Unmasking the Overlap: AJourney with Lupus and NMO

In this heartfelt episode of Lupus Has No Face, host Savannah Burks interviews inspiring guest Tynesha Hall, a resilient lupus and neuromyelitis optica (NMO) warrior. Tynesha shares her journey from her initial diagnosis of lupus in 2006, starting with minor knee pain, to her 2013 diagnosis of NMO, a rare autoimmune disorder that affected her mobility and vision. She opens up about her mental and emotional resilience, the importance of faith, faith-based support, and community advocacy. Tynesha highlights her lived experience with complex treatments like plasma exchange, coping with physical challenges, and the power of support groups. Her story emphasizes hope, strength, and the vital importance of self-advocacy and compassion for those living with invisible illnesses. Tune in for a powerful message of perseverance and community.

Thank you for tuning in to "Lupus Has No Face," a podcast dedicated to sharing real stories and insights on living with Lupus and other invisible illnesses. Join your host, Savannah Burks, as she explores the struggles and triumphs of individuals navigating their health journeys, all while juggling life's many challenges. Don't miss an episode! Subscribe, listen, and share on all major podcast platforms. For more content and updates, follow us on social media and join the conversation.

Episode Transcript

Speaker 1 (00:00):
M h.

Speaker 2 (00:04):
M m.

Speaker 3 (00:12):
Were ageeded.

Speaker 2 (00:15):
Hurt her street us.

Speaker 4 (00:26):
M m m m m.

Speaker 5 (01:20):
Thank you for tuning in to another wonderful Wednesday Lucas
has No Fast Podcast with your hosts Savannah and our special.

Speaker 6 (01:51):
Hold on. We having technical difficulties. Can you hear me?

Speaker 3 (01:59):
Yes? I can hear you.

Speaker 6 (02:00):
Oh, give me a second, Munn may have to.

Speaker 5 (02:03):
Re re do the thing because it kicked somebody out.

Speaker 7 (02:08):
Kay mm hm.

Speaker 3 (02:14):
H m h.

Speaker 2 (02:31):
M m.

Speaker 3 (02:39):
M mm hm.

Speaker 2 (02:54):
H m m h m hmm.

Speaker 6 (04:39):
Is that what.

Speaker 5 (04:50):
While he's figuring out what's going on? We can chat
if you want.

Speaker 3 (04:56):
Well, I can't, Okay, I can't now I didn't hear
what you sed to hear me?

Speaker 5 (05:02):
I said, while he's trying to figure out what's going on,
we can you can chat. We can chat because trying
to figure out what's going on. I don't know what's
going on here. Technical difficulties.

Speaker 3 (05:14):
Okay, let me see what do I want to? Okay,
So when we first come on, you're just gonna go
right into like about me, like I'm going to give
a brief description about myself or like how how we're gonna.

Speaker 5 (05:37):
Question so well, you gotta you gotta feel of what
it was gonna be like when we first get into it,
I was gonna you know how I said, thank you
for tuning in too. That's how I started off. Okay,
and then I'm say what I'm gonna say, and you know,
we're gonna have a little small talk and then I'll

(05:57):
be like, okay, well we can get right into it that.

Speaker 6 (06:00):
I'm gonna ask your question. That's kind of like how
that's gonna go. Okay, girls, easy.

Speaker 3 (06:08):
Okay, girl. I never did before. Oh my god, you
never did a podcast before. No, h no, no though, no, okay,

(06:36):
you froze. Yeah, you have froze at the end.

Speaker 5 (06:59):
Oh, I said, I said, don't feel bad. I bust
a lot of people cherious.

Speaker 3 (07:08):
Well man, so I'm about to get busted tonight, baby.

Speaker 5 (07:13):
And then when you and it's gonna be a normal
feeling when you get done, you're gonna like, oh man,
I should have said this or I should have said that.

Speaker 3 (07:20):
That's what I'll be saying. Yeah, that's normal. I hope.
I don't forget nothing. That's why I'm like, because I
do that all the time, like God should have said this.

Speaker 5 (07:31):
Yeah, and then you're gonna be like, dang, I should
have done or I should have and it's it's normal
because when you watch it tomorrow you're gonna be like,
oh God, because there's no right or wrong way of
telling your story. This is your story, you know what
I mean.

Speaker 3 (07:48):
You live this.

Speaker 5 (07:49):
It's no better person to tell it than you.

Speaker 2 (07:54):
Right.

Speaker 3 (07:54):
Yeah.

Speaker 5 (07:55):
Do you want to make your story sound boring? That's
one thing you can do. Or do you want to
have your story to be have people to sympathize and empathy.
What's your story and be detailed and descriptive and have
somebody learn from what niche and told them about norm
whereas the Normandy is.

Speaker 3 (08:15):
Optical, new woralmid light is optica. You went away against.

Speaker 7 (09:24):
School sto.

Speaker 3 (10:57):
Hey you mean yes?

Speaker 2 (11:00):
Oh h.

Speaker 6 (11:06):
M hm, I look great over here, so we have
to switch studios.

Speaker 8 (11:17):
Oh my son texting me, I feel I look like
I'm dull and old.

Speaker 9 (11:38):
And you got me on the wrong side of the school. Yeah, well,
don't you know what I'm talking about? My things going crazy?

Speaker 6 (11:56):
I'm sorry about this.

Speaker 3 (11:59):
Yeah, it's okay, it's time.

Speaker 6 (12:00):
Ever actually happened.

Speaker 3 (12:04):
I'm trying to think should I turn it sideways like
this or have it up and down? Let me see.

Speaker 6 (12:12):
You said turn it sideways.

Speaker 3 (12:15):
Okay, wait like this, yeah, hold up? Mm hmm.

Speaker 6 (12:49):
Boom boom boom boom boom.

Speaker 2 (14:00):
Kah.

Speaker 6 (14:04):
So what were you saying before we got booted out again?

Speaker 3 (14:14):
I can't even reamber look say that, right, I ain't
got time for not remembering.

Speaker 6 (14:20):
So is that that brainfall though?

Speaker 3 (14:23):
Right? Okay?

Speaker 2 (14:24):
Oh lord, okay, I'm.

Speaker 3 (14:34):
Glad you got confidence and yeah.

Speaker 4 (14:42):
M hm.

Speaker 2 (14:47):
H m.

Speaker 3 (14:58):
And then you saying how we're gonna end it off?
You said we were gonna end it off.

Speaker 5 (15:05):
I probably ask you, is there anything you want somebody takeaway?
Will be your takeaways? You know, last regard something you
want to leave somebody with that that sits on their
brains for them to think about.

Speaker 6 (15:23):
Something in relies to that.

Speaker 5 (15:25):
Okay, I'm gonna actually drop your tags, you mean, like
your social media tags where they can follow you. If
you got like I don't know, websites you got, you know,
something that's going on that you want more clients to
a ten or you want to build up follower on

(15:47):
some super platform or you know, you having something in
your city you want them to attend to donate whatever.
I'm gonna ask that at the end as well.

Speaker 3 (16:00):
Okay, I'm trying to think wrestler shot. Do you know
her group thing for the.

Speaker 9 (16:12):
What is it.

Speaker 3 (16:15):
For her team? Like to donate? I can't even think
of the name her team All the Walk, right, but
how people could donate to?

Speaker 5 (16:27):
Oh, you know what, you can send it to me
and I can have him put it up on the
screen so when you speak on it, I can put
it up and let people know, you know, if that
has the information on there or not.

Speaker 3 (16:43):
Okay, let me go to Let's see cause I know
she all Russian stars, so they could donate to Russian Stars.

(17:17):
I'm gonna send it to Kay. They could donate or

(17:46):
they could go to Lupus Society of Illinois or the
Lupus Walking Naperville August night. Okay, I got to remember
that date, August Night. Let me make sure that's the taste.

(18:07):
Yeah obviously?

Speaker 6 (19:00):
Oh okay, Niche, did you send it to me for
the walk?

Speaker 9 (19:07):
Uh?

Speaker 3 (19:08):
Huh? All the I just sent the Russian stars name? Okay,
All the Walk. Let me.

Speaker 6 (19:18):
You can send that to me and we can we
can start. Don't know, Okay, do you tomorrow? What's the
ice cream in?

Speaker 3 (19:27):
H M? See?

Speaker 6 (19:30):
Let me I'm gonna do a boat rock.

Speaker 1 (19:33):
Wh Yeah, where is the rocket because that's not it?

Speaker 3 (20:16):
Except simper.

Speaker 6 (20:19):
Right, what's going on? I'm going on? Oh?

Speaker 3 (21:01):
Okay, m h.

Speaker 6 (21:10):
Did she you ready?

Speaker 3 (21:12):
Okay? I just sent you yeah, I just sent you thing.
Let me get off from here, go back? Okay, what
about now? Am I? Okay?

Speaker 6 (21:30):
Yes? You are beautiful?

Speaker 3 (21:33):
Where are we? H?

Speaker 2 (21:38):
You are okay.

Speaker 6 (21:41):
Talking? I'm mad?

Speaker 5 (21:42):
I don't got my thing up? But man, was her name?
My screen? Tell you nobody the green screen?

Speaker 7 (21:54):
H m hm.

Speaker 3 (22:34):
Oh lord she marker. Somebody must have come in though.
I hope all got the sneeze of a coffin.

Speaker 2 (22:59):
M trying to keep my cool back going all.

Speaker 3 (24:47):
Ou branweted lern Her Street us.

Speaker 4 (25:08):
M m.

Speaker 2 (25:17):
M m.

Speaker 4 (25:26):
M m.

Speaker 1 (25:30):
M m.

Speaker 2 (25:36):
M m.

Speaker 4 (25:43):
Mm hmmm mmm mm hmmm.

Speaker 5 (26:08):
Hello, thank you for tuning in to another wonderful episode
with your host Savannah or Lucas has Long Faced Podcast
What our wonderful special guests Niche. We will be discussing
unmasking the overlap and journey with Lucas and n m O.

Speaker 6 (26:29):
And for those that do not know what that is,
that is called normal neural my lightess.

Speaker 3 (26:39):
Yeah, new my light is optica normal light.

Speaker 5 (26:41):
Is optical, she said a little faster than me, so
it sounded right. Okay, So listen, y'alln't even know what
took place behind these scenes. Okay, y'all don't even know
what took place behind the scenes.

Speaker 6 (26:57):
It's a lot going on. I'm going off. Today is
only Wednesday, hop day. Okay.

Speaker 5 (27:07):
So we had a lot of you know, but we
were good, right, Tom, We're good. That's that's what you
call life.

Speaker 6 (27:15):
Okay.

Speaker 5 (27:15):
We did a lot of pivoting. Okay, what about you?
Did you have any mishaps today? Did anything not go
as planned?

Speaker 6 (27:25):
And if so, what did you do?

Speaker 4 (27:28):
Oh?

Speaker 3 (27:28):
Lord? Well, I'm just getting back from LA from the weekend,
so I've been still sleeping, trying to recover. I went.
I'm part of the Guffy Jackson Foundation with people with NMO,
so I got a chance to network, talk to doctors,
ask questions. So it's overwhelming, a lot of stuff, a

(27:52):
lot of conferences, meetings, but I enjoyed it, had a
good time and new people, got a chance like a
speak with doctors and everything. So just trying to recover
from that. But I'm good and I have to work today,
so I've been chilling after.

Speaker 6 (28:10):
That, you always got to get to the bag. Yeah,
get to the bag back.

Speaker 3 (28:21):
Yes, that's do.

Speaker 6 (28:23):
So let's jump into it.

Speaker 3 (28:26):
Who is is niche?

Speaker 6 (28:27):
Who is niche without the dinosies?

Speaker 3 (28:33):
Niche is a quiet person, quiet, loving, a sharing person.

Speaker 7 (28:44):
Kind.

Speaker 3 (28:45):
I'm a listening ear to others. Like you know, my
friends have called me, I'm I'm that person that they
could vent to talk to without no judgment. I'm listening
to hear. I'm laid back, laid back and chill. Laid

(29:06):
back and chill. I try not to get to ride
up or you know, stressed out about things. So that
that's me. And then I am a church going person.
I do at tend Church, God's Congregation, worship Center and
Lombard so I'm a faith believer as well.

Speaker 6 (29:29):
Period.

Speaker 5 (29:31):
Yeah, those are all dope things, and I must say
I had the privilege of encountering some of those dope
churistics and personality traits. So thank you, thank you. So

(29:52):
we're gonna jump into a little background, right, So can
you take us back to the beginning. What were those
first signs or symptoms that something wasn't right before your
loop is diagnosis in two thousand and six.

Speaker 3 (30:12):
Well, two thousand and six. That's when it all started.
And me and my friend always make a joke about
this when people asked me. Two thousand and six is
where it all started. I started getting symptoms of just
knee pain and the swelling of my right knee. I

(30:33):
was going back and forth to the doctrum, like my
knee is hurt. It just keeps swelling. They was like, oh, okay,
it's just arthritis. You know, maybe you could take some
ivyprofen or something that helps with inflammation. So I started
doing that. The symptoms started getting worse, just with my knee.
It was getting hot to the touch, like really swollen.

(30:57):
I was lifting. Went back to the doctor. They did
more blood work and that's when they diagnosed me with lupus.
And at that time, they put me on medications, sterroids
and plaque with nail things like that just to you know,
keep the loopings under control. And I had to go

(31:18):
see a rheumatologist, so at that time I was Once
they put me on the mass, I did pretty good
from it. Just had chest pains, arthritis symptoms, but nothing
too major. Nothing too major with the loopus.

Speaker 6 (31:34):
Okay, So that's that's really dope.

Speaker 3 (31:35):
To here.

Speaker 5 (31:36):
So you're this is the first story that I've heard
that it wasn't too major. So you was basically just
having knee pain and they diagnosed it right away. You
didn't have to wait for years. You didn't, you know,
have no scary moments where you know you had the
faint or anything like that. You just it was a

(31:58):
want and done basically basically.

Speaker 3 (32:00):
Yes with the loopers, Yes.

Speaker 5 (32:03):
Okay, and it all was just something so minor as
a knee pain, swelling and hot to the touch.

Speaker 6 (32:10):
M hm.

Speaker 3 (32:12):
Yes.

Speaker 5 (32:13):
It's very important to you guys to if something is
wrong with you and it's not your normal, go to
your primary care provider and start there. You not ignore,
because something so minor like that can be something so
huge it can cost.

Speaker 2 (32:27):
You your life.

Speaker 6 (32:29):
So my apologies, y'all. That's how I stay organized.

Speaker 5 (32:33):
I got alarms off all the time until we want
to stop doing things when it start a different projects,
so I have alarms go off all the time. My
producer will tell you, like, go off all the time.
So how old were you when you got dianosed?

Speaker 3 (32:52):
I was twenty six years old and I got diagnosed.

Speaker 6 (32:57):
Yes, And did they give you a reason why or
what triggered.

Speaker 3 (33:02):
It or had no clue at all. And I was
the first one in my family. It wasn't a genetic
or anything like that. I was the first one in
my family that was diagnosed with lupez. I have a
niece now that ended up with lupus, but I was
the first one in my family that they had no

(33:24):
clue on how it started. I was the first one.

Speaker 5 (33:31):
Right, How did you react emotionally and mentally receiving that diagnosis,
especially at a time when lucas was less widely understood, Right,
So that was my.

Speaker 3 (33:43):
First time ever hearing about loupez. So it really didn't
affect me emotionally or mentally because I was, like I
still looked at it as an opthorritis thing. Like I said,
I didn't have any thing major going on with my
organs or anything like that. So it was basically the pain,

(34:06):
the arthritis, joint pain. So mentally I was I was
fine with that. Mentally took you know, pain pills if
I needed to if I was in pain, and you
don't stayed on my steroids and the plaqueel for that.
But mentally I was fine.

Speaker 6 (34:26):
So I being the fact, that being the fact that.

Speaker 5 (34:32):
Majority everyone that I met has lucas and real mature authorritis.
I'm going to say they almost gond they do go
hand in hand.

Speaker 3 (34:42):
Mm hmm. Yeap, that is definitely do.

Speaker 9 (34:46):
Yeah.

Speaker 5 (34:47):
I think it needs to be some type of study
on you know what I'm saying, like what causes it,
because we still don't know what causes lucas to this day.

Speaker 3 (34:56):
Mm hmm.

Speaker 2 (34:58):
No.

Speaker 3 (34:59):
A lot people was mith diagnosed with it, like, you know,
not knowing Like I said, first, I was diagnosed with
just after writings and just sending me home in paint
pills and finally after more blood work than loopus and
I'm like loopis, like I didn't know what it was,
so yeah, I never heard of it.

Speaker 5 (35:23):
So when you got diagnosed with it, did you start
educating yourself? Did you ever accept it? Have you accepted
to this day?

Speaker 3 (35:30):
I accepted it, yes, And at that time I really
didn't research it that much, like I just Okay, I
got it, fine, let's you know, go through the mass
do what I got to do. I really didn't dig
deep into it. And maybe because the reason why is

(35:54):
because of the symptoms that I had. Maybe if I
had more symptoms that are you know, that was affecting
my organs or whatever. Maybe I would have, but since
it was something minor, I didn't.

Speaker 5 (36:10):
Okay, so you feel that you was affected more or
has some extremely its more activity going on with their body,
then you would have been like, let me look to
seeing what this is.

Speaker 3 (36:21):
Right, yes, yes, so I really didn't educate myself at
that time.

Speaker 6 (36:26):
No, okay, okay, that's something good to know.

Speaker 5 (36:31):
It being so mild as to why people wouldn't educate
themselves versus being extreme.

Speaker 6 (36:37):
So that's that's that's something that's good.

Speaker 5 (36:41):
Fast forwarding to twenty thirteen, you were dinosed with neuromlight
is optical, which is NMO. How did the second diagnosis
impact you, especially after already navigating lupus for several years?

Speaker 3 (36:58):
Now this right? Yeap? Oh my, Now that's when sign like,
oh yes, now I'm googling everything I went. I reverted
back to the loopers this ab Now I won't know

(37:19):
about the loopis, I won't know about everything. So with
the new wald my light of optrica, I got diagnosed
in twenty thirteen. Twenty thirteen, I started getting really bad headaches.
I was taking when I say, every counter drug pill

(37:41):
for pain. It was I was taking etc. I was
taking BC's, I was taking time. I was taking like
when nothing stopped these headaches. And they were ongoing headaches
for days at a time. And then I started getting
you know, don't want to grow to somebody out, but

(38:02):
started getting mucus coming out of my eyes. I was throwing. Oh.
My mama like okay, we're gonna go to the doctor.
I went to like an immediate care. They was like, oh,
you just gotta saying this infection. Send me home with claritan.
Went home, started taking the Clarity. I was getting worse.

(38:22):
Headaches were getting worse, growing up, was getting everything, was
getting worse. Went back to the doctor. They was like,
oh yeah, it's just an affection. Starting started me on antibiotics.
I started taking antibiotics and the Claritan. I was getting
worse on any biotics. So my mama like, no, m mmm,

(38:48):
so I ain't right. We're going to the emergency wrong.
So I went back to the emergency room and they
was like, Okay, we're gonna admit you because you're right something.
So I'm not right. So they thought I had menegitis,
so they had to do a spinal tap on me.
They did the spinal tap, and I remember after the

(39:11):
spinal tap, I was like out of it, like going
in and now cause I was like halfway s you know, sleep.
They have put me to sleep and so all I
remember telling the doctor, well the nurses, I'm like, I
need to go to the bathroom. I need to use
the bathroom. And they was like okay, you know, they

(39:32):
went to get another nurse. They was like, okay, let's
help you to the bathroom. I went in the bathroom
and I was like, I I can't use it. And
they was like, try to push, miss Hall, try to push,
you know, try to pee. And I'm like I'm trying
and they was like, no, push, push, miss Hall. You know,

(39:54):
you need to pee so we could get you back
in the bed. And I'm like, I'm trying to pee.
I cannot pee as I'm on the toilet. They was like, okay, well,
let's just get you back in the bed and we'll
try again. I tried to stand up. Everything waists down
shut down on me. I couldn't walk no more, I

(40:18):
couldn't pee, I couldn't do anything. Waist down. So they
had they ran got the doctors, got help carry me
to the bed, and after that, I don't remember nothing.

Speaker 6 (40:32):
After that.

Speaker 3 (40:33):
It was like I went back to sleep because whatever
was going on was making me so tired, and I
went back to sleep. I don't remember nothing until the
next day when I finally woke up and realized I
couldn't walk anymore. And I'm like, okay, I can't walk.

(41:01):
It'll be all right, I'll start back walking in two
days or three days or whatever. You know. That's that's
that was my mindset. Like it didn't. It didn't hit me,
it didn't did nothing bother me at that time because
in my mind, I'm thinking I'm about to start back
walking in a day or soul. And so they run

(41:23):
a test, they doing blood work, and you know, I'm
still fat. And they was like, I'm at one hospital
out and down in this grove and they like, well,
miss Hall, we're gonna have to transport you to University
of Chicago because whatever's going on with you, we don't

(41:45):
specialize in this. And at that time, they was like,
you know, we think it's some called transverse my lights,
and but we need to hurry up and transport you.
So I'm still and I'm like okay, cause I'm still thinking,
after they give me some ads, I'm gonna be walking

(42:07):
and go. They transport me to University's Chicago and they
run a test. They you know, now they're giving me
how dosag just steroids, giving me plasma exchange, doing mririse
on me. And that's when they finally told me, you

(42:27):
have a condition called newor my life is optica, which
are these anybodies you know that was attacking me? And
I stayed in the hospital over a month in the hospital.
Then they finally transported me to rehab, which I was
at Barry enjoyed rehabilitation, and it still didn't hit me

(42:52):
that I couldn't vote. And I'm like, when my dad
and my mom finally came to see me, I was
in the rehab and they was about to leave me there.
They came and saw me, and they left me. You know,
they was about to leave me. And that's when it

(43:12):
finally hit. And that tiar you talking about tears on
booho and crying, that's when it finally hit. I'm stuck
in his rehab and I can't walk, and I'm like, okay,
it's been over a month. I couldn't move, no toes,
no leg no nothing, and they hit me. And that's

(43:39):
when I started. I guess that's when I started researching
at that time. But it's this condition I have, What
is going on? What did it come from? It took
a month before I was able to even move one toe,
and that was my right toe. It took a whole

(44:01):
month before I was even able to move that. I
stayed in rehab for over three months, and by the
time I was released to go home, I still couldn't walk,
still couldn't walk, but I didn't let it get to me.

(44:23):
Like I love to laugh, That's one thing I do.
I love to laugh. So it's like I'm still trying
to make the best of what was going on. I'm
still trying to laugh and still be happy. And you know,
even though I was in this situation, it was like

(44:45):
I still didn't try to let it depress me and didn't.
Like I said, it didn't hit me until I got
into rehab and my mom and my dad left that day.
It didn't hit me until then, but I I still
didn't let it get me down. And with the new
one of my life, I afterget like I said to

(45:06):
ninety days before I could even move one to I
went home still could walk just being on mass my
mother and like I say, I know my strength comes
from my mom. Well, first I'm gonna give it to
God God first, then my mom because she is very,

(45:27):
very strong. At that time, my mom was battling cancer.
Before I went into the hospital, I was taking her
back and forth to her chemo therapies. Now I'm at home,
can't walk. She's helping me while she's still going through
chemo therapy. So it was like we had to beat
each other's strength, you know what I'm saying at that time,

(45:51):
and even my voice and like I say, God, you
wonder why, Like I got twin sons, there'll be twenty seven.
And I always just wanted, like how I end up
with twins? Like I end up with twins. That's when
I'm thinking, like twins, like out of me, ain't nobody
else got twins? And tough for my auntie and my uncle.

(46:11):
Nobody else got to why I got twins? And now
I see why God blessed me with those boys because
when I got out the hospital, like I said, I
come walk, So I had to wrap myself up, you know,
cover myself up. My boys had to pick me up,
like a like a hog one end or one boy

(46:34):
on this end, the other point on that end, carrying
me to the bathroom to put me on the shower.
Then my mom in there, you know, helping me. So
now I see, you know, God blesses you with what
you need. So I'm like, that's why I got these boys,
because they've been my backbone, you know, through it all,

(46:55):
they been helping me. And with the newer of my
Light of Africa. Been blind twice in the right eye.
Thank god it came back. I've been blind twice in
the right eye. I didn't been on every treatment there
been for this condition. I started off with with tuxon

(47:17):
mad to sell us up to Michael Fillinate to it Spring,
to UPLANDSA to Solarius. Now I'm on Altimerus. I broke
through every treatment there was for this condition, and meaning
that I'd be on something. All of a sudden, I

(47:41):
get a new lesion. I'm back in the hospital because
now I can't walk again, like I was able to
start taking steps with the walker at home and in rehab,
and then I get a new lesion. It might be
at my spinal corps. I got one in my neck

(48:03):
and wherever those legions come affecting my mobility. So when
it affected my mobility, I ended up back in the
hospital for at least three to four weeks getting treatments again,
a plasmas, change, the high dosa, just steroids and getting

(48:23):
those treatments. Then back in rehab I'd have been in
every rehabilitation center. I'd have been in nursing homes like
this condition here sung me through the wammie. But that
was the devil trying to defeat me. But I never,
not one time I said, Okay, we're gonna do what

(48:44):
we got to do. I'll be back out. You know,
I'm still laughing and playing like I said, because that's
what I love to do. I'm in the hospital doing
my lashes because you know, before I went in the hospital,
I was a licensed esthetician.

Speaker 5 (48:59):
So that so let's let's go back for a little bit.
When you got dinosed with normal lightest optical in twenty thirteen,
you was okay until your parents had to leave you
in the rehabilitation center. So that's when it triggered you, right, Yes,

(49:20):
So at that time, did you think about the loopis
and the the the normalist NORMD lightest optical Lord I
can't talk optical at the same time or was that
just your main focus?

Speaker 3 (49:38):
At that time? That was my main focus because what
I was going through I couldn't understand, like what is
this condition? I guess I really did revert back to
the loopis because at that time the loopis was just

(49:58):
like an arthritis thing, you know what I'm saying, So
it really didn't it really still not clicking at you
know what I'm saying at that time. It didn't click
to me until I started asking the doctors, and that's
when they said, you already had one autoimmune condition, so

(50:18):
that's probably a reason why you got the second. So
now the loops and a new road clicked to me
both at the same time. When the doctors told.

Speaker 6 (50:29):
Me that is it hereditary?

Speaker 2 (50:33):
No, like.

Speaker 6 (50:38):
You got it? What could have possibly caused it?

Speaker 3 (50:43):
Only thing they told me was by me already having
one auto imune condition is the reason why a second
one came? Like you're prone to get a second autoimmune
condition because you have one already, But no nobody had
the loopus. So definitely nobody had new romindlight is Africa

(51:06):
in my family.

Speaker 5 (51:07):
And I truly believe that because a lot of warriors
have multiple invisible illnesses. The loops be the umbrella, the
start of everything, right, and then it be you know,
one thing after another.

Speaker 6 (51:20):
Some people have two. Some people got five autoimmune diseases.
So I can believe that.

Speaker 5 (51:27):
Exactly for sure, we're going to get into living with
the autoimmun conditions. So, like, what are some of the
day to day challenges you face living with both loopus
and Emo in Emo.

Speaker 3 (51:45):
Nemo, Well, my main challenge that I face is my independency.
I miss being fully independent. That that's one of my
main things, you know, just having to ask for help

(52:07):
or get help, having to get ready two hours in
advance when I was getting ready an hour in advance,
you know, make it. It's like I have to prepare
myself and prep myself the night before the day before

(52:28):
just to make sure I can possibly get ready into
hours and probabe them. Two hours probably include me still
trying to make myself look presentable, do my hell, do
my makeup? So I include that in the two hours,
but right exactly, and as I am, you know, I'm like, Okay,

(52:53):
I might be disable, but I can still fix myself up.
But yeah, it's it's my end of dependency. I would
say that that's really a challenge, you know, because I
always been independent and try to do things on my own.
So now it's like even now, I hate to even

(53:15):
ask for help, you know, but it's like okay, a
NISSI to bite your tongue, you know, let the pride go.
You know you need help, so you know I have
to ask for it. So but I try to be
as much as independent even though I'm in this situation
as possible. Like I say, I prepare myself, so I

(53:41):
try to get my clothes together, try to you know,
make sure everything is in order for me, so I
know what I have to do and be in you know,
be independent. Now I might ask somebody help me for
my shoes on, especially if I'm trying to wear some
Q shoes for church now, so I'm like, ask for

(54:02):
help then. But for the most part, when it's my
self growing, you know, I'm independent, I still need assistance
on other things. So I think that's my biggest challenge
is losing moth for independence, dealing with the disability.

Speaker 5 (54:24):
Would you say because you and your words, bite your
tongue and put your pride down, would you say that
you haven't fully accepted what you have.

Speaker 6 (54:36):
Because you don't want to ask for help.

Speaker 3 (54:41):
So I accepted what I have. I know this is
a new life for me, and I had to accept that.
It was hard at first, but I learned to accept it.
I would say, it's still reverts back to that independence
knowing that I have to ask for the help versus

(55:04):
when before when I didn't. When I was fully independent,
I could figure it out more so on my own.
So now it's like, Okay, I know I need help,
so get the help that I need. And I got
a good support system, so they try to help me

(55:25):
before I ask for the help. But it's just still
you know, that's one of the things, just asking.

Speaker 5 (55:32):
What makes you feel that you don't want to ask
for help, knowing that you need the help and knowing
that you have a great support system.

Speaker 3 (55:39):
Because I want to be as much as independent as possible,
Like I don't want this disability to take away my independence,
Like I still want to be have to feel like
I had there for independence.

Speaker 5 (55:59):
So okay, I totally understand what you what you're saying
with that, But for the most persons, seem like you
are independent because you do more.

Speaker 6 (56:06):
The jury of it but so it is not putting
on your dang on shoes.

Speaker 3 (56:15):
I know, how how do you.

Speaker 5 (56:24):
Balance your physical health with your mental and emotional well being?

Speaker 3 (56:32):
The number one thing I would say my my faith, church,
praying those those are my first and most important things.
And my support system and my support groups like being

(56:54):
with other individuals that's going through the same thing I'm
going through. So I do attend the Rush Loopis support
group which Lashan Garula hosted. She was my first support
well lupis support group that my brother connected me with

(57:16):
because he works at Amhers Hospital with her and he
connected me with Lashawan. So that was my first Loopis
support group. Then I brought it out. I started attending
the Spinal Cord Injury Support group and Mary and Joy.
Now I'm part of the Gutty Jackson Foundation and the

(57:38):
More Women's Support Group. And so just having no support
groups and being able to speak with other people that's
going through the same thing that you're going through that
that helps you mentally as well, so you don't feel alone.
You know, I know I'm not a no I know

(58:00):
I'm not the only one going through this. I know
I'm not the only one that have bed days you know,
so just having that support team that supports system, that
helps me mentally, and like I said, God first, that
that helps me mentally, and my friends also and family,
so you know, because they're not They're not gonna let

(58:22):
me have a pity party for myself, so that that
helps me.

Speaker 5 (58:27):
That was one of the oness that I was gonna
ask you when I'm I interview doctor and Shaun Garola
or no, no, I didn't interview her, but no, that's
not where it came from. It came from Levita. I
interviewed Levita and she were talking about the support groups,
and I was going to say that, like, have you
found yourself being in a support group that's more so.

Speaker 6 (58:51):
Whiny and having a pity party versus trying to come
to conclusion.

Speaker 3 (59:01):
I have been in support groups where other women were
whiny and you know, felt sorry for theyself and stuff
like that. So and the other women would just uplift
that person, you know, try to make that person feel

(59:22):
more confident about theirself and you know, just helping to
uplift them. But yeah, I have been around other individuals
that have been like that.

Speaker 5 (59:34):
Do you find being in those type of support groups
that like that I'm trying not to use the word whining,
but that's what we're gonna go right now.

Speaker 6 (59:47):
Do you find that.

Speaker 5 (59:49):
How do you find yourself navigating around that when you're
coming to the support group to be uplifting yourself and
to have help and to navigate better than what you
came in with versus leaving out.

Speaker 3 (01:00:08):
Well For me personally, I'm not I don't consider myself
a Debbie downer. So I don't let that try to
get in my mental or try to because it can.
I feel like when you're around that, it can't affect

(01:00:29):
you mentally if you let it. If you let it. So,
like I said, I didn't been around it, but I
don't let it get come to me in effect my
my mental state.

Speaker 6 (01:00:42):
You have a strong mindset.

Speaker 3 (01:00:45):
I Murder's talk is my mama, Okay, So I can't
do nothing but have that. I that by I set.

Speaker 5 (01:01:02):
Because a lot of a lot of undisabled people do
not have a strong mindset. So I applaud you on
that and keep doing what you're doing. Have there been
moments where you felt like giving up? What helped you
push through those dark days?

Speaker 3 (01:01:21):
If so, I would say give up, But I would
say I did have my my down days, not the
present days, but I didn't have my down days me
just staying you know, like I said, prayer first. If

(01:01:46):
I needed to reach out to a friend you know,
to talk to and we laugh and Joe, you know,
sometimes I even make my situation where I could laugh
about it. You know that that helps me. And just
if I go around to be around my mama, I'm

(01:02:08):
gonna instantly get up at that moment. So that helps
me as well. And like I say, I have my
church too, Like I have a good support system when
it comes to my church, they pray for me. They
anytime I was in the hospital, you know, my pastor
and my first lady would come visit me, other ministers.

(01:02:31):
So just having that faith helps help me get through,
you know. So I'd be like, Okay, God, I'm having
a bad day today. You know, I'm a little down.
Let me pray, Let me phone up a friend, let
me you know, to help get my mind back right.

Speaker 5 (01:02:50):
I love how you you your resources to get you
back together. That being having that duel awareness and stuff
for is so that is so amazing. You can tell
you the work.

Speaker 6 (01:03:06):
Yes, yes, I want to go back to just a tad.

Speaker 5 (01:03:12):
Little bit for people that do not understand what plasma
receiving plasma transfusions.

Speaker 2 (01:03:20):
Is.

Speaker 5 (01:03:20):
So we're going to put up a couple of photos
and I just want you to tell me the moments
and what actually were they doing in these photos. You
can start with number one, it don't matter because just
whichever one.

Speaker 6 (01:03:37):
So what do we have going on? Right here? And
you look beautiful by the way, I mean here.

Speaker 3 (01:03:50):
So right here, I had two ports. I had a
port on east side in my chest which were actually
plasma exchange ports.

Speaker 6 (01:04:00):
It's a change, I'm sorry, I said.

Speaker 2 (01:04:04):
Change.

Speaker 3 (01:04:05):
Yeah, So I had they inserted poursing me that was
just specifically to receive the plasma exchange. So I would say,
it's almost like a former dialysis. So they were removing
my plasma and my blood coming through one tube and

(01:04:27):
exchanging it for a new plasma going into the other tube,
and then at their end they would put all you know,
put my blood and stuff back in. So basically, yeah,
that's all I was gonna say. The purpose of it
was because in my plasma with the new romantis optica

(01:04:51):
lived to anybody's, so they were trying to remove as
many bad anybody's that was attacking attacking me, try to
remove as much as as many bad anybody's out of
my body and putting the new plasma in. You know,

(01:05:12):
that didn't have any anybody's So I had got that
like every other day, maybe like or five treatments. But
they could only do it every other day because it
will you know, it will wipe you out.

Speaker 6 (01:05:30):
Okay, can we go onto the next one on phone?
So what is going on right here?

Speaker 3 (01:05:37):
So this was me receiving the plasma change. And if
you could see the bottles that's to the right, those
were like six bottles of the plasma. So they would
remove some plasma out and then put one bottle back,
you know, one bottle in, and then keep removing it

(01:06:00):
out and then keep putting the put each bottle back
into my body with new plasma.

Speaker 6 (01:06:09):
Were you awoke in this process?

Speaker 5 (01:06:11):
And also, I see does it have to I see
how your body is kind of like downwards right?

Speaker 6 (01:06:18):
Do you have to be like in that position in
water for this process to go on?

Speaker 3 (01:06:23):
Yes, you do have to be laid in a certain
position while they're doing the plasma exchange. I was woke
for only really side effects. I felt was maybe a
little light headed. You have to stay you know, hydrated,
drinking water and stuff like that. I couldn't eat though,

(01:06:46):
why they was doing the exchange. I couldn't eat, but
I can't drink water to stay hydrated. But you do
have to be laying in a certain position.

Speaker 6 (01:06:59):
And how long does this take?

Speaker 3 (01:07:03):
It just depends on how your body is reacting to it.
And they can't run a machine too fast, like they
could only go at a certain pace, and just depending
on how your body reacting to it, and depending on
the machine, because we would have machine issues where now

(01:07:30):
they have to run a machine really at a slower pace,
so it could take anywhere from I would say two
to four hours. Okay, just depending that's not bad. And
that was every other.

Speaker 6 (01:07:46):
Day, every other day.

Speaker 5 (01:07:49):
Okay, let's go to the next spot zone. So what's
going on right here? The import that's in your neck
right right?

Speaker 3 (01:07:58):
Yeah, So the ports that I had in my chest
wasn't working correctly. So now they had to insert the
ports into my neck in order to do the plasma exchange.

Speaker 6 (01:08:14):
So what was not working correctly?

Speaker 3 (01:08:18):
The ports that I had got inserted into my chest
wasn't letting a plasma flow correctly like it needed to
be at a at a smooth pace. I would say,
at a smooth place. My ports wasn't functioning right, so
now I had to convert back to the ports being

(01:08:40):
at my neck, so they would take me down to IV. No,
my neck. I was woke even when they inserted the
ports into my neck. I was woke for that and
not IV. I'm sorry, I are they were.

Speaker 6 (01:08:59):
I was they woke.

Speaker 3 (01:09:00):
They would just not my neck, make decisions in my neck.
And I think it was like three different two or something, no,
three different lines that they would insert into my neck
and down through somewhere about the heart that they would.

Speaker 5 (01:09:22):
Have to, you know, insert those lines by okay, And
how long did it take for you guys to notice
that it wasn't properably running through your breasts?

Speaker 3 (01:09:34):
When they was trying to do the plasma exchange, the
machine kept malfunctioning, like the machine would start alarming and
which was telling them something wasn't right. So that's how
they knew that, Okay, we can't do these you know
in her chest. We're gonna have to insert new lines

(01:09:55):
through her neck. So the machine, which was a good thing,
the machine alarmed them so whether you're going through or
nothing didn't go through.

Speaker 5 (01:10:04):
So yeah, that's how I was, like, I thought you
wasn't laying that way for hours until they figured out
it wasn't working.

Speaker 3 (01:10:11):
Right that you know, that machine went off, So let's
then what it.

Speaker 6 (01:10:15):
Was supposed to do. Let's okay, what is going on?

Speaker 3 (01:10:21):
Is it?

Speaker 6 (01:10:21):
Is this when you first got them?

Speaker 2 (01:10:26):
No, that that was.

Speaker 3 (01:10:30):
Right right after I got him inserted. So this just
basically a better picture where you could see, you know,
where the lines are at, and those green things those
are the caps. They unscrewed those and put one line
on one, one line on the other, so as one
going in, the other ones coming out.

Speaker 6 (01:10:51):
Okay, do we have another? I think we got one
last one?

Speaker 3 (01:10:56):
And what is this?

Speaker 6 (01:10:57):
Look? Just giving face, giving face, it's such a good mood.

Speaker 3 (01:11:07):
Yeah, just basically the you know the same thing with
the with the forests.

Speaker 6 (01:11:12):
Yes, so this is very you. You have taught me something.

Speaker 5 (01:11:18):
I mean, I've heard of plasma and change, but not
to this extent. So you learn something new every day, right, Yes,
So that's going to lead us right over to advocacy
and community. So you're at you're active in the LUPUS community,

(01:11:43):
and participating in Lupus walks. What drew you into advocacy
and volunteer work?

Speaker 3 (01:11:50):
So what drew me? Like I said, I started with
Rush Lupus Support group with doctor Lashawn Garulo. It's so
she I started doing my first walks.

Speaker 9 (01:12:04):
With the.

Speaker 3 (01:12:06):
With Luca societya Illinois. And at that time I was
walking on the walker. So I do you know so
many I ain't gonna say miles because no, I didn't
do them so many, so many feats whatever, I did

(01:12:28):
so many feet with walking, uh, with the Lupers walk.
And so she inspired me. She said, you know what
you could start volunteering is you know the walks might
be too difficult for you to do. So I started
volunteering with Luca Society of Illinois. So I volunteer every year.
This year they're just going to be doing it in

(01:12:50):
a Perville, but I did then. I always do it
the Naperville Walk, in the Chicago walk in which I
did at the registration Jess, Jess, you know, registering people
in for the Loop loopings walk. But just me volunteering,
just giving back knowing that Okay, this is something that

(01:13:11):
I'm battling with every day. Just to give back and
back to the community and donate my time and continue
to fight and advocate for this condition is what you
know what started me?

Speaker 6 (01:13:30):
That is so beautiful.

Speaker 5 (01:13:32):
Tom, Can you please put up the information for the
upcoming walk that's going to be in Illinois, So this
right tell us.

Speaker 3 (01:13:40):
What this is. So this is doctor Leshan Garrillo far
as the Loop in Society of Illinois. Just even if
you're not able to do the walk in August, it's
August nice. Even if you're not able to do the walk,
you could always still donate for the calls. So this

(01:14:01):
is just donating back to the Loop of Society of Illinois.
And so this is the team that I'm on with
doctor Lashan Garulo, So you could just always donate. You know,
if you're not able to do the walk.

Speaker 6 (01:14:16):
Are they able to join a team as well?

Speaker 3 (01:14:19):
If you're not yes, you could always join the team
Russian Stars, which is part of my team with doctor Lashangarulo.
So you could always join the team as well. And
it's with Russian Stars.

Speaker 5 (01:14:38):
Okay, So if you guys are not able to it
would be nice for you guys to show up as well.
So whatever you guys can give or you can come
and present in person to show your support. This is
the information that the walk will be at the location,
the time, in the dates. We will be dropping Niche's

(01:15:03):
information and us Shan Garola information for you guys to
get more information if need be. So thank you so
much for that. What role have support groups and community
connections played in your healing and resilience?

Speaker 3 (01:15:29):
I would say all of them, every support group that
I have that I'm in, you know, because you're meeting
different people, you're networking with different people, You're just listening
to other people's stories and listening to what they're going

(01:15:50):
through that you know, it helps me with my journey.
You know, it helps me to keep fighting. It helps
me to keep going, you know, and you you think
your story might be bad, and then you hear other
people's stories. Then you hear other people that fight and
that keep pushing and you know, like I didne met

(01:16:14):
women with the nor of my light is out THECA condition.
One time was on ventilators and you know, couldn't walk,
couldn't see, couldn't do nothing. And now they're like a
walking testimony, you know, not using any device, not using anything,
And so that helps me with my journey, my to

(01:16:35):
keep fighting and keep going and continue to help build
my faith up with just seeing other just being around
other support groups, that's like, you know, healing to me anyway,
far as just being able to tell your story and
heal and hear other people's stories as well.

Speaker 5 (01:17:00):
Is that is true And it's so beautiful to have
you in. I don't even want to call it a
situation because I don't feel like it's a situation, you
know what I mean, Like, I know it's unfortunate. You know,
you were in your twenties and you was living in
such a beautiful life and now this then you're not

(01:17:22):
able to walk, but you still can cook, you still
can talk, you still can work. You look absolutely beautiful,
You're very stylish. You know you still do all of
these things. And whatever reason why you are in that
you're for the limited time because it's always possible that
you are able to walk again in the future.

Speaker 3 (01:17:44):
Correct, Yes, well, I would say around the house. I
am able to do like eighty feet with the walker.
At one point I was usually guess a rolad a walker.
At one point I wasn't even using the wheelchair, but
like I say, I was breaking through every treatment there

(01:18:05):
was with this condition, as far as the different infusions
that they were putting me on. And so now I'm
going back to therapy in July. But I am able
to do like eighty feet with the walker just around
the house at this time. But I'm keeping my faith

(01:18:26):
that I'll be back on my role later or without anything,
back in the community walking.

Speaker 5 (01:18:33):
Yes, let's just say that. And faith is everything and
if it's meant to happen, it definitely will it definitely will.
I just love your results and your faith that you
have and the confidence that you have. So there's people
that's not in a vuel chair does not do the
confidence that you have and can nor have that mindset.
So that says it speaks a lot. While we are

(01:18:58):
talking about disabled or disability. I do want to bring
up something that is going on in Wisconsin. She played
on the movie called The Wicked, and I don't know
if many people know, but she she's actually in a

(01:19:20):
wheelchair in real life. And so this is gonna be
an event coming up for those that who can attend,
that is it would be a walk in the park.
What's her name that looks so blurring, who MARISSABOUDI. Her

(01:19:45):
name is Marisa Body and she's from the Wicked and
the information is up on the screen you guys, and
the website as well.

Speaker 6 (01:19:51):
So many people do not know.

Speaker 5 (01:19:54):
Like I said, that she is wheelchair bound, okay, and
that's just absolutely beautiful too, because some people that's in
a wheelchair, I feel like their life is over, you know,
they can't accomplish their dreams. They can't do this, they
can't do that. And she is somebody that's telling you
that you can do it. You can do anything you

(01:20:14):
put your mind to, anything that you're willing to do.
It may be a little harder, a little longer, but
if you, if you excuse me, set your mind set
out to do something you it can definitely be done.

Speaker 6 (01:20:26):
And this is an example.

Speaker 5 (01:20:28):
So I will say check her out and check the
event out if you guys are in the city. Thank
you so much for that song. How has shared?

Speaker 6 (01:20:42):
Oh? Before I do that? Did you know anything about
her prior to tom? What did you know about her?
You can you talk? I don't know if you got
a mic or not.

Speaker 5 (01:20:57):
Okay, So you don't want to get online, I producing
ever wants to get on the mic, but that's okay, he.

Speaker 6 (01:21:02):
Say he knows that he knew. Did you know anything
about her? Nisha?

Speaker 3 (01:21:11):
Oh no, I know. This is my first time ever
hearing about her.

Speaker 5 (01:21:17):
Yes, and that one I didn't know. Until I knew,
I was like, what I seen that movie. That's a
lot of action that's going on in that movie. I'm
talking about a lot going on in that movie.

Speaker 6 (01:21:29):
And she is the main character. Oh wow, second main character.

Speaker 5 (01:21:34):
Now he wants to talk because he wants to correct me.
Second main character. Point is she's doing a whole heck
of a lots. Okay. So yes, And if y'all haven't
seen that movie, go check that movie out and you
see exactly what it is that I'm talking about. It's

(01:21:57):
a part two coming out. So listen, y'all are we are?
We are all powerful? Wheelchair not wheelchair?

Speaker 6 (01:22:05):
What an illness is?

Speaker 3 (01:22:06):
Not what it is?

Speaker 6 (01:22:07):
You want to know why?

Speaker 5 (01:22:08):
Because even people that do not have an illning, something
is always going on with somebody, whether it's mentally, physically, emotionally, financially,
it's all a struggle.

Speaker 6 (01:22:18):
It's all a struggle. So and we all got pushed
through in our own way.

Speaker 5 (01:22:29):
How has shared your story publicly helped others and has
it helped you in return?

Speaker 3 (01:22:39):
Yes, so helping me in return. You just don't know
how I go through anxiety Like far as when I
first got in this wheelchair, Like just being in a
chair and being our in public alone, Mike Baddy would

(01:23:04):
hit before I even walked out the door, Like I'd
be like, oh my god, everybody's looking. Everybody gonna see me?
Hope I don't see nobody, I know, Like the anxiety
would hit. And but as I got more comfortable just
being out and and I guess also people would come

(01:23:24):
up to me and just ask me like how did
you get in a chair? Like I guess I wasn't
ready for the questions either, because that dad worked on
the anxiety. So I'm like, oh lord, here we go.
I'm about to get questioned. But while I'm in this chair.
And that's why I say, me and my friend always
cracked the joke. As I start off like well in

(01:23:45):
two thousand and six, you know, it's like I'm telling
this whole story all over again, so that anxiety would hit.
But like I say it, I started getting more comfortable
and with people even asking me and just knowing that okay,

(01:24:08):
I might be in this situation, but I might be
helping others as well. They might have anxiety too, you
know what I'm saying. But just so they could see
me like I, like I said, I still go to church,
I still tear my support groups, I still get out
in the community, I still volunteer. So me just doing

(01:24:28):
what I'm doing, I feel like could help others and
they probably be feel you know, fearful, but it probably
helped them as well. Like oh, you know, she have anxiety.
She you know, was fearful ones you know, but maybe
I could do it, you know, maybe it could I
could overcome my fear and you know, do the same

(01:24:49):
thing she's doing. So I try to over you. Even
though I might be feeling a certain way, I try
to look past that and you know, just keep going
so I can be so I can't help others. You know,
they could look at me, see you now I'm doing it,
and they could feel more comfortable with, you know, overcoming

(01:25:10):
their fears for sure.

Speaker 5 (01:25:13):
And just to go back to what you said when
you was like you wasn't ready for all the questions
that the strangers people will ask you. That's out in
the community and you stated that you hope you didn't
see nobody that you knew. So would you say that's
more a reflection on how you see yourself as to

(01:25:34):
why you are embarrassed or planning thoughts in your head
which you think that they are thinking about you.

Speaker 3 (01:25:43):
Wait, could you repeat the question, I'm sorry, Okay.

Speaker 6 (01:25:47):
And a shorter version.

Speaker 5 (01:25:49):
Would you say that's how you view yourself versus how
they really view you in public, because that's how you
see yourself.

Speaker 6 (01:25:58):
When you said that, you know you would be.

Speaker 3 (01:25:59):
In very Is that yeah, yes, yes, that's you're right.
I definitely review myself that way. And it was definitely
it was my own insecurities. I would say, my own anxiety,
my own insecurities, me feeling like that. And then when

(01:26:22):
I would get out there, even though it was going
through my mind like I don't want to go through
the questions, I don't want to go through this, I
don't want to go through that, it was like people
still made me feel comfortable and still, you know, it
was like they they made me feel comfortable even though
I was feeling a certain type of way with them myself.

(01:26:46):
People will still make me feel comfortable even when I,
you know, went out in the community.

Speaker 5 (01:26:53):
Thank you for that, because somebody's gonna look at this
and they're gonna say, like, I'm playing on my own
and so a lot of people play on their own
mental and think that that is what other people are
thinking on how they are.

Speaker 6 (01:27:05):
Being viewed or what is going on in the real world.

Speaker 5 (01:27:09):
You gotta get out your heads sometimes because those are
your own throats, and people don't understand they thinking that
way because that's how they view themselves. And I'm so
thankful that you admitted that, because that's even going to
take you a step farther to be like, no, I
don't view myself like that, And eventually, while doing the work,

(01:27:32):
you're not going to even think like that. Nowhere, you're
gonna be able to come back on here and be like, listen,
I don't even think like that.

Speaker 2 (01:27:38):
No.

Speaker 6 (01:27:38):
Where I get my chair and we be out.

Speaker 5 (01:27:42):
Were here here and there, and my gootty probably just
be a little bit, but it was not to where
it you know it was. Again, Yes, this message is
for anybody because so many people are in their own heads.
You gotta get out your heads sometimes. You gotta be
able to sit where it's quiet and sit in it.

(01:28:06):
But also understand like that's just me overthinking.

Speaker 3 (01:28:13):
Exactly, yes, because I overthink a lot.

Speaker 5 (01:28:19):
Sometimes sometimes it's not at all, it's a whole situation, that's.

Speaker 3 (01:28:26):
A whole way not going on. I had a whole
scenario all man.

Speaker 6 (01:28:35):
That is fuddy, Oh my god.

Speaker 5 (01:28:39):
Okay, So now we're going to move on to awareness
and misconceptions. Right, what do you wish more people understood
about loop is and me?

Speaker 2 (01:28:49):
Mo?

Speaker 3 (01:28:54):
I would say just researching, just knowing that you know,
you know, people might look at it like, oh, she's sick,
or they person sick, don't get by me, or you know,
people have their own perception of how they look at

(01:29:16):
different conditions. So I just want people to just research yourself.
You know, you could see that it's an automual condition,
it's not contagious, it's you know, just a disease that
you know someone might have, and just knowing, just research

(01:29:37):
on your own and just looking into it just to see,
you know, what these conditions might be about or what
you know, just looking out but you might have different
signs or you know, you might be feeling a certain way,
your body might be feeling a certain way, and just
being able to just advocate for yourself and research for

(01:30:01):
yourself about you know, different conditions and these illnesses.

Speaker 5 (01:30:07):
I would have to agree with you because it's different
from me telling you what's going on me versus you
reading it.

Speaker 6 (01:30:13):
You know what I mean.

Speaker 5 (01:30:14):
I feel like people get a better understanding once they
read certain language versus somebody just telling them.

Speaker 2 (01:30:22):
You know.

Speaker 5 (01:30:23):
I feel like because for me, I understand, like I
can sympathize with you, but once I read it, I'm like,
oh wow, okay, I have a better understanding of it.
So you are absolutely righty to do the work yourself.
Are there any misconceptions or myths about autoimmune diseases that
you often find yourself correcting?

Speaker 3 (01:30:48):
M Yeah, people have different myths about it. Some people
might think, you know, is it contagious? You know, that'd
be a number one thing, is right. It's sad to say,

(01:31:15):
but yes, like what.

Speaker 6 (01:31:23):
It said, I quote, how did you contract it? I said,
what are you talking about?

Speaker 3 (01:31:31):
That's what I mean. Like, you know, people come up
with all type like I'll be coming up with my
head with decent all people. They come up in their
head with all different types of myths. So yes, I
would say the number one thing is like you say,
how did you contract it? Is it contagious? I can't

(01:31:56):
really think of any others right now, but that's the
number one thing that's definitely a myth.

Speaker 6 (01:32:03):
That you guys do your homework.

Speaker 5 (01:32:06):
You cannot catch contract these invisible autoimmune diseases.

Speaker 6 (01:32:19):
Oh my goodness.

Speaker 5 (01:32:21):
How can friends, family, and even strangers better support someone
with an invisible illness.

Speaker 3 (01:32:31):
Not talk down to them? Some people might think because
it's not visible, that they might think I ain't not
wrong with you, or oh she's just faking, or you know.
I would say, be be more compassionate to others, be

(01:32:52):
more compassionate. That's why I say, do your research so
you can see that everything is not visible. You know
the person could be going through something eternally, So do
your research yourself so you could see what all the
symptoms could be with autoimmune conditions, or what all a

(01:33:14):
person can go through with auto mune conditions. So that's
why I say, just be more compassionate. I would say,
be more compassionate with others that's going you know, going
through or have.

Speaker 6 (01:33:27):
It for sure?

Speaker 5 (01:33:29):
I will totally agree with you being more compassionate, more understanding,
being having an open mind, mindset, mindset, having an open
mind mindset, and if you do not understand, if you
care enough, go research it yourself. That's the best thing
that you can ever do is go research it yourself

(01:33:50):
so you can have something to talk about.

Speaker 3 (01:33:53):
Exactly.

Speaker 6 (01:33:55):
The questions.

Speaker 5 (01:33:58):
Yes lead us over to hope, resilience and moving forward.
You've shown such strength in the face of multiple dinosis.
What does resilience mean to you?

Speaker 3 (01:34:16):
That means having faith, prayer, strength, not feeling down, not
like I said, having a pity party for yourself, the

(01:34:40):
being around other positive people, your faith, your support system.
Like I could just go on and on far as
with that, Like it's being positive, staying positive.

Speaker 6 (01:34:57):
Sure, being positive definitely exudes in your actions and behaviors
for sure.

Speaker 3 (01:35:05):
Yeah, not having negative people around like that, because that
could affect you as well.

Speaker 5 (01:35:13):
Almost definitely. So you got to no one, somebody time
has expired and it's okay, let them go. How do
you stay hopeful even when your body doesn't cooperate?

Speaker 3 (01:35:33):
Now that because that brings me back to having that
anxiety dealing with the newer mydas optica, Because like I say,
I could I pay attention to my body like I
had to learn this new body so it might be
days where my leg and went nom or my arm

(01:36:01):
is numb, or I feel like I'm having headaches on
the right side where you know, I went blind at
It's so just being hopeful, like, okay, let me pray,
nothing is happening. I'm gonna get through it. Okay, don't worry,
you know. So it's my body sends out different triggers

(01:36:24):
every day, so I just got to stay hopeful that
nothing else is happening, nothing else is about to attack
me again, nothing else. So just staying in prayer and
paying attention to my body, knowing okay, it's just like
a twenty four hour thing and then need to go

(01:36:46):
away because there's been times where I felt something and
I immediately go to the emergency room like okay, my
leg numb, what's happening, what's going on? What's So it's
just really paying attention to your body, just knowing your body,
and that's the number one thing, Like you have to

(01:37:07):
learn your body. You got to know the new body
that you have now, and that that's what helps me
get through it. That's that's what really helps me get
through it. Just paying assisions to different signs for.

Speaker 6 (01:37:21):
Sure, nobody knows your body better than you.

Speaker 5 (01:37:25):
Your body's going to talk to you, and everybody's gonna
let you know what it is missing, what is need
when something is wrong. So absolutely you do have to
pay attention to your body. You want to take care
of that.

Speaker 3 (01:37:37):
You will to get one.

Speaker 6 (01:37:38):
We only get one.

Speaker 5 (01:37:42):
What message would you give to someone who was just
dinosed with an automium condition and feels overwhelmed or alone.

Speaker 3 (01:37:56):
I'm gonna go back to.

Speaker 7 (01:37:58):
God.

Speaker 1 (01:37:59):
God.

Speaker 3 (01:38:01):
If you don't have a church home, try to get
in the church home. Try to get under a good leadership,
staying in prayer, advocating for yourself, getting us good, getting
into a good support system. Like I say, even if

(01:38:22):
you just got diagnosed with LOOPIS, try to find a
LOOPIS support team so you can be around other women
or other men that's been diagnosed with the same conditions,
so you could see you're not alone and so you
could you know, just know how to deal with it

(01:38:43):
and just being around more positive people. Let the negativity,
you know, because you already just been diagnosed with something
you might not know about. Don't have a clue about
you going through these different symptoms, so you don't need
the extra stress and an extra negativity in your life.
So that's why I say, just get yourself around more

(01:39:05):
positive people, advocate for yourself, and put God first. That
would be my recommendation to somebody.

Speaker 6 (01:39:15):
I love it.

Speaker 5 (01:39:15):
I absolutely love it and laugh but not least. If
there's one thing you hope listeners take away from your
story today, what would it be?

Speaker 3 (01:39:29):
Just knowing that you are not alone, knowing that you
are not the only one that might be going through
whatever you're going through. It is others, you know, out there.
It could be worse. I will just you know, keep
your faith, stay strong, stay around positive people, keep the

(01:39:54):
negativity out, you know. Like I say, learn the new you,
learn the new you, and learn how to you know,
deal with the new you. And it's and I learned
today even just being on this show, Like I feel
like my anxiety has even decreased, just getting letting others

(01:40:20):
know about me and letting others know what I've been
you know, what I've been going through. So yeah, just
be around positive people and keep.

Speaker 6 (01:40:29):
Your faith in God and trust yourself.

Speaker 5 (01:40:33):
We had a conversation yesterday and it was all of
these questions and I'm like, just trust yourself. So trusting yourself.
Allow you to say, like, there's no anxiety right now,
it has decreased. Is I was overthinking? I was in
my head and this I liked it. I oh, this

(01:40:55):
is our first podcast, you guys, So she's gonna be.

Speaker 6 (01:40:58):
Doing more trust.

Speaker 5 (01:41:05):
Oh goodness, out boy, Yes, yes, yes, yes, I absolutely
love this story. Before we end off today, please tell
them where because she she she is an esthetian. An
esthetician okay, a license esthetician. Okay, before all of this
had happened, she was actually doing everything. But I told her,

(01:41:29):
maybe you can go in a different direction as far
as like teaching classes in the in the classroom, like
in a college or something.

Speaker 6 (01:41:36):
Although so she does still do lashes to this day.

Speaker 5 (01:41:40):
Make up what else you do and let them know
where they can find you at, what you got up
and coming and.

Speaker 6 (01:41:48):
Where they can follow you at.

Speaker 3 (01:41:50):
Okay, so yeah, I'm currently still doing uh cluster lashes.
I'm dibbling, dabbling with the extensions, so you know, just
get me a minute with that. But but the colosse
of lashes. I'm on Facebook. Tuinisha naturally you lashes Hall

(01:42:10):
my last name, so it's Tuinisha Naturally you lashes Hall,
it's my Facebook name.

Speaker 5 (01:42:19):
Okay, anything you got up and coming besides the walk,
we talked about the walk and.

Speaker 3 (01:42:29):
Just right now, just yeah, just right now, the Lucas
Walk August ninth, and it's gonna be in Aperville. The
Chicago Walk is not gonna happen really down usually down
by Lencoln Park. But that's everything. Is just gonna be
one time this year in Naperville, August ninth. So that's
the only thing I have up and coming so far.

Speaker 5 (01:42:54):
Okay, we're gonna end in a few seconds, but when
I end, you stay on. It was such a pleasure
of having you. I greatly appreciate your story. Your story
is so inspiring and and I've been doing this for
a while and I'm still getting inspired by people's stories.
And of course blessings goes up you. She is my

(01:43:16):
sorority sister as well. So just thank you, thank you
for coming on here, telling you a story. Somebody's going
to view this and you are definitely going to help someone,
you know what I mean.

Speaker 6 (01:43:28):
You look so.

Speaker 5 (01:43:31):
Just you're shining right now and you're in a wheelchair,
and that that says and speaks value. Okay, I don't
feel like you need any more poured into you because
you are doing all of the right things.

Speaker 6 (01:43:43):
It is showing on your face. But if you ever do,
know you know where to go into to reach out to.

Speaker 2 (01:43:50):
You.

Speaker 6 (01:43:50):
Guys already know what it is.

Speaker 5 (01:43:52):
We are here every Wednesday at six thirty on all platforms.
Please comment, share and subscribe. I do respect back until
next time.