May 14, 2025 • 33 mins
We're back!!
KT and Kayla are back with another episode after taking a few weeks off due to KT being hospitalized. In this episode the ladies discuss KT's diagnosis of Guillain-Barre Syndrome, what she has been dealing with the past two months, and her recovery journey. May is Lupus Awareness Month. Tune in as the ladies shed some light on what this disease is and how it has affected KT's life over the past 5 years. Enjoy!
KT and Kayla are back with another episode after taking a few weeks off due to KT being hospitalized. In this episode the ladies discuss KT's diagnosis of Guillain-Barre Syndrome, what she has been dealing with the past two months, and her recovery journey. May is Lupus Awareness Month. Tune in as the ladies shed some light on what this disease is and how it has affected KT's life over the past 5 years. Enjoy!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
The Petty Is Podcast.
Speaker 2 (00:11):
Welcome back to Patty Ish. I'm Kayla Kaylee, and we've
been going I'm sorry.
Speaker 3 (00:19):
Don't be sorry. I want to know what the heck
is going on.
Speaker 4 (00:22):
I feel bad because we had only got through what
two episodes, but we were gone for a year, disappeared
together and then come back for two episodes and then
we're gone for.
Speaker 2 (00:32):
Like well, to be honest, like you know, you've You've
always talked about you having lucash. You've always been open
with it, and I knew it was something you had,
but it was just something you had, but it didn't
affect you like I mean, obviously it does, right, but
you're so you work harder than anybody I know. You
show up for me whenever I need it, your turn
up queen, so like to see it really impact you
(00:54):
was like, whoa, this is this is real?
Speaker 3 (00:56):
So like what happened?
Speaker 1 (00:59):
Girl, I don't even know? And that's like I don't
even know.
Speaker 5 (01:04):
Man.
Speaker 3 (01:05):
You were turning out for your birthday.
Speaker 2 (01:07):
That's what we were talking about on the show, your
legendary house parties.
Speaker 3 (01:10):
Your birthday was amazing. You were the life of the party.
Speaker 2 (01:14):
And then we were supposed to record pettyish and you
didn't feel well, you were having joint pains, so that.
Speaker 3 (01:20):
What was that?
Speaker 4 (01:20):
Like? Well, honestly, like I wasn't fine on my birthday,
Like I had felt weird I want to say, two
weeks prior, but just didn't think of it as anything really. Yeah,
and it wasn't like the typical loopis symptoms too, but
I just.
Speaker 1 (01:38):
Was like, Oh, this is just something that'll go away.
Speaker 4 (01:41):
Whatever my birthday's coming up, Like I have so much
plan for my birthday, I don't got time to figure
out what this is right now, which was probably like
my first mistake. But yeah, so I'd like pushed through
for my birthday and still had a great time. But
even then I wasn't feeling well. But it was two
days after my birthday where everything just kind of like
(02:01):
went haywire and I was like, oh, wow, like I
actually should.
Speaker 1 (02:06):
Really focus on this.
Speaker 4 (02:08):
But yeah, yeah, so I don't know, man, Like it's
kind of hard to explain and like very emotional to
explain because I'm still going through it. But like kind
of like what you said, it's like people always are
shocked when I tell them I have lupus because you
look at me and you would never be able to
tell because I live my life like it's completely normal,
(02:28):
and that's that's actually not true. I mean I do
do things behind the scenes that nobody would know, like
I have I'm on medication, I'm want like a diet.
I cut back on things that I you know, I
used to do an excess because I have lupus.
Speaker 1 (02:43):
But you would see.
Speaker 4 (02:45):
Me and be like, what, like you you're smiling all
the time, You're glowing, You're this you are able to
go here and there and travel and you're able to
do all this stuff. And it's like, well, it's true
because I felt the same way, Like I my loopus
was silent for a year and a half. I had
no symptom, Like I even went to the doctor like
a few months ago, and I was like, I do
(03:05):
I even still have this? But of course I do,
Like it's something I'll have forever, it will never go away.
Speaker 1 (03:10):
And she'sus the same with will wait any mo day.
Speaker 4 (03:13):
But yeah, and so she was like, well, you know,
you could it could just be silent, you know, like
that's very well possible, Like you're just don't have any
active symptoms. And so I'm living my life happy, like
I am. I basically like got myself to the point
where I am just I'm good, I'm I'm silent, I'm
in remission type of thing. Ye, And so maybe I
(03:33):
got lacks of daisical. I don't know, maybe I I
don't know where I went wrong. But it was so disappointing,
so disappointing for this to happen because I was doing
so good, So like, I don't know, it's just really
really hard.
Speaker 1 (03:51):
It's just it was just, Oh.
Speaker 4 (03:53):
I was just so mad at my body for just
like kind of giving out on me when it was
doing so well. And then all so like I am
that type of person that cares what other people think
about me, and I'm like a fuck, Like, no, everybody's
gonna think I'm sick.
Speaker 3 (04:05):
And it's just dumb. But it's not that you did
anything wrong.
Speaker 2 (04:13):
Isn't this just how the disease is, Like it can
be just dormant and you could just be doing everything
you're supposed to be doing. But lupus is an autoimmune disease,
so it's gonna come up every now and again. Or
are there people that just live with it and it
never comes up?
Speaker 3 (04:26):
Like is that a thing? As well.
Speaker 1 (04:27):
No, that's very, very true.
Speaker 2 (04:29):
So that's what you thought that that's what you thought
was the case with you, And it's possible that I
can go silent again.
Speaker 3 (04:33):
This is just it acting up in the moment.
Speaker 2 (04:36):
So you well, first of all, I don't think anybody
thought you were sick, like I think from the outside
looking in, it was just like this woman who shows
up for everybody in her circle whenever they need it.
Speaker 3 (04:48):
How can we show up for you in this moment?
What do you need?
Speaker 2 (04:50):
Like, because we're not gonna let you fill alone? What
could I get for you?
Speaker 3 (04:54):
Well? How can I make this better? Like? I think
that's that was definitely my mindset. And I know you had.
Speaker 2 (04:58):
A garden in your home, you had somebody at the
hospital visiting you. You were never owning your house, so
I feel like it was just your community. I don't
think anybody was like, oh Kayla, wow, well poor Kayla.
It was just like, how can we get our girl
back to be like that? I think that was the
main mindset, But I definitely get where you're coming from.
Speaker 4 (05:14):
My first thought was like my job, man, Like I
was like, man, I got an interview with give me
on this week? What I have five shows to do.
I don't got time for that. So basically how this
happened was it started with, uh, my hands would go numb,
and they would like just think of it as like
just your hands fall asleep, your feet fall asleep. And
it was like that for like two weeks. I'm like,
(05:35):
what's going on, just but like but ignoring it, and.
Speaker 1 (05:40):
So I.
Speaker 4 (05:42):
Yeah, So I did go to the doctor about it,
and they were trying to figure out they were They
saw nothing wrong. They would do with like some blood
tests and like everything was good, and so I was like, Okay,
maybe this is just something that will go away, you know.
And so it was like that for like two weeks
before my birthday and I was starting to like lose
(06:03):
energy or whatever. But I was like, I got a
mustard through for my birthday, like I'm good, Like I'm
gonna be I God, who's gonna want me.
Speaker 1 (06:12):
To celebrate myself? Like I would push through.
Speaker 4 (06:14):
And then after my birthday, I don't know, and everyone's like,
did you like turn up too hard? Did you go
too hard for your birthday? And once I explain what
I have it it had nothing to do with like
my birthday weekend or anything like that. This is something
that was gonna happen no matter what. Yeah, so two
days after my birthday, my and I like lost like
(06:35):
partial morbility from the waist down completely, So just yeah,
like think about like your legs falling, your falling asleep.
That was from here down and I even mean like
this like your helvic area too, like can't feel anything,
and so like I'm I'm limping around like why am I?
Speaker 1 (06:53):
Like what's going on?
Speaker 4 (06:54):
And then also it was it started not only was
my my hand.
Speaker 1 (06:58):
It traveled up to my arm, so it was.
Speaker 4 (07:01):
Like you know those pins and needles type of feeling
like And I was like, am I having like a
stroke too? Because it was kind of moving up and
that's kind of like the first time of stroke is
like you know, things go numb, and so I was
like what. So I went to the doctor again and
she you know how they do like your reflex test
(07:22):
on your knees and stuff, like I had no reflex
back when that and like I didn't kick, So I
was like losing everything down there, slowly but surely. And
Bailey could walk was like all but like crawling into
the doctor's office. She ordered me an MRI and a
X ray both came back clear that she ordered it
on my spine and because she was like, there's something
(07:46):
going on with your nerves or d D nothing, and
so I was like, okay, fine, then this must be
like a loopis thing. I scheduled a appointment with my rheumatologists,
which is like your loopis doctor on Friday. And I
was like, if I can just make it to Friday,
my loopis doctor will give me the medication that I
need to heal me and I'll begin if I can
just make its a Friday. So I get to Friday,
(08:06):
I'm like limping, I'm like crawling in there. I'm it's
just so much and I can't even say it's pain.
It's a feeling that you like I can't excribe, like
even to this day, it's not like I'm it wasn't painful.
It's just like uncomfortable, yes, And it's like and unless
you ever had your nerves act up like you can't
I can't describe it. But it feels like your body
(08:28):
is just like so out of whack, you know.
Speaker 5 (08:31):
What I mean.
Speaker 1 (08:31):
And so walking didn't hurt. To walk, it was like.
Speaker 4 (08:37):
Walking edges shells and if I was to put too
much pressure, my whole body would just give out.
Speaker 1 (08:43):
So it's never like pain. I don't know how to
describe it.
Speaker 2 (08:46):
Did you fall like had you have fallen trying to
walk without like did you lose balance?
Speaker 3 (08:51):
Like or you eat?
Speaker 4 (08:52):
There were times like in my house like I would
you know, my legs would give out, that's how weak
they were. So I get to my loop as doctor
my rooms and she's like, Kayla, your lupus labs actually
look okay. This isn't This is more like a neuro problem,
like you can't even walk, like this is your this
(09:14):
is your nerves. And I was like what, like you
what do you mean? She was like, Heyla, you need
to go to the hospital right now. And I was like, no,
I don't got time for that, Like I need you
to give me medicine so I can go home, Like
I don't have time for the hospital. She's like, Heyla,
you cannot walk. And what happens if this, I mean
your numb everywhere and it's traveling up to your arm.
This co leads paralysis. There's so many different things like
(09:35):
you need to go. So I went to UCLA Santa
Monica I took myself thinking I would be discharged that night, right,
So as me as like, immediately I get there, she
she called the hospital ahead of time, telling them that
I was gonna be come, that was on my way.
That's how like like nervous she was for me. So
as soon as I got there, they knew who I was.
They knew like, okay, we're taking her back. So I immediately
(09:59):
go in for another MRI or my lower spine, right,
and that's when the waiting began. I was on like
a gurney and the hospital bed thing in the middle
of the hallway for.
Speaker 1 (10:11):
Like six hours.
Speaker 5 (10:12):
WHOA.
Speaker 4 (10:12):
So I'm hearing people getting rushed in from the er.
I'm hearing people screaming because the crazies are coming in,
and I'm just it just got a waiting game. It's
a waiting game. They take my ear in, they took
my blood, and I'm just I'm like, what is going on?
Like I obviously I like it's Friday, so I'm off
on Fridays anyway, but I'm like, I have worked tomorrow,
Like what's going on? And then the neurologist comes and
(10:34):
sees me and he says, Kayla, we found inflammation in
your lower spine. We think what you have is called
Giambret syndrome. And I was like, okay, so can I
have medicine so I can go home? And he was like, no,
we're gonna have to omit you because you're gonna have
to get treatment for this over the course of a
few days. And I was like, what do you mean
over a course of a few days? Like no, Like
(10:55):
he was like no, like this is actually pretty serious.
And I was like what. And I just have like
a meltdown And it wasn't even meltown, like it was
a meltown just thinking like what I had to take
off of work, like what I had I have to admit?
What does a mit mean? Like I mean, I'm want
to have a room, Like I just couldn't fathom the
fact that this was happening to me right then and there,
Like I was just chilling at home with my cat,
(11:16):
Like then, I have my cat at home, So I'm
calling Jordan like I'm like, somebody has to go to
my house to take my lo Like I'm like crying,
and I'm like, what the heck is beyond Bray syndrome?
So basically it's when your immune system attacks your nervous system.
Speaker 5 (11:33):
Wow.
Speaker 4 (11:33):
So because I have loopus and I have a weak
immune system, I was more prone to get it. Okay,
so it's not necessarily a loopus issue. But because I
have lupus, this happened.
Speaker 1 (11:45):
Does that make sense?
Speaker 4 (11:46):
You mind?
Speaker 1 (11:46):
Anybody you could get it?
Speaker 3 (11:47):
Right?
Speaker 1 (11:48):
And they say it stems from a gut infection.
Speaker 5 (11:51):
Wow?
Speaker 3 (11:51):
Right?
Speaker 4 (11:52):
So I either at one point somebody was sick around
me and was like very sick and I caught it
but didn't know it and I was like asymptomatic, or
I had food poisoning diarrhea, or something happened with my gut.
And I'm thinking back, I'm like looking at the dates,
like when when did I get I don't even remember
(12:12):
me being sick at one point, Like I can't even
think about that.
Speaker 1 (12:15):
But like, so when I tell you that.
Speaker 4 (12:19):
Basically it's been going on for a long time, this
would have happened no matter what, like something was wrong
with my stomach.
Speaker 2 (12:26):
So is this something that's going to like continue to
happen that you have to have medication so your immune
system no longer attacks your nervous system or is it,
like you know, I'm gonna beat you up real quick,
and I'm.
Speaker 3 (12:36):
Good, you know.
Speaker 4 (12:36):
So they say that gyambreat syndrome is typically like such
a rare thing that this will never happen to me again.
Speaker 3 (12:41):
Oh okay, but I.
Speaker 4 (12:42):
Gotta continue my story because they don't even think it's
that anymore. Okay, So that was my initial diagnosis. It
was giambreat syndrome. And so I'm like, what so trying
to wrap this story up like they emit me. My
mom immediately flies out. The next day, I called my
boss and I'm like, this is what's going on, like
(13:05):
just keeping him on My boss and EJ updated and
she was so great, just like, Okay, what do you need?
Do you need this to go to your house? Do
you need any books? Do you need who's.
Speaker 1 (13:13):
Taking care of your cat?
Speaker 4 (13:14):
And luckily I had gotten a hold of who took
her of my Was it Tato my neighbor like broke
into my house, took care of my lobe so that
my mom could Then my mom took over the next
day when.
Speaker 1 (13:25):
She got here.
Speaker 4 (13:26):
So yeah, So basically the treatment that I got was
called iv I G and it's just to treat gyon
bray syndrome. It's basically to uh, get the inflammation like
suppress inflammation of your nerves or whatever. So I had
to get that. Oh, because I had I had to
stay five days. So it's because they give it to
you any wait, they give it to you like it's
(13:48):
over a course of five days.
Speaker 1 (13:49):
That I had to take this.
Speaker 4 (13:50):
Over the course of those five days, while I was
still getting the iv ig treatment, they also tried to
do a lumbar puncture. They needed to get fluid out
of my spine to see if anything else was you know, impacted.
Speaker 1 (14:03):
They there was there's a non invasive way to.
Speaker 4 (14:05):
Do it, which is basically just like it's you don't
have to go into the operating table like you could
just do it in a room and a you know,
a doctor would come and put a needle in your
spine very carefully withdraw the fluid. They couldn't get any
fluid out of my spine for whatever reason. I could
have been dehydrated. It just it just didn't work. So
I had to do a more invasive one three days
(14:25):
later with a radiologist on the table. Wow, and that
when that came on Monday. Because of the way they
did it and a lumbar puncture in general, one wrong move.
Speaker 1 (14:37):
And you're paralyzed for life, right painful.
Speaker 4 (14:41):
It was the yes, oh my God, And afterwards my
back was hurting so bad. And then also the side
effects were crazy. I had the worst migranine I ever
had in my life, and I was throwing up for
about six hours in that hospital. It was just the
most miserable thing ever. And those migraines lasted for nine
days after even so that's why I couldn't even come
back to work, like even after I was discharged because
(15:03):
my migraines. It wasn't even because of the numbness, Like
I can sit here and my legs be numb and
I can still talk, right, I couldn't go back to
work because I couldn't even see straight because of the migraines.
And I was throwing up. So for a while, I
couldn't eat anything but chicken noodle soup. And even to
this day, I probably lost weight because I can't my
my appetite has changed over the past three weeks. So anyway,
(15:26):
but while I was in the hospital, I got so
many like scans I got. They wanted they wanted to
rule out everything because they weren't quite sure it was
Giambret because I didn't quite match all of the criteria.
I had these symptoms, but I didn't have like some
of these, so they did a CT scan of my
brain to see if I had multiple multiple scolios MMS.
(15:48):
They did a a MRIO my upper spine of my
pelvis like I I probably went into the CT scan
MRI thing for like about four times, and one of
those times I had to be in there for like
an hour, and I had the worst like anxiety attack.
And I'm not even claustrophobic, but I went into that
(16:10):
room and the lady who was so kind to me,
and she could tell that I was just so stressed
out and I just did not want to go into
that MRI thing because I was in that tunnel and
I was like, I can't do this, Like this is
all just too much. And she like literally for the
entire hour as it was going, like talked me through it.
Speaker 1 (16:31):
Are you okay?
Speaker 5 (16:32):
Kayla?
Speaker 4 (16:33):
Gave me lavender, like a scented thing to put on
my little gown to like help me like calm down,
and just so nice. Everybody at UCLA Hospital was just
so nice. I had a night nurse that would come
and sit with me and just gossip all night, every
night for three nights and just was like the best nurse.
Shout out to Anna. We follow each other on Instagram now,
but she was just so great and so kind and
(16:55):
made me laugh at a time that was just so weird.
And I'll never be able to thank her enough for
just being like a light. But I also want to
thank all the people that came to visit me in
the hospital, because I didn't even really expect anybody to
come at first. They were trying to tell people I couldn't.
They had me in a room in a quarantine room
(17:16):
by myself, double doors because I was a mut immunal compromise.
So when my mom first came, she had to wear
like a gown, gloves, a mask, and I had bingy.
Speaker 1 (17:28):
It made me feel like so weird.
Speaker 4 (17:30):
I was like, damn am I like really like that's sick,
Like they got to put me in this in this room,
so that was weird. But yeah, so thank you to
everyone who sent me food, who came to the hospital.
It was really far, so it means a lot, especially
my coworkers and who just sat with me and.
Speaker 1 (17:53):
Just eat with me.
Speaker 3 (17:58):
I love the community that you have.
Speaker 2 (18:00):
I think it's again in the reflection of the light
that you are in everybody's world. You show up for
everybody again. I can't say it enough all the time.
It's the least they could It's the least we could
do for you, you know.
Speaker 1 (18:11):
Yeah.
Speaker 3 (18:11):
And I love God's angels, Like I didn't know the
nurses were so nice to you. I didn't if you
put lavender oil in your little gown. It was talking
to me like, I love God.
Speaker 2 (18:18):
He puts the best people by you when you're going
through the toughest times.
Speaker 3 (18:21):
You're never alone.
Speaker 4 (18:22):
I had a really good time at a hospital and
it was one of my friends said, Kayla, like, don't
say woe is me? Because I was just in this
mindset of like why is this happening to me? Like
this isn't real, And they was like, just think of
this as a vacation or a resa that you need.
This doesn't have to You're not going to die.
Speaker 5 (18:40):
Yeah.
Speaker 4 (18:41):
And so when I finally got discharged, they told me, Kayla,
don't be alarmed if you still feel numbness and weakness.
And when you're discharged, because the iv IG treatment kind
of takes weeks to like really get into your system.
But also we're not quite sure if it's Gyonmbre syndrome
because you don't really meet the qualification. You know, you
(19:01):
have like about like thirty percent of like the qualifications
for geyon Bray syndrome, So we're.
Speaker 1 (19:05):
Not still quite not quite sure what's wrong.
Speaker 4 (19:08):
But all of your other scans came back completely clear
in your brain and your upper spine. It's just that
inflammation in your lower spine and the weakness and you
you know, also like as I was in the hospital,
it wasn't traveling upwards, so we ruled out like a
possibility of a stroke happening or anything else bad happening.
So they were just like, but you know, when you
(19:28):
were you're good to be discharged because you are getting stronger. Also,
by the way, they wouldn't even let me shower, oh,
because that's right. They wouldn't let me shower because they
were afraid that I would fall in the shower because
I was so weak and mind Joe at that point,
like I could not walk, and so they would give
me like a bucket to wash myself, like like a
(19:51):
big bucket with a watch cob.
Speaker 1 (19:52):
It was so weird.
Speaker 4 (19:54):
And then I had a walk with a walker everywhere
that I went if I did walk, which was rare,
but that's the side thing. So yeah, they were like,
you're now gonna have to see a neurology as an
outpatient and they'll take it from there. And I'm like, what,
So you guys don't really know what's like really wrong.
Speaker 2 (20:09):
It's like so much good news because it's like, you know,
it's not traveling up, you're not having a stroke. Everything
is coming back you know, past for the most part.
But then it's like then what the hell is going on?
So it's such a juxtaposition of emotions.
Speaker 3 (20:19):
I'm sure.
Speaker 5 (20:20):
Yeah.
Speaker 4 (20:21):
So I get home and my mom leaves like two
days later, and I don't have another neurologys appointment for
like two three weeks later, so I have to wait.
Oh it's just a waiting game of just taking my medicine.
They have me on oxy which also like man like
the depression that came after, like oh my goodness, Like
(20:45):
it was so rough, like being home after my mom left,
but also it was so nice because man like, people
really showed up for me after my mom left, especially
like Donna. Donna is like my mom here in California.
She lives right next to me in an apartment complex, and
her and her husband have always just been so nice
to me and great. And she came over like every day,
(21:06):
brought me smoothies, chicken, a new soup. She would force
me to drink water, encourage me when I would I
would just cry all the time, and she would just
encourage me.
Speaker 1 (21:16):
There was a point where I was just so down
and so sad. I just wanted to give up, and
she just sat with me and prayed with me.
Speaker 3 (21:27):
And just helped men something.
Speaker 4 (21:31):
Yeah, I just want to say and thank you to
everybody who came to my house after my mom left,
because that's when I was really scared. Yeah, I was
really scared to me on my own, not being able
to walk like I literally like my legs like it
didn't hurt, they just felt like jello, like they weren't there,
and so I couldn't And then my hands were very
unsteady too, so cooking wasn't even an option for me,
(21:52):
Like and then that depleted all of my energy. Saw
I could do was just lay there and cry and
like you had send me like suffer migrains like the
Epson salt, which I appreciated, and the food that people
brought me, even people from back home in the East Coast,
just sending me all these flowers and food, Like I'm
(22:13):
so overwhelmed and I'm so thankful and it really did
brighten my spirits. And yeah, so that's kind of where
we are today. I had to take like a sick leave,
like because I was all for like fourteen days, but yeah,
I was able to go back to work last week,
I think. And where I'm at now is I still
(22:40):
feel numb, and every day I wake up not knowing
what part of my body is gonna be numb. So
one day I'll have a really good day and I
have great energy and I feel great and I've learned
to you know, I'm taking awesome in physical therapy, so
that's been helping and just doing that, and the exercise
(23:00):
is in the massages and acupuncture. I've been trying everything. Man,
I've been trying everything, and sometimes I feel like it's verable.
Speaker 1 (23:08):
I feel like it does not, but I just hate
feel like a foreigner in my own body.
Speaker 3 (23:13):
It's just so stupid.
Speaker 4 (23:16):
But I am getting better because I know my strength
is coming back and I could walk, but you know,
sometimes I just my hands don't really feel right or
my legs. But most recently I went to I did
get to go to my neural disappointment and I got
an EMG last week. So last week, an EMG is
(23:38):
what the hospital told me that I would need, and
that will tell you what specific nerves are damaged.
Speaker 3 (23:44):
Okay, So I went.
Speaker 4 (23:45):
In and they electrocuted me everywhere, like basically it was
what it felt like, and just poke needles everywhere and
they I don't know how they do it, but I
just want to say, whoever is a doctor, like, kudos
to you, because like what will we do without them?
The fact that they could read little line like that
and just zap me right here and can tell if
my nerves or whatever. So, and I had been doing
(24:06):
my own research online, like so I have this this
perihthural neuropathy, and people online were saying like, I've been
dealing with this for eight years with no relief, and
so in my mind, I'm like, fuck, I'm gonna be
dealing with this for rest of my life. Like you know,
this girl has it and she she don't have no
cure and the man, this girl has it like, but
(24:26):
I got my AMG and then I was able to
get my results the next day, and so Donna came
to my house for the tele health appointment and he said, Kayla,
there's nothing wrong.
Speaker 1 (24:38):
There's nothing wrong. There's nothing there was like, your nerves
are great.
Speaker 3 (24:42):
That's great news.
Speaker 1 (24:44):
But again, but what the word is wrong with me?
Speaker 3 (24:46):
Exactly?
Speaker 5 (24:47):
Right?
Speaker 1 (24:48):
Exactly, So it was great news that like, there's nothing.
Speaker 4 (24:52):
Permanent, right right, there's nothing like that I can't recover
from from rehab and just medication and stuff.
Speaker 1 (25:00):
But then he was like, so we're going to send
you to a muscular neurology.
Speaker 3 (25:03):
Okay.
Speaker 1 (25:04):
So I'm like, all right, because clearly something is still
not right. We got to figure it out.
Speaker 4 (25:09):
Could it be like something in your muscle? I forget
what they exactly what they said, So that is pointment
is on the twenty first, So I don't know.
Speaker 1 (25:17):
That's where I am right now. That's that's literally all
I get s.
Speaker 2 (25:20):
I mean, I love the fact that you have such
a good team, a medical team that's like, okay, so
that didn't work.
Speaker 3 (25:26):
Now we're stting you here.
Speaker 2 (25:27):
Now we're sitting there as a roost like it's in
your head, go home, you know, like because I hear
that that happens especially to us as black women. So
it seems like you are really fortunate with the medical
team that you found in this foreign estate. And when
you said being a foreigner in my own body, that
really for me put exactly into perspective how you feel,
and that is very difficult to deal with, and you
(25:49):
do it with such grace, Like Kayla, you don't even
know how many times you've made me laugh during this time,
Like every time I message you, You're like, I'm about
to be the baddest girl with a cane or the
baddest out here with a cane. I don't care I'm
losing what You're about to be skinny ready for the summer,
Like I'm cracking enough. So it's like I'm even when
you're going through all that you don't feel good yourself,
you're still a remaining light to those who love you.
Speaker 5 (26:09):
Like you.
Speaker 2 (26:10):
When I see your name pop up my phone, it's
one of my favorite messages to receive.
Speaker 3 (26:13):
Some Moses' about to say, Now what is about to say?
Speaker 2 (26:16):
A lot of the times it's work, because that girls,
you work, but you are also just so funny, so light,
and I'm so happy that you're my friend, and I'm
so happy that you are getting the help that you need.
It's only a matter of time, Kalus, only a matter
of time. And you said, there's nothing permanent, there's nothing
that's going to be forever.
Speaker 3 (26:30):
So God is good. God is good. Yeah.
Speaker 4 (26:33):
And I also want to say also, like if one
this is it is Lupi's awareness month, so this is
kind of like perfect. But no matter what you have,
if anything I've learned in the process is to advocate
for yourself. And I just felt so naive, like just
going into that hospital and the doctor saying all these
(26:55):
big words to me and you know, not knowing how
to really comprehend what they were saying saying.
Speaker 1 (27:00):
And you know what my friend Brianna did for me.
Speaker 4 (27:04):
She went on chat cheat BT and typed in keom
Baret syndrome and lupus and what.
Speaker 1 (27:09):
To ask your doctor.
Speaker 3 (27:11):
Oh wow.
Speaker 4 (27:11):
And that was the smartest thing that added the entire
process of me being there, because chatchy BT came up
with all these questions that I could comprehend and then
articulate back to the neurologist and he was able to
answer all the questions like that Chat gave me, and
those questions were able to me and my mom at ease.
Speaker 1 (27:33):
So if you're in any situation like.
Speaker 4 (27:37):
Medically, like go to chat ey BT because you know,
because the doctors, like especially the neurologists like he was,
so I don't know.
Speaker 1 (27:46):
How to describe them.
Speaker 4 (27:46):
It's so nerdy and like the like they don't speak,
they're not they're socially awkward. So unless you'd speak to
them in their terms like or just ask them straight questions,
they're not going to give you more. Like I was,
I wanted them to say I'm gonna be okay, and
they would not give that to me. They I was like,
am I gonna be all right? And I think they're
not met it like legally allowed to say you're gonna
be okay, but there he was just like not giving
(28:06):
me any type of hope. So giving asking those questions
definitely helped. But yeah, so I just encourage everybody to
just to get checked out, don't ignore anything, And that's
what I did. Like I knew that my hands were
falling asleep and my feet were falling asleep and kind
of pushed it off for the sake of my birthday,
(28:27):
you know, And.
Speaker 3 (28:29):
I mean you did spend a lot of money on
my dress in the hair dollars, but no, you're here.
Speaker 2 (28:34):
But I feel like, so what would would you What
do you feel the difference would have been had you
gone sooner versus when you did go because you said
it was going to happen regardless, you said there was
something in your stomach.
Speaker 3 (28:42):
You said that.
Speaker 2 (28:43):
You know, they're still trying to figure out exactly what's wrong.
So do you really think that going a little earlier
would have made a difference.
Speaker 4 (28:51):
Probably, I think I wouldn't have been because at one
point I could walk fine. I was just tingling, So
maybe I wouldn't have lost complete mobility to the point
where I was walking on a cane for two weeks.
And yeah, so I think I could have caught it.
And then I got the id ig in my system
earlier to make me stronger.
Speaker 3 (29:11):
That makes sense.
Speaker 4 (29:12):
So yeah, yeah, but man, the amount of money that
has spent in medical bills over the past, like, oh
my gosh, this is just like it's just it's so frustrating,
and I'm still trying to ask God, like what is
the point of why like this literally stopped me in
my tracks for two months, for almost two months, and
maybe that's what I needed. And the doctors keep asking me,
(29:33):
are you stressed? And I was like no, like I'm happy,
Like really are I'm great with my job. I'm like
in a new relationship. Oh whatever that is, and I'm
doing like I'm happy.
Speaker 3 (29:45):
And I don't know.
Speaker 1 (29:47):
Maybe my body was under dress and I didn't even
know it. I don't know.
Speaker 4 (29:50):
So it just shows you just to pay attention to
your body. Don't go until you break. You know, even
though you feel like you have more in you, take
some time and rest because you might think up here
in your brain that you have more on you, but
your body is giving out. Yeah, but man, yeah it's
gonna be another a journey. I mean I have physical
therapy every week. I started taking stretching classes. You know,
(30:12):
I'm a pilates girl, but I can't do it yet
and that breaks my heart.
Speaker 2 (30:17):
But you're our favorite Lupis warrior, Like, thank you for
sharing your story. I know that's not easy, Like, thank
you for this vulnerability because we all see you as
so strong and you you still are so strong, Like
it doesn't take her from your strength in any way,
shape or form. But I know it's not easy for
you to be vulnerable or be seen as like, oh okay,
lot like you hate that. So I appreciate you you
sharing this and get up on the microphone because we
(30:39):
need our petty queen and we know what it's going
on with her body.
Speaker 4 (30:42):
Yeah yeah, So we'll be back next week with more
entertaining content, but definitely important, just just because it's Lupa's
Awareness month and there's so many other chronic illnesses that
people are dealing with that besides lupis. There's als, there's MS,
there's there's lime disease. And over the course of the
(31:03):
five years that I've had this, I've been able to
talk to so many people who have this stuff, and
you know, hear their stories and how they carry it,
and people carry it so different. Some people you can
see it all over them and some people you can't
see it all. So just remember to be kind to people,
be nice. You never know what anybody is going through.
And check on also your strong friends. And again, just
(31:24):
thank you so much to everybody who's been there for
me and called me.
Speaker 1 (31:29):
We love you, Kayla, love you too.
Speaker 2 (31:32):
Well.
Speaker 3 (31:32):
I guess we'll see you guys next week.
Speaker 5 (31:34):
By Tang Tang
The Petty Is Podcast.
Speaker 2 (00:11):
Welcome back to Patty Ish. I'm Kayla Kaylee, and we've
been going I'm sorry.
Speaker 3 (00:19):
Don't be sorry. I want to know what the heck
is going on.
Speaker 4 (00:22):
I feel bad because we had only got through what
two episodes, but we were gone for a year, disappeared
together and then come back for two episodes and then
we're gone for.
Speaker 2 (00:32):
Like well, to be honest, like you know, you've You've
always talked about you having lucash. You've always been open
with it, and I knew it was something you had,
but it was just something you had, but it didn't
affect you like I mean, obviously it does, right, but
you're so you work harder than anybody I know. You
show up for me whenever I need it, your turn
up queen, so like to see it really impact you
(00:54):
was like, whoa, this is this is real?
Speaker 3 (00:56):
So like what happened?
Speaker 1 (00:59):
Girl, I don't even know? And that's like I don't
even know.
Speaker 5 (01:04):
Man.
Speaker 3 (01:05):
You were turning out for your birthday.
Speaker 2 (01:07):
That's what we were talking about on the show, your
legendary house parties.
Speaker 3 (01:10):
Your birthday was amazing. You were the life of the party.
Speaker 2 (01:14):
And then we were supposed to record pettyish and you
didn't feel well, you were having joint pains, so that.
Speaker 3 (01:20):
What was that?
Speaker 4 (01:20):
Like? Well, honestly, like I wasn't fine on my birthday,
Like I had felt weird I want to say, two
weeks prior, but just didn't think of it as anything really. Yeah,
and it wasn't like the typical loopis symptoms too, but
I just.
Speaker 1 (01:38):
Was like, Oh, this is just something that'll go away.
Speaker 4 (01:41):
Whatever my birthday's coming up, Like I have so much
plan for my birthday, I don't got time to figure
out what this is right now, which was probably like
my first mistake. But yeah, so I'd like pushed through
for my birthday and still had a great time. But
even then I wasn't feeling well. But it was two
days after my birthday where everything just kind of like
(02:01):
went haywire and I was like, oh, wow, like I
actually should.
Speaker 1 (02:06):
Really focus on this.
Speaker 4 (02:08):
But yeah, yeah, so I don't know, man, Like it's
kind of hard to explain and like very emotional to
explain because I'm still going through it. But like kind
of like what you said, it's like people always are
shocked when I tell them I have lupus because you
look at me and you would never be able to
tell because I live my life like it's completely normal,
(02:28):
and that's that's actually not true. I mean I do
do things behind the scenes that nobody would know, like
I have I'm on medication, I'm want like a diet.
I cut back on things that I you know, I
used to do an excess because I have lupus.
Speaker 1 (02:43):
But you would see.
Speaker 4 (02:45):
Me and be like, what, like you you're smiling all
the time, You're glowing, You're this you are able to
go here and there and travel and you're able to
do all this stuff. And it's like, well, it's true
because I felt the same way, Like I my loopus
was silent for a year and a half. I had
no symptom, Like I even went to the doctor like
a few months ago, and I was like, I do
(03:05):
I even still have this? But of course I do,
Like it's something I'll have forever, it will never go away.
Speaker 1 (03:10):
And she'sus the same with will wait any mo day.
Speaker 4 (03:13):
But yeah, and so she was like, well, you know,
you could it could just be silent, you know, like
that's very well possible, Like you're just don't have any
active symptoms. And so I'm living my life happy, like
I am. I basically like got myself to the point
where I am just I'm good, I'm I'm silent, I'm
in remission type of thing. Ye, And so maybe I
(03:33):
got lacks of daisical. I don't know, maybe I I
don't know where I went wrong. But it was so disappointing,
so disappointing for this to happen because I was doing
so good, So like, I don't know, it's just really
really hard.
Speaker 1 (03:51):
It's just it was just, Oh.
Speaker 4 (03:53):
I was just so mad at my body for just
like kind of giving out on me when it was
doing so well. And then all so like I am
that type of person that cares what other people think
about me, and I'm like a fuck, Like, no, everybody's
gonna think I'm sick.
Speaker 3 (04:05):
And it's just dumb. But it's not that you did
anything wrong.
Speaker 2 (04:13):
Isn't this just how the disease is, Like it can
be just dormant and you could just be doing everything
you're supposed to be doing. But lupus is an autoimmune disease,
so it's gonna come up every now and again. Or
are there people that just live with it and it
never comes up?
Speaker 3 (04:26):
Like is that a thing? As well.
Speaker 1 (04:27):
No, that's very, very true.
Speaker 2 (04:29):
So that's what you thought that that's what you thought
was the case with you, And it's possible that I
can go silent again.
Speaker 3 (04:33):
This is just it acting up in the moment.
Speaker 2 (04:36):
So you well, first of all, I don't think anybody
thought you were sick, like I think from the outside
looking in, it was just like this woman who shows
up for everybody in her circle whenever they need it.
Speaker 3 (04:48):
How can we show up for you in this moment?
What do you need?
Speaker 2 (04:50):
Like, because we're not gonna let you fill alone? What
could I get for you?
Speaker 3 (04:54):
Well? How can I make this better? Like? I think
that's that was definitely my mindset. And I know you had.
Speaker 2 (04:58):
A garden in your home, you had somebody at the
hospital visiting you. You were never owning your house, so
I feel like it was just your community. I don't
think anybody was like, oh Kayla, wow, well poor Kayla.
It was just like, how can we get our girl
back to be like that? I think that was the
main mindset, But I definitely get where you're coming from.
Speaker 4 (05:14):
My first thought was like my job, man, Like I
was like, man, I got an interview with give me
on this week? What I have five shows to do.
I don't got time for that. So basically how this
happened was it started with, uh, my hands would go numb,
and they would like just think of it as like
just your hands fall asleep, your feet fall asleep. And
it was like that for like two weeks. I'm like,
(05:35):
what's going on, just but like but ignoring it, and.
Speaker 1 (05:40):
So I.
Speaker 4 (05:42):
Yeah, So I did go to the doctor about it,
and they were trying to figure out they were They
saw nothing wrong. They would do with like some blood
tests and like everything was good, and so I was like, Okay,
maybe this is just something that will go away, you know.
And so it was like that for like two weeks
before my birthday and I was starting to like lose
(06:03):
energy or whatever. But I was like, I got a
mustard through for my birthday, like I'm good, Like I'm
gonna be I God, who's gonna want me.
Speaker 1 (06:12):
To celebrate myself? Like I would push through.
Speaker 4 (06:14):
And then after my birthday, I don't know, and everyone's like,
did you like turn up too hard? Did you go
too hard for your birthday? And once I explain what
I have it it had nothing to do with like
my birthday weekend or anything like that. This is something
that was gonna happen no matter what. Yeah, so two
days after my birthday, my and I like lost like
(06:35):
partial morbility from the waist down completely, So just yeah,
like think about like your legs falling, your falling asleep.
That was from here down and I even mean like
this like your helvic area too, like can't feel anything,
and so like I'm I'm limping around like why am I?
Speaker 1 (06:53):
Like what's going on?
Speaker 4 (06:54):
And then also it was it started not only was
my my hand.
Speaker 1 (06:58):
It traveled up to my arm, so it was.
Speaker 4 (07:01):
Like you know those pins and needles type of feeling
like And I was like, am I having like a
stroke too? Because it was kind of moving up and
that's kind of like the first time of stroke is
like you know, things go numb, and so I was
like what. So I went to the doctor again and
she you know how they do like your reflex test
(07:22):
on your knees and stuff, like I had no reflex
back when that and like I didn't kick, So I
was like losing everything down there, slowly but surely. And
Bailey could walk was like all but like crawling into
the doctor's office. She ordered me an MRI and a
X ray both came back clear that she ordered it
on my spine and because she was like, there's something
(07:46):
going on with your nerves or d D nothing, and
so I was like, okay, fine, then this must be
like a loopis thing. I scheduled a appointment with my rheumatologists,
which is like your loopis doctor on Friday. And I
was like, if I can just make it to Friday,
my loopis doctor will give me the medication that I
need to heal me and I'll begin if I can
just make its a Friday. So I get to Friday,
(08:06):
I'm like limping, I'm like crawling in there. I'm it's
just so much and I can't even say it's pain.
It's a feeling that you like I can't excribe, like
even to this day, it's not like I'm it wasn't painful.
It's just like uncomfortable, yes, And it's like and unless
you ever had your nerves act up like you can't
I can't describe it. But it feels like your body
(08:28):
is just like so out of whack, you know.
Speaker 5 (08:31):
What I mean.
Speaker 1 (08:31):
And so walking didn't hurt. To walk, it was like.
Speaker 4 (08:37):
Walking edges shells and if I was to put too
much pressure, my whole body would just give out.
Speaker 1 (08:43):
So it's never like pain. I don't know how to
describe it.
Speaker 2 (08:46):
Did you fall like had you have fallen trying to
walk without like did you lose balance?
Speaker 3 (08:51):
Like or you eat?
Speaker 4 (08:52):
There were times like in my house like I would
you know, my legs would give out, that's how weak
they were. So I get to my loop as doctor
my rooms and she's like, Kayla, your lupus labs actually
look okay. This isn't This is more like a neuro problem,
like you can't even walk, like this is your this
(09:14):
is your nerves. And I was like what, like you
what do you mean? She was like, Heyla, you need
to go to the hospital right now. And I was like, no,
I don't got time for that, Like I need you
to give me medicine so I can go home, Like
I don't have time for the hospital. She's like, Heyla,
you cannot walk. And what happens if this, I mean
your numb everywhere and it's traveling up to your arm.
This co leads paralysis. There's so many different things like
(09:35):
you need to go. So I went to UCLA Santa
Monica I took myself thinking I would be discharged that night, right,
So as me as like, immediately I get there, she
she called the hospital ahead of time, telling them that
I was gonna be come, that was on my way.
That's how like like nervous she was for me. So
as soon as I got there, they knew who I was.
They knew like, okay, we're taking her back. So I immediately
(09:59):
go in for another MRI or my lower spine, right,
and that's when the waiting began. I was on like
a gurney and the hospital bed thing in the middle
of the hallway for.
Speaker 1 (10:11):
Like six hours.
Speaker 5 (10:12):
WHOA.
Speaker 4 (10:12):
So I'm hearing people getting rushed in from the er.
I'm hearing people screaming because the crazies are coming in,
and I'm just it just got a waiting game. It's
a waiting game. They take my ear in, they took
my blood, and I'm just I'm like, what is going on?
Like I obviously I like it's Friday, so I'm off
on Fridays anyway, but I'm like, I have worked tomorrow,
Like what's going on? And then the neurologist comes and
(10:34):
sees me and he says, Kayla, we found inflammation in
your lower spine. We think what you have is called
Giambret syndrome. And I was like, okay, so can I
have medicine so I can go home? And he was like, no,
we're gonna have to omit you because you're gonna have
to get treatment for this over the course of a
few days. And I was like, what do you mean
over a course of a few days? Like no, Like
(10:55):
he was like no, like this is actually pretty serious.
And I was like what. And I just have like
a meltdown And it wasn't even meltown, like it was
a meltown just thinking like what I had to take
off of work, like what I had I have to admit?
What does a mit mean? Like I mean, I'm want
to have a room, Like I just couldn't fathom the
fact that this was happening to me right then and there,
Like I was just chilling at home with my cat,
(11:16):
Like then, I have my cat at home, So I'm
calling Jordan like I'm like, somebody has to go to
my house to take my lo Like I'm like crying,
and I'm like, what the heck is beyond Bray syndrome?
So basically it's when your immune system attacks your nervous system.
Speaker 5 (11:33):
Wow.
Speaker 4 (11:33):
So because I have loopus and I have a weak
immune system, I was more prone to get it. Okay,
so it's not necessarily a loopus issue. But because I
have lupus, this happened.
Speaker 1 (11:45):
Does that make sense?
Speaker 4 (11:46):
You mind?
Speaker 1 (11:46):
Anybody you could get it?
Speaker 3 (11:47):
Right?
Speaker 1 (11:48):
And they say it stems from a gut infection.
Speaker 5 (11:51):
Wow?
Speaker 3 (11:51):
Right?
Speaker 4 (11:52):
So I either at one point somebody was sick around
me and was like very sick and I caught it
but didn't know it and I was like asymptomatic, or
I had food poisoning diarrhea, or something happened with my gut.
And I'm thinking back, I'm like looking at the dates,
like when when did I get I don't even remember
(12:12):
me being sick at one point, Like I can't even
think about that.
Speaker 1 (12:15):
But like, so when I tell you that.
Speaker 4 (12:19):
Basically it's been going on for a long time, this
would have happened no matter what, like something was wrong
with my stomach.
Speaker 2 (12:26):
So is this something that's going to like continue to
happen that you have to have medication so your immune
system no longer attacks your nervous system or is it,
like you know, I'm gonna beat you up real quick,
and I'm.
Speaker 3 (12:36):
Good, you know.
Speaker 4 (12:36):
So they say that gyambreat syndrome is typically like such
a rare thing that this will never happen to me again.
Speaker 3 (12:41):
Oh okay, but I.
Speaker 4 (12:42):
Gotta continue my story because they don't even think it's
that anymore. Okay, So that was my initial diagnosis. It
was giambreat syndrome. And so I'm like, what so trying
to wrap this story up like they emit me. My
mom immediately flies out. The next day, I called my
boss and I'm like, this is what's going on, like
(13:05):
just keeping him on My boss and EJ updated and
she was so great, just like, Okay, what do you need?
Do you need this to go to your house? Do
you need any books? Do you need who's.
Speaker 1 (13:13):
Taking care of your cat?
Speaker 4 (13:14):
And luckily I had gotten a hold of who took
her of my Was it Tato my neighbor like broke
into my house, took care of my lobe so that
my mom could Then my mom took over the next
day when.
Speaker 1 (13:25):
She got here.
Speaker 4 (13:26):
So yeah, So basically the treatment that I got was
called iv I G and it's just to treat gyon
bray syndrome. It's basically to uh, get the inflammation like
suppress inflammation of your nerves or whatever. So I had
to get that. Oh, because I had I had to
stay five days. So it's because they give it to
you any wait, they give it to you like it's
(13:48):
over a course of five days.
Speaker 1 (13:49):
That I had to take this.
Speaker 4 (13:50):
Over the course of those five days, while I was
still getting the iv ig treatment, they also tried to
do a lumbar puncture. They needed to get fluid out
of my spine to see if anything else was you know, impacted.
Speaker 1 (14:03):
They there was there's a non invasive way to.
Speaker 4 (14:05):
Do it, which is basically just like it's you don't
have to go into the operating table like you could
just do it in a room and a you know,
a doctor would come and put a needle in your
spine very carefully withdraw the fluid. They couldn't get any
fluid out of my spine for whatever reason. I could
have been dehydrated. It just it just didn't work. So
I had to do a more invasive one three days
(14:25):
later with a radiologist on the table. Wow, and that
when that came on Monday. Because of the way they
did it and a lumbar puncture in general, one wrong move.
Speaker 1 (14:37):
And you're paralyzed for life, right painful.
Speaker 4 (14:41):
It was the yes, oh my God, And afterwards my
back was hurting so bad. And then also the side
effects were crazy. I had the worst migranine I ever
had in my life, and I was throwing up for
about six hours in that hospital. It was just the
most miserable thing ever. And those migraines lasted for nine
days after even so that's why I couldn't even come
back to work, like even after I was discharged because
(15:03):
my migraines. It wasn't even because of the numbness, Like
I can sit here and my legs be numb and
I can still talk, right, I couldn't go back to
work because I couldn't even see straight because of the migraines.
And I was throwing up. So for a while, I
couldn't eat anything but chicken noodle soup. And even to
this day, I probably lost weight because I can't my
my appetite has changed over the past three weeks. So anyway,
(15:26):
but while I was in the hospital, I got so
many like scans I got. They wanted they wanted to
rule out everything because they weren't quite sure it was
Giambret because I didn't quite match all of the criteria.
I had these symptoms, but I didn't have like some
of these, so they did a CT scan of my
brain to see if I had multiple multiple scolios MMS.
(15:48):
They did a a MRIO my upper spine of my
pelvis like I I probably went into the CT scan
MRI thing for like about four times, and one of
those times I had to be in there for like
an hour, and I had the worst like anxiety attack.
And I'm not even claustrophobic, but I went into that
(16:10):
room and the lady who was so kind to me,
and she could tell that I was just so stressed
out and I just did not want to go into
that MRI thing because I was in that tunnel and
I was like, I can't do this, Like this is
all just too much. And she like literally for the
entire hour as it was going, like talked me through it.
Speaker 1 (16:31):
Are you okay?
Speaker 5 (16:32):
Kayla?
Speaker 4 (16:33):
Gave me lavender, like a scented thing to put on
my little gown to like help me like calm down,
and just so nice. Everybody at UCLA Hospital was just
so nice. I had a night nurse that would come
and sit with me and just gossip all night, every
night for three nights and just was like the best nurse.
Shout out to Anna. We follow each other on Instagram now,
but she was just so great and so kind and
(16:55):
made me laugh at a time that was just so weird.
And I'll never be able to thank her enough for
just being like a light. But I also want to
thank all the people that came to visit me in
the hospital, because I didn't even really expect anybody to
come at first. They were trying to tell people I couldn't.
They had me in a room in a quarantine room
(17:16):
by myself, double doors because I was a mut immunal compromise.
So when my mom first came, she had to wear
like a gown, gloves, a mask, and I had bingy.
Speaker 1 (17:28):
It made me feel like so weird.
Speaker 4 (17:30):
I was like, damn am I like really like that's sick,
Like they got to put me in this in this room,
so that was weird. But yeah, so thank you to
everyone who sent me food, who came to the hospital.
It was really far, so it means a lot, especially
my coworkers and who just sat with me and.
Speaker 1 (17:53):
Just eat with me.
Speaker 3 (17:58):
I love the community that you have.
Speaker 2 (18:00):
I think it's again in the reflection of the light
that you are in everybody's world. You show up for
everybody again. I can't say it enough all the time.
It's the least they could It's the least we could
do for you, you know.
Speaker 1 (18:11):
Yeah.
Speaker 3 (18:11):
And I love God's angels, Like I didn't know the
nurses were so nice to you. I didn't if you
put lavender oil in your little gown. It was talking
to me like, I love God.
Speaker 2 (18:18):
He puts the best people by you when you're going
through the toughest times.
Speaker 3 (18:21):
You're never alone.
Speaker 4 (18:22):
I had a really good time at a hospital and
it was one of my friends said, Kayla, like, don't
say woe is me? Because I was just in this
mindset of like why is this happening to me? Like
this isn't real, And they was like, just think of
this as a vacation or a resa that you need.
This doesn't have to You're not going to die.
Speaker 5 (18:40):
Yeah.
Speaker 4 (18:41):
And so when I finally got discharged, they told me, Kayla,
don't be alarmed if you still feel numbness and weakness.
And when you're discharged, because the iv IG treatment kind
of takes weeks to like really get into your system.
But also we're not quite sure if it's Gyonmbre syndrome
because you don't really meet the qualification. You know, you
(19:01):
have like about like thirty percent of like the qualifications
for geyon Bray syndrome, So we're.
Speaker 1 (19:05):
Not still quite not quite sure what's wrong.
Speaker 4 (19:08):
But all of your other scans came back completely clear
in your brain and your upper spine. It's just that
inflammation in your lower spine and the weakness and you
you know, also like as I was in the hospital,
it wasn't traveling upwards, so we ruled out like a
possibility of a stroke happening or anything else bad happening.
So they were just like, but you know, when you
(19:28):
were you're good to be discharged because you are getting stronger. Also,
by the way, they wouldn't even let me shower, oh,
because that's right. They wouldn't let me shower because they
were afraid that I would fall in the shower because
I was so weak and mind Joe at that point,
like I could not walk, and so they would give
me like a bucket to wash myself, like like a
(19:51):
big bucket with a watch cob.
Speaker 1 (19:52):
It was so weird.
Speaker 4 (19:54):
And then I had a walk with a walker everywhere
that I went if I did walk, which was rare,
but that's the side thing. So yeah, they were like,
you're now gonna have to see a neurology as an
outpatient and they'll take it from there. And I'm like, what,
So you guys don't really know what's like really wrong.
Speaker 2 (20:09):
It's like so much good news because it's like, you know,
it's not traveling up, you're not having a stroke. Everything
is coming back you know, past for the most part.
But then it's like then what the hell is going on?
So it's such a juxtaposition of emotions.
Speaker 3 (20:19):
I'm sure.
Speaker 5 (20:20):
Yeah.
Speaker 4 (20:21):
So I get home and my mom leaves like two
days later, and I don't have another neurologys appointment for
like two three weeks later, so I have to wait.
Oh it's just a waiting game of just taking my medicine.
They have me on oxy which also like man like
the depression that came after, like oh my goodness, Like
(20:45):
it was so rough, like being home after my mom left,
but also it was so nice because man like, people
really showed up for me after my mom left, especially
like Donna. Donna is like my mom here in California.
She lives right next to me in an apartment complex, and
her and her husband have always just been so nice
to me and great. And she came over like every day,
(21:06):
brought me smoothies, chicken, a new soup. She would force
me to drink water, encourage me when I would I
would just cry all the time, and she would just
encourage me.
Speaker 1 (21:16):
There was a point where I was just so down
and so sad. I just wanted to give up, and
she just sat with me and prayed with me.
Speaker 3 (21:27):
And just helped men something.
Speaker 4 (21:31):
Yeah, I just want to say and thank you to
everybody who came to my house after my mom left,
because that's when I was really scared. Yeah, I was
really scared to me on my own, not being able
to walk like I literally like my legs like it
didn't hurt, they just felt like jello, like they weren't there,
and so I couldn't And then my hands were very
unsteady too, so cooking wasn't even an option for me,
(21:52):
Like and then that depleted all of my energy. Saw
I could do was just lay there and cry and
like you had send me like suffer migrains like the
Epson salt, which I appreciated, and the food that people
brought me, even people from back home in the East Coast,
just sending me all these flowers and food, Like I'm
(22:13):
so overwhelmed and I'm so thankful and it really did
brighten my spirits. And yeah, so that's kind of where
we are today. I had to take like a sick leave,
like because I was all for like fourteen days, but yeah,
I was able to go back to work last week,
I think. And where I'm at now is I still
(22:40):
feel numb, and every day I wake up not knowing
what part of my body is gonna be numb. So
one day I'll have a really good day and I
have great energy and I feel great and I've learned
to you know, I'm taking awesome in physical therapy, so
that's been helping and just doing that, and the exercise
(23:00):
is in the massages and acupuncture. I've been trying everything. Man,
I've been trying everything, and sometimes I feel like it's verable.
Speaker 1 (23:08):
I feel like it does not, but I just hate
feel like a foreigner in my own body.
Speaker 3 (23:13):
It's just so stupid.
Speaker 4 (23:16):
But I am getting better because I know my strength
is coming back and I could walk, but you know,
sometimes I just my hands don't really feel right or
my legs. But most recently I went to I did
get to go to my neural disappointment and I got
an EMG last week. So last week, an EMG is
(23:38):
what the hospital told me that I would need, and
that will tell you what specific nerves are damaged.
Speaker 3 (23:44):
Okay, So I went.
Speaker 4 (23:45):
In and they electrocuted me everywhere, like basically it was
what it felt like, and just poke needles everywhere and
they I don't know how they do it, but I
just want to say, whoever is a doctor, like, kudos
to you, because like what will we do without them?
The fact that they could read little line like that
and just zap me right here and can tell if
my nerves or whatever. So, and I had been doing
(24:06):
my own research online, like so I have this this
perihthural neuropathy, and people online were saying like, I've been
dealing with this for eight years with no relief, and
so in my mind, I'm like, fuck, I'm gonna be
dealing with this for rest of my life. Like you know,
this girl has it and she she don't have no
cure and the man, this girl has it like, but
(24:26):
I got my AMG and then I was able to
get my results the next day, and so Donna came
to my house for the tele health appointment and he said, Kayla,
there's nothing wrong.
Speaker 1 (24:38):
There's nothing wrong. There's nothing there was like, your nerves
are great.
Speaker 3 (24:42):
That's great news.
Speaker 1 (24:44):
But again, but what the word is wrong with me?
Speaker 3 (24:46):
Exactly?
Speaker 5 (24:47):
Right?
Speaker 1 (24:48):
Exactly, So it was great news that like, there's nothing.
Speaker 4 (24:52):
Permanent, right right, there's nothing like that I can't recover
from from rehab and just medication and stuff.
Speaker 1 (25:00):
But then he was like, so we're going to send
you to a muscular neurology.
Speaker 3 (25:03):
Okay.
Speaker 1 (25:04):
So I'm like, all right, because clearly something is still
not right. We got to figure it out.
Speaker 4 (25:09):
Could it be like something in your muscle? I forget
what they exactly what they said, So that is pointment
is on the twenty first, So I don't know.
Speaker 1 (25:17):
That's where I am right now. That's that's literally all
I get s.
Speaker 2 (25:20):
I mean, I love the fact that you have such
a good team, a medical team that's like, okay, so
that didn't work.
Speaker 3 (25:26):
Now we're stting you here.
Speaker 2 (25:27):
Now we're sitting there as a roost like it's in
your head, go home, you know, like because I hear
that that happens especially to us as black women. So
it seems like you are really fortunate with the medical
team that you found in this foreign estate. And when
you said being a foreigner in my own body, that
really for me put exactly into perspective how you feel,
and that is very difficult to deal with, and you
(25:49):
do it with such grace, Like Kayla, you don't even
know how many times you've made me laugh during this time,
Like every time I message you, You're like, I'm about
to be the baddest girl with a cane or the
baddest out here with a cane. I don't care I'm
losing what You're about to be skinny ready for the summer,
Like I'm cracking enough. So it's like I'm even when
you're going through all that you don't feel good yourself,
you're still a remaining light to those who love you.
Speaker 5 (26:09):
Like you.
Speaker 2 (26:10):
When I see your name pop up my phone, it's
one of my favorite messages to receive.
Speaker 3 (26:13):
Some Moses' about to say, Now what is about to say?
Speaker 2 (26:16):
A lot of the times it's work, because that girls,
you work, but you are also just so funny, so light,
and I'm so happy that you're my friend, and I'm
so happy that you are getting the help that you need.
It's only a matter of time, Kalus, only a matter
of time. And you said, there's nothing permanent, there's nothing
that's going to be forever.
Speaker 3 (26:30):
So God is good. God is good. Yeah.
Speaker 4 (26:33):
And I also want to say also, like if one
this is it is Lupi's awareness month, so this is
kind of like perfect. But no matter what you have,
if anything I've learned in the process is to advocate
for yourself. And I just felt so naive, like just
going into that hospital and the doctor saying all these
(26:55):
big words to me and you know, not knowing how
to really comprehend what they were saying saying.
Speaker 1 (27:00):
And you know what my friend Brianna did for me.
Speaker 4 (27:04):
She went on chat cheat BT and typed in keom
Baret syndrome and lupus and what.
Speaker 1 (27:09):
To ask your doctor.
Speaker 3 (27:11):
Oh wow.
Speaker 4 (27:11):
And that was the smartest thing that added the entire
process of me being there, because chatchy BT came up
with all these questions that I could comprehend and then
articulate back to the neurologist and he was able to
answer all the questions like that Chat gave me, and
those questions were able to me and my mom at ease.
Speaker 1 (27:33):
So if you're in any situation like.
Speaker 4 (27:37):
Medically, like go to chat ey BT because you know,
because the doctors, like especially the neurologists like he was,
so I don't know.
Speaker 1 (27:46):
How to describe them.
Speaker 4 (27:46):
It's so nerdy and like the like they don't speak,
they're not they're socially awkward. So unless you'd speak to
them in their terms like or just ask them straight questions,
they're not going to give you more. Like I was,
I wanted them to say I'm gonna be okay, and
they would not give that to me. They I was like,
am I gonna be all right? And I think they're
not met it like legally allowed to say you're gonna
be okay, but there he was just like not giving
(28:06):
me any type of hope. So giving asking those questions
definitely helped. But yeah, so I just encourage everybody to
just to get checked out, don't ignore anything, And that's
what I did. Like I knew that my hands were
falling asleep and my feet were falling asleep and kind
of pushed it off for the sake of my birthday,
(28:27):
you know, And.
Speaker 3 (28:29):
I mean you did spend a lot of money on
my dress in the hair dollars, but no, you're here.
Speaker 2 (28:34):
But I feel like, so what would would you What
do you feel the difference would have been had you
gone sooner versus when you did go because you said
it was going to happen regardless, you said there was
something in your stomach.
Speaker 3 (28:42):
You said that.
Speaker 2 (28:43):
You know, they're still trying to figure out exactly what's wrong.
So do you really think that going a little earlier
would have made a difference.
Speaker 4 (28:51):
Probably, I think I wouldn't have been because at one
point I could walk fine. I was just tingling, So
maybe I wouldn't have lost complete mobility to the point
where I was walking on a cane for two weeks.
And yeah, so I think I could have caught it.
And then I got the id ig in my system
earlier to make me stronger.
Speaker 3 (29:11):
That makes sense.
Speaker 4 (29:12):
So yeah, yeah, but man, the amount of money that
has spent in medical bills over the past, like, oh
my gosh, this is just like it's just it's so frustrating,
and I'm still trying to ask God, like what is
the point of why like this literally stopped me in
my tracks for two months, for almost two months, and
maybe that's what I needed. And the doctors keep asking me,
(29:33):
are you stressed? And I was like no, like I'm happy,
Like really are I'm great with my job. I'm like
in a new relationship. Oh whatever that is, and I'm
doing like I'm happy.
Speaker 3 (29:45):
And I don't know.
Speaker 1 (29:47):
Maybe my body was under dress and I didn't even
know it. I don't know.
Speaker 4 (29:50):
So it just shows you just to pay attention to
your body. Don't go until you break. You know, even
though you feel like you have more in you, take
some time and rest because you might think up here
in your brain that you have more on you, but
your body is giving out. Yeah, but man, yeah it's
gonna be another a journey. I mean I have physical
therapy every week. I started taking stretching classes. You know,
(30:12):
I'm a pilates girl, but I can't do it yet
and that breaks my heart.
Speaker 2 (30:17):
But you're our favorite Lupis warrior, Like, thank you for
sharing your story. I know that's not easy, Like, thank
you for this vulnerability because we all see you as
so strong and you you still are so strong, Like
it doesn't take her from your strength in any way,
shape or form. But I know it's not easy for
you to be vulnerable or be seen as like, oh okay,
lot like you hate that. So I appreciate you you
sharing this and get up on the microphone because we
(30:39):
need our petty queen and we know what it's going
on with her body.
Speaker 4 (30:42):
Yeah yeah, So we'll be back next week with more
entertaining content, but definitely important, just just because it's Lupa's
Awareness month and there's so many other chronic illnesses that
people are dealing with that besides lupis. There's als, there's MS,
there's there's lime disease. And over the course of the
(31:03):
five years that I've had this, I've been able to
talk to so many people who have this stuff, and
you know, hear their stories and how they carry it,
and people carry it so different. Some people you can
see it all over them and some people you can't
see it all. So just remember to be kind to people,
be nice. You never know what anybody is going through.
And check on also your strong friends. And again, just
(31:24):
thank you so much to everybody who's been there for
me and called me.
Speaker 1 (31:29):
We love you, Kayla, love you too.
Speaker 2 (31:32):
Well.
Speaker 3 (31:32):
I guess we'll see you guys next week.
Speaker 5 (31:34):
By Tang Tang
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