didn't really know what to do. I
drove myself to the emergency room using my knees. That's
(12:01):
That's one of those ones that it's tough to revisit
because just just think about the nature of that in general, right,
not being able to use any extremity of your body
to do something as simple as drive. That's scary enough
in itself, and then to be also having something else
(12:22):
happened to you on the inside while that thing is
also happening to you. That's living a real nightmare. That's
a horror movie happening in real life. So um trauma
is the only word I could probably use for that.
That really scared me because if I had my kids
in the car, you know, anything could have happened. And
(12:44):
I knew at that point that I needed to figure
out what was going on with me. I could no
longer ignore what I was going through. I had to
find answers. We'll be right back with some amatic, a
medical mystery podcast. Now back to Symptomatic, a medical mystery podcast.
(13:13):
I needed to figure out how to find out what
was going on with me. Naobe Rix had been battling
a puzzling illness for almost two decades, more than half
of her life, without any answers as to what it
is or treatments that seemed to help her. Symptoms debilitating pain,
(13:34):
swelling and exhaustion throughout her body, temporary partial paralysis and
loss of motor control, rashes coming and going on different
parts of her body. But then she had a breakthrough.
It was my kind of cologists who first noticed that
(13:56):
there was something wrong. I went to her from my
yearly checkup and this particular year, she got the test
results back and they were extremely abnormal. She did what
they call a complete blood count, which is CBC, and
my platelet count was lower than it should be. So
she called me. She told me she wanted to redo
(14:18):
the test just in case there was an issue with
the lab or something, and so she redid the test
and the test results were lower than they were the
first time. She said, I'm gonna refer you to a doctor,
but I want to repeat the test, so by the
time you go see the doctor will have new results
and the test results are lower than they were the
first two times, and so now there's a real concern.
(14:40):
She also referred me to a hematologist. They wanted to
check and make sure there weren't any blood issues and
things like that. So I'm going through this battery of testing.
Going back to the drawing board through a series of
tests was something Mayobi was very used to at this point,
and it happened so many times over the past two decades,
all resulting in the same thing. No diagnosis that felt correct,
(15:05):
no treatments that worked, no doctors taking her seriously. But
this time, this time felt different. I don't know what's
wrong with me, but I go and see the doctor
that she referred me to, ironically, a black female doctor
who asked all the questions no other doctor had asked me.
I finally felt like I had somebody who was listening
(15:27):
to me, someone who was invested in finding out what
was wrong with me, who cared as much about my
health as I did. She took into account, you know,
my family history, as opposed to feeling like, Okay, this
is just another round of b S and I'm going
to get the same results. I felt different speaking with
(15:48):
this doctor, and not only because you know, she looks
like me, but because she asked questions no other doctor
had ever asked. A light at the end of the
tunnel is starting to shine or her on her journey
to finding her diagnosis, some real tangible hope, to finally
getting some answers, taking her symptoms and experiences and getting
(16:10):
a sense of the real picture. Was this doctor finally
putting these pieces into the right puzzle. Naobi heads to
her hematologists to hopefully get some answers. And so I
go into his office after the physical exam and we
sit down and he's going through the paperwork and he goes, okay,
so I have Olivia test results. He says, I see
you've tested positive philopus And I go excuse me. He goes, yeah,
(16:38):
it's it's positive. And I'm looking at him like a
deer in headlights, like, so, what are you saying to me?
And I think he realizes that I didn't know, and
he goes, okay, So let me explain to you what
this is, because he's talking to me like I know.
(17:00):
After nearly two decades, Naobe finally has an answer, a
name to the unknown enemy she's been battling for most
her life. So what is lupus? To help us understand,
here is Lecticia gn the manager of Health Education and
Hispanic Outreach for the Lupus Foundation of America. What we
(17:22):
know is systemic lupus arithmatosis is a chronic automated disease.
This means it's lifelong. And in lupus, the immune system
which is supposed to protect us against foreign invaders like
bacteria and viruses, in lupus, it doesn't work that way. Instead,
the immune system attacks the healthy tissue of the individual
(17:44):
and this causes inflammation, pain, and damage. And lupus can
affect a person's joints, skin, the kidneys, the heart, the blood,
the brain, among many other systems. So it's very cruel
disease and very diverse and how it can affect a person.
(18:05):
And why did it take so long for Naote to
get a diagnosis? Is she an outlier for the lupus
community or is this commonplace? A lupus diagnosis isn't easy,
and there's several reasons for that. The science and symptoms
can appear and disappear, and change over time in the person.
They vary from person to person depending on which body
(18:27):
part it's affecting. The signs and symptoms can mimic those
found in other illnesses such as rheumat arthritis, fibramyalgia, and
healthcare providers may not be familiar with lupus and symptoms
and not be able to recognize them. And also, there's
no definitive test for lupus. All these things pose a
challenge to a prompt diagnosis. Yeah, I felt some relief,
(18:54):
but then I also felt scared because now what Yes,
I know what this is. I finally have an answer.
Nineteen years later, I have an answer, But now what
do I do? What's next? Because again I had all
of these new symptoms coming about? Is this the reason
why I literally didn't know what to do, what to expect?
(19:18):
You know what was going to happen. So we're still
relatively young, and you know, you've got all these hopes
and dreams, and you think life is going to be
this one thing and then bam, it just turned into
something completely different, and you have to make a hard left,
whether you're prepared to or not, and I I was
not prepared to make the hard left at that moment.
(19:39):
Relief and fear, that's what's running through their heads. But
this is very much the start of her battle and
journey with lupus. Now, Niobe is referred to a rheumatologist
to find out just how far her lupus has progressed
and how she and Kevin must change their lives to
(20:00):
with it. He determined that the lupus was affecting my
kidneys as well as my brain. Not only do I
have symptomatic lupus, but I have lupus nephritis, which is
affecting my kidneys as well as cn S lupus, which
is affecting my nervous system my brain, which kind of
explained some of my behavioral issues that I, you know,
(20:23):
I wasn't really aware of. Lupus was overwhelming her body.
You would think that having a proper diagnosis would have
brought more relief and immediate treatment, but things would get
much worse for her before they would get better. Depression, anxiety.
(20:44):
I definitely didn't feel like myself. I had cognitive issues,
so I was very forgetful or confused people repeating things
to me for me to understand them. I would forget
basic words. I started forgetting names, and it was really
scary for me because I was talking to my niece
and I could not remember her name, someone I've known
(21:10):
since birth, and I could not remember her name. And
it made me scared because how long has this been
going on that I may be unaware of that people
around me may have noticed but didn't say anything. There
were these moments where I'm like, Okay, is she gonna
forget us? Is it gonna get that bad? You know,
(21:32):
because you don't know everything speculative right because it's new
and you're navigating the waters the best you can and
you're not always getting clear answers. So it's like, how
far does this thing go? Because it's not the same
for everybody, So where does this land for us? And
then what does that look like in terms of care
and treatment going forward? Are we even prepared for this?
(21:55):
You know? With the symptoms getting worse by the month,
Niobe started reverting back to her days of suffering in silence.
The strain on her family and support network crew her
symptoms were so bad that there were days that she
couldn't even get out of bed, let alone be there
for her kids or husband and the way she truly wanted.
(22:18):
We all had to learn that there are levels to
this disease. It's not one size fits all. There are
days where you can see, you know she wants to
do things. You know she wants to be active, or
she may be in a mood to do something as
simple as bake cookies, but there's no energy for it
because she's completely fatigued. The biggest misconception is, and it's
(22:43):
very painful for people, is that people with lupas will
look like they have lupus. The symptoms, you know, you
cannot see them, and so they will be fatigue, they
will be in pain, and when they express this, they're
not believed. No one knows us better than Niobe. Over
half of her life has been spent searching for answers
(23:05):
to questions that people kept ignoring or downplaying. With my mom.
She she apologized for not knowing, and I didn't falter
her because again, you're a single parent, you're raising you know,
three girls, you're working, and you're doing what you can.
(23:26):
You're doing everything to the best of your ability. And
she relied on the doctors that she took me to
to advise her on what was going on with me.
I never held any of that against her. Yeah, So,
as you can imagine, it can take a huge emotional toll.
We've spoken with people who say their doctor doesn't believe them.
(23:49):
They've been told it's in their head, the symptoms because
they can be vague. Again, they come and go, and
the family members don't know about lupus, may not have
heard about lupus or no anyone else. And now you're
adding that stress right to the physical toll that lucas
takes on people. So that was a diagnosis that was
(24:14):
nineteen years in the making. How many doctors do you
figure you saw in that time period, anywhere from eight
to twelve, and that includes specialists. What do you think
contributed to that? Was it your age, your gender? You know?
Was it a race thing? Looking back now, I definitely
(24:37):
think that it had a lot to do with my
age in my race. Being young, people just don't take
you seriously, and when you come from low income families,
they just disregard a lot of the things that you
have to say because either you're making it up, or
if you do have something, you can afford the treatment.
So you know why even bother she's had to experience
(25:01):
mistrust and disloyalty from people and entities that should have
protected her, should have cared for her, should have been
trying to alleviate some of what she was experiencing. So
there's that part that she's going to have to carry
with her. It's now been twelve years since her diagnosis,
(25:26):
her kids are teenagers, and Naobe works with the Lupus
Foundation of America to raise awareness for the disease that
sent her on an emotional and physical roller coaster. So
now my lucas is manageable. I'm not in remission, so
my disease so active, but I've been able to find
the right combination of medications that helped me maintain the
(25:51):
disease activity until prayerfully, it goes into remission or just
goes away and never comes back. You know, she couldn't
even imagine dancing because two minutes of dancing was ten
days of pain. But now she can. So as we
see her progress based on getting proper treatment, getting a
(26:13):
proper care, getting proper medication, becoming more active the future
looks bright for Niobe and for the family as well.
You know, grandkids will be able to dance with grandma
at some point, right, So that's a pretty cool thing
to imagine when not that long ago that wasn't something
(26:35):
that would have been a thought of ours. What is
truly amazing about Naobe is her positivity and determination to
use her story to help other people. There was very
little sense of animosity towards specific people who made this
journey more difficult. There was very little feeling of giving up,
(26:56):
always just putting one foot in front of the other
with a sense of person self belief. Yes, yes, her
loopy's as they call each other. Uh man, she's like
a big deal. Like you know, we go to the
walks or to the events and they light up when
they see her and it's hugs and oh man. Yeah,
she's like the popular kid in the loopy school for real,
(27:20):
big advocate. She's always pushing forward. She's not afraid to
speak out against the things that are being done wrong.
She shares any any information she gets and goes right
to the l f A so she can help other
people who are dealing with what she's dealing with. She
communicates with people from all over the country in the
world that she's never even met, but she treats them
(27:43):
like friends and like family because she understands what they're
dealing with. What I always say is this, be your
own advocate. To advocate for yourself is very important. I
also suggest that anyone who thinks that they might have
lupus or experience symptoms of lupus let your doctor know
(28:05):
and that they can always get more information on lupus
at lupas dot org. For nineteen years, Naobie Rick suffered
with ever changing symptoms from a mystery illness, swelling and
pain in her arms and legs, temporary partial paralysis at times,
aches all over her body to the point she couldn't
get out of bed. She persisted through doctors that never
(28:29):
seemed to fully understand her suffering, and when she was
finally diagnosed with lupus, her symptoms became worse, almost stabilitating.
But luckily, with the support of her family and new doctor,
she was able to find a set of treatments to
manage her symptoms, a set of treatments that allows her
to get back up and dance to nineties R and
(28:50):
B just like she did as a kid. I'm Naobi
Ricks and for nineteen years I struggled with a disease
that was misdiagnosed. Yeah. To find out more information, visit
the Lupus Foundation of America at lupus dot org. Symptomatic
a Medical Mystery Podcast is an original podcast from I
(29:12):
Heart Radio. Are shows hosted by me Lauren Bright Pacheco.
Executive producers are Matt Romano and myself. Our EP of
post production is James Foster. Our producers are Crra Kaiser
and John Irwin.
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