September 25, 2025 • 23 mins
Triveda Harris is a motivational speaker, author, and stroke survivor who uses her platform, the Believe in the Journey podcast, to discuss her experiences with Chiari malformation. She shares her journey of resilience while living with this incurable neurological condition.
Key aspects of Triveda Harris's message include:
Become a supporter of this podcast: https://www.spreaker.com/podcast/da-crew-podcast--5763835/support.
Key aspects of Triveda Harris's message include:
- A Chiari warrior. She describes herself as a "Chiari malformation warrior" and actively participates in Chiari Awareness Month activities each September.
- Focus on faith and resilience. Harris often speaks about how her faith in God and a stubborn, determined attitude helped her push through personal struggles. She credits her survival of a stroke and subsequent diagnosis to divine protection.
- Advocacy and awareness. Through her podcast and social media, she discusses her personal experience with Chiari, the symptoms, and the daily challenges of living with the condition. She seeks to raise awareness and support others with invisible illnesses.
- Turning pain into purpose. Harris states that she wears her scars "like jewelry, not for show; but as a reminder of what I've overcome." She uses her experiences to inspire others and helps others write their own stories of healing through her publishing company, Wings of Transformation Publishing.
- The Believe in the Journey podcast: Episodes of her podcast, which feature her story and other inspirational guests, are often promoted on her social media.
- Social media: Follow her on Instagram (@triveda_harris78) and Facebook (Ms.Veda and Believe In The Journey with Triveda Harris) to see her posts and videos. She has been active in discussing her journey there for years.
- Queen Angela Substack: An article titled "Believe in the Journey | Spotlight on Triveda Harris" highlights her journey of transforming resilience into a message of hope.
Become a supporter of this podcast: https://www.spreaker.com/podcast/da-crew-podcast--5763835/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:08):
And as you know, this month is k Information Awareness Month,
and I wanted to share with you my personal journey
of what malformation has been like for me since my
diagnosis actual correct diagnosis sixteen years ago, and what led
(00:33):
up to getting the proper diagnosis. But before we do anything,
we have to go to God in prayer. Dear having me, Father,
thank you for bringing me together. Me and all my
guests who are tuning in. We are sorry for the
delay tonight, but you know, there's always something that's going
to happen whenever you're trying to spread the word or
bring awareness to anything. But we thank you for your guidance,
(00:55):
for your patience, for your understanding for each and everything
that we do. Help the words of my mouth all
upon the ears that need to hear, and help me
to bring awareness to this rare condition that there is
no cure for. It is a condition that is invisible
to the eye, but the patient to deal with it
like myself, we are walking testimonies and blessings of what
(01:19):
you can do when we trust in your healing and
your purchase and Holy name Jesus, we pray Amen. And
as I was saying, this month is Kori Malformation Awareness Month,
and the last show that I did, I talked to
you about what Kuri malformation is, and tonight I wanted
(01:39):
to talk to you about my journey and what it
has been like for me being diagnosed with this condition.
And I'll be honest. When I first found out I
had this condition, I had never heard of it before,
and it was an incidental finding. And what I mean
(02:00):
by that is and y'all, I'm sorry. I got the hiccups.
Speaker 2 (02:03):
I'm not growing.
Speaker 1 (02:04):
I'm still going forever before eight, but I probably spread
in areas that I shouldn't.
Speaker 2 (02:09):
But anyway, I had a.
Speaker 1 (02:13):
Stroke in two thousand and nine, and that was August
the twenty second of two thousand and nine. That's what
led me to finding out that I had KRII my information,
but I still wasn't quite sure. A month after having
my stroke, I was back in the hospital literally on.
Speaker 2 (02:34):
September the twenty.
Speaker 1 (02:39):
The September twenty second of two thousand and nine, and
being in there just literally less than thirty days.
Speaker 2 (02:47):
After having a stroke. I was back in the hospital.
Speaker 1 (02:49):
And the doctors and nurses, they really didn't have an
idea of why I was back because I wasn't presenting
a stroke like symptoms at that time. I didn't have
any other things that would indicate that I was having
another stroke, so they really did not know, but they
knew something was wrong. And I was admitted again to
(03:12):
the hospital for another four days, and I had one
of the nurses who came in and she was telling
me that she had just had one of her friends
and I inserted into the hospital admitted into the hospital
for something similar that I was having, and she told
me what it was. So I asked one of them
(03:34):
if they could, one of the nurses if they could
take me down to the records department so that I
could get my medical records from my previous visit. And
I wasn't going to be able to get the other
records until I was actually discharged from the hospital so
that I could compare all of the notes. And so
(03:56):
she told me about the condition. KIRII my information and
so all I had was my phone. So I started
doing some research about the symptoms that I was experiencing.
And these were symptoms that I had been having as
a little girl growing up, which was the nose bleeds,
the paputations, the numbness, and tingling in my hands and feet,
So this was always something that I had been dealing
(04:18):
with but never been properly diagnosed. The headaches that would
last for days, the shortness of breath, the ringing in
the ears, all of these things not all at one time,
but over time. These were symptoms that would start. The
numbness in the tingling in the hands that started around
age nineteen. The nose bleeds had always been from age
(04:40):
five till still I still deal with the random nose
bleeds and have no indication that that's going to happen.
It's not because I've gotten high or overheated or anything
like that. But I do deal with temperature where I
can't really regulate my body temperature. So being admitted into
(05:06):
the hospital that second time in two thousand and nine,
it was frustrating, but.
Speaker 2 (05:15):
It was something that was necessary.
Speaker 1 (05:16):
So needless to say, I ended up getting my medical
record in that I found the information about Kori, my information,
and it was there. It was there in the original
visit from when I had the stroke, but it wasn't
mentioned to me when I was being released from the hospital.
They only said that I had a stroke. I had
(05:37):
a two millimeter brain aneurysm and that they were more
concerned with those things than anything else, and they didn't
feel that the Kari was significant. So after doing more research,
not being able to use my left side, not being
able to walk, and not being able to hold a
(05:59):
loaf of bread, shoe button shirts in my pants, just
the normal things that do coincide with having a stroke,
that was something that was very, very frustrating to me.
But having to raise three small children, I had to
do my research. So after getting all of my paperwork,
(06:19):
I started doing the research. Finding out that one in
every one thousand person is diagnosed with kri malformation. You
would have to deal with a true Kris specialist. There
are newer surgeons, but there is a difference in the
specialty of what they deal with. So having a surgery
(06:43):
by a newer surgeon who does not specialize in Krii
malformation is not a good idea, but it's not something
that I have considered doing. So fast forward to twenty thirteen.
I had a major flare with my condition. I went
to bed on a Wednesday night. The next morning I
(07:06):
woke up and the whole entire left side from my
face all the way down to my foot I could
not feel, but at the same time it was just
it was twitching, so I couldn't describe it in no
other way. I had a horrible headache, which I was
used to having a headache because that's one of the
(07:26):
major symptoms of KARI. My information and went to the doctor.
They just treated me for my grains and sent me home.
Well over the course of a week, I ended up
losing my ability to speak, and it was frustrating because
(07:47):
as you can see, I talk very well. I do
have some issues every once in a while where I lose.
Speaker 2 (07:55):
My training throat or.
Speaker 1 (07:57):
Words get twisted or whatever, but this is something that
I've had to learn to deal with with having this condition.
So that was frustrating, to say the least, because I
went to bed and I woke up different. And not
only that, it was hard to communicate to the doctors
(08:17):
what I was experiencing, and they were more concerned with
the aneurism rupturing or it causing some problems, and It's like,
that's not what I'm worried about. I'm worried about everything else.
Because I was fine a couple of days ago, and
I have a video that I posted my group in
(08:39):
the Believe in the Journey group about what happened, because
about three days before I had that issue, I had
done a photo shoot and nothing seemed out of the ordinary,
nothing seen as if this was going to be a
flare up or anything like that. But needless to say,
that took me out of work. I could not work.
(09:04):
I was working at an optical place, so I was
an optician while I was actually a contact lens manager,
and I could not perform my job anymore because trying
to measure somebody for their glasses and your hands are shaken.
You don't want to mess up a progressive on a
person who is going to be using those glasses.
Speaker 2 (09:27):
It's just not a good look.
Speaker 1 (09:28):
And so I was unable to do my job, and
that took me out of work for about two years.
And honestly, I've never truly been cleared to go back
to work. But when you have three kids that you
have to take care of and you're a single parent,
you gotta do what you gotta do. And I refuse
(09:50):
to sit around and wait for disability, even though I
had the medical evidence, the two neurologists had signed off
on me to be able to, you know, be approved
of my disability. But you know, when you have people
(10:12):
who don't really understand what this condition is, and just
because I look fine and I was in my thirties
when I was trying to get disability to them, I
could find a job that will allow me to sit
and miss seventy five percent of days. I don't know
what job will allow you to miss seventy five percent
(10:34):
of the days that you're scheduled to work, But needless
to say, that was the information that they gave me,
that I could find a job that would allow me
to miss those days. Jobs are not very forgiven in
situations like that, and I ended up walking away from
a job because I had an employer who was not
(11:01):
very agreeable when it came to my condition and she
didn't understand. And I don't understand why she didn't understand.
But when you work with when you are dealing with
a neurologist, they are specialty doctors and they usually don't
work on Fridays. And the company that I was working for,
we were closed on Fridays to see patients. However, we
(11:25):
still had to come into the office. And when the
temperature starts to change, the season starts to change. My
body is affected by the change in the weather. And
I let them know before I even got hired that
this was going to be something that was going to
be an issue for me, and if it wasn't something
(11:47):
that they were going to be able to deal with,
to let me know upfront and they could go with
another candidate. Well, I got hired. The woman that hired
me was not the lady who was actually over all
of us, but the manager operationals manager. When she came
in her attitude, she was basically on a power trip.
(12:10):
And you know, you deal with some of those people
who are on power trips to where if they don't
have control at home, if they're in an authoritive position,
they tend to abuse their power.
Speaker 2 (12:21):
And that was the situation.
Speaker 1 (12:23):
So when it came down to me having to miss
days and go to these appointments with my neurologists, not
just here in South Carolina, but I had to travel
to North Carolina to get treatment and help due to
kiari because there's not really many local doctors that specialize
(12:44):
in treating kari, whether it's by prescription medications or holistic medications.
Speaker 2 (12:54):
So I had to travel.
Speaker 1 (12:55):
And so she didn't like that so I ended up
she ended up trying to report me to HR. Well,
what happened was the HR director sent paperwork for my
doctors to sign off on, and it was fall it
fell under the American's Disability Act, and with it falling
(13:18):
under that, she had no basis to fire me. So
she used it as if I was late for any
reason that she felt was unacceptable, that.
Speaker 2 (13:32):
That would be the cause.
Speaker 1 (13:34):
Well, we ended up getting into a disagreement about I
got a flat tire, I came in, I called and
let her know that I was going to be there.
I got there even before the office opened because I
was at the tire place early and I got there.
(13:54):
That was a Tuesday, that Friday. That Thursday, my face
was so swollen because I was in so much pain
that I could not be.
Speaker 2 (14:02):
At the front desk.
Speaker 1 (14:04):
And so I told her that, you know, I was
going to utilize one of the days to go home.
Speaker 2 (14:09):
And she didn't like that very much.
Speaker 1 (14:13):
Needless to say, so, she told me that I was
going to be suspended. So my question was, Okay, if
I'm going to be suspended for what reason, for how long?
And is it with pain? Those were questions that she
refused to answer, so me being in the amount of
pain that I was in, my face was swollen because
(14:36):
I was in so much pain. To I just said,
keep the job, I'm going home, and that's what I did.
So working with a condition like this, just because people
can't see, oftentimes what you're going through, they will try
(14:58):
to make you feel bad for actually feeling bad.
Speaker 2 (15:03):
And there's nothing that.
Speaker 1 (15:05):
I can do with Kiari. There's nothing that I can like.
There's no cure for this, so I can't make this
go away. It's not something that is.
Speaker 2 (15:19):
Curable.
Speaker 1 (15:21):
I make the best of every single day that I have,
the random dizzy spells, the numbness and tingling in my hands,
and feed the horrible headaches, the ringing in the ears,
the heart reputations. Earlier today, my son was talking about
(15:43):
he touched my hands and they were ice cold.
Speaker 2 (15:46):
Now, mind you, I was under.
Speaker 1 (15:47):
A fleece blanket on the bed because I was taking
a nap, but my hands were ice cold, so he told.
Speaker 2 (15:54):
Me, don't touch you.
Speaker 1 (15:56):
But I didn't touch him. He touched me first, anyway.
That was just this is not an easy condition to
live with. It's not an easy condition to deal with.
Most people don't understand that if I tell you I'm
not hungry, it has nothing to do with me not
(16:17):
wanting to eat. Sometimes having this condition, I don't have
an appetite. I don't remember to eat. It's even though
I'm like a plus sized woman. You would think that
I'm eating all the time, but I'm not. I don't
have an appetite, and trying to get people to understand
that it affects my appetite, it is hard for people
to understand, and they're like, well, just eat something. Okay, Yeah,
(16:40):
I can eat something, but if I don't like what
it is that I'm eating, I'm going to throw it
up because I will not be able to stomach it.
And so trying to explain that is frustrating because people
don't seem to understand that if I'm telling you I'm
not hungry, I'm really really not hungry. And then there
(17:01):
will be days where I binge eat and it's not
an eating disorder. And what I mean by binge eat
is meaning I will eat breakfast, lunch, and dinner. I
will have the usual three meals, but they're still not
like a full meal for someone else, like I might
(17:23):
eat a whole thing of fruit I might eat a
thing of like some vegetables, like some turnle, greens, cabbage, corn,
just it's something like that, and that's not for everybody.
So my journey with Kiari has not been an easy one.
(17:43):
It has been one that not only myself and my
children have had to learn to deal with and cope
with and learn the signs and symptoms of when I
am having a bad day, my face will be swollen.
Not just my face will be swollen, but you can
(18:04):
tell in my voice, in my body if I'm not
able to move, Like as long as I'm up and
I'm moving around, then it's fine. But the instant I
have sat down for more than thirty minutes, it makes
it very painful to get up and move around. And
(18:26):
sometimes you'll never notice those things. But if I mentally
tell myself that I have these things that I have
to do, I'm able to get them all done. Like
the other day, I cleaned the kitchen and I went through,
cleaned out the refrigerator, put away some laundry, took all
(18:47):
of the trash out, did all of that, and.
Speaker 2 (18:50):
By the end of the night, I was in so
much pain that it hurt. And so.
Speaker 1 (18:58):
It's not easy, but I make it look easy. Yeah,
I'm so sorry, I got to hiccups. So I'm not
gonna be doing much more talking. But my journey with
Kiari has been one of challenging, one of learning to
pay more attention to my body, even though some days
I am still very stubborn and very hard headed.
Speaker 2 (19:22):
But I don't take chances.
Speaker 1 (19:23):
When things stay numb for too long, or I have
these nosebleeds that last for too long, or if I'm
feeling too much pressure, too much pain, I will go
to the hospital and get checked out. One of the
reasons is hard for a black woman to go to
(19:45):
the hospital because most of the time they thinking that
I'm seeking pain medicine and I'm seeking relief for the
pain that I'm in.
Speaker 2 (19:55):
So it's hard to.
Speaker 1 (19:58):
Advocate for myself in a sense of not just being
one to seek medication because I'm not a pill popper
and that's not something that I like to do. I
don't like to take medication because I always look at
the side effects of the medications before I even take them.
So I always try to find natural remedies to help
(20:19):
ease my pain and to help me get through my day.
So going to the hospital or the emergency room is
usually my last resort if I can't find comfort in
the home remedies, so to speak. But kiari is not
(20:41):
an easy condition to deal with. Advocate for yourself. Advocacy
is very, very important when it comes to your health.
Make sure that you are asking all of the necessary questions.
If you are unsure about something, make sure that you're
(21:04):
writing it down so when you do go to your
next check up, our appointment, or whatever, that you have
those questions and if your doctor is not making you
feel comfortable, go and seek a second opinion. There's nothing
wrong with that. People will always try to tell you
that what they think is best are they try to
(21:26):
minimize the symptoms that you're having because they don't see it.
But you live with your body three hundred and sixty
five days out of the year. You know when something
feels all. So make sure that you are telling them
when something doesn't feel right, if this is a new symptom,
because with kiari, there is going to be something different
that you're going to experience.
Speaker 2 (21:47):
And that's one thing that.
Speaker 1 (21:49):
I have noticed over the years, and as I get older,
there are new symptoms also. I'm now going through menopause.
So there's a whole lot of stuff that's going on
right now that I don't always understand. But God has
kept me covered, he has kept me going, He keeps
everything that I need. So even on the days when
(22:11):
I don't quite understand what's going on or what He's
putting me through, he makes sure that I make it
to the next destination that He has for me. So
if I have given you any information, or if you
have any questions, please feel free to reach out to me.
And if I don't know the answers about KI my information,
(22:31):
I will definitely find someone who does. But September is
KI mal Information Awareness month. Color is purple, and I
thank you for taking the time to listen to me
and make sure that you advocate and love someone like
myself who has KARI. And always remember, stay out of
(22:52):
God's business. The only thing that he needs you to
do is to be obedient to what He's called you
to do.
Speaker 2 (22:57):
Good Night, you guys. I'm gonna share that video all
my pain. Good night
Speaker 1 (23:13):
Hmm.
And as you know, this month is k Information Awareness Month,
and I wanted to share with you my personal journey
of what malformation has been like for me since my
diagnosis actual correct diagnosis sixteen years ago, and what led
(00:33):
up to getting the proper diagnosis. But before we do anything,
we have to go to God in prayer. Dear having me, Father,
thank you for bringing me together. Me and all my
guests who are tuning in. We are sorry for the
delay tonight, but you know, there's always something that's going
to happen whenever you're trying to spread the word or
bring awareness to anything. But we thank you for your guidance,
(00:55):
for your patience, for your understanding for each and everything
that we do. Help the words of my mouth all
upon the ears that need to hear, and help me
to bring awareness to this rare condition that there is
no cure for. It is a condition that is invisible
to the eye, but the patient to deal with it
like myself, we are walking testimonies and blessings of what
(01:19):
you can do when we trust in your healing and
your purchase and Holy name Jesus, we pray Amen. And
as I was saying, this month is Kori Malformation Awareness Month,
and the last show that I did, I talked to
you about what Kuri malformation is, and tonight I wanted
(01:39):
to talk to you about my journey and what it
has been like for me being diagnosed with this condition.
And I'll be honest. When I first found out I
had this condition, I had never heard of it before,
and it was an incidental finding. And what I mean
(02:00):
by that is and y'all, I'm sorry. I got the hiccups.
Speaker 2 (02:03):
I'm not growing.
Speaker 1 (02:04):
I'm still going forever before eight, but I probably spread
in areas that I shouldn't.
Speaker 2 (02:09):
But anyway, I had a.
Speaker 1 (02:13):
Stroke in two thousand and nine, and that was August
the twenty second of two thousand and nine. That's what
led me to finding out that I had KRII my information,
but I still wasn't quite sure. A month after having
my stroke, I was back in the hospital literally on.
Speaker 2 (02:34):
September the twenty.
Speaker 1 (02:39):
The September twenty second of two thousand and nine, and
being in there just literally less than thirty days.
Speaker 2 (02:47):
After having a stroke. I was back in the hospital.
Speaker 1 (02:49):
And the doctors and nurses, they really didn't have an
idea of why I was back because I wasn't presenting
a stroke like symptoms at that time. I didn't have
any other things that would indicate that I was having
another stroke, so they really did not know, but they
knew something was wrong. And I was admitted again to
(03:12):
the hospital for another four days, and I had one
of the nurses who came in and she was telling
me that she had just had one of her friends
and I inserted into the hospital admitted into the hospital
for something similar that I was having, and she told
me what it was. So I asked one of them
(03:34):
if they could, one of the nurses if they could
take me down to the records department so that I
could get my medical records from my previous visit. And
I wasn't going to be able to get the other
records until I was actually discharged from the hospital so
that I could compare all of the notes. And so
(03:56):
she told me about the condition. KIRII my information and
so all I had was my phone. So I started
doing some research about the symptoms that I was experiencing.
And these were symptoms that I had been having as
a little girl growing up, which was the nose bleeds,
the paputations, the numbness, and tingling in my hands and feet,
So this was always something that I had been dealing
(04:18):
with but never been properly diagnosed. The headaches that would
last for days, the shortness of breath, the ringing in
the ears, all of these things not all at one time,
but over time. These were symptoms that would start. The
numbness in the tingling in the hands that started around
age nineteen. The nose bleeds had always been from age
(04:40):
five till still I still deal with the random nose
bleeds and have no indication that that's going to happen.
It's not because I've gotten high or overheated or anything
like that. But I do deal with temperature where I
can't really regulate my body temperature. So being admitted into
(05:06):
the hospital that second time in two thousand and nine,
it was frustrating, but.
Speaker 2 (05:15):
It was something that was necessary.
Speaker 1 (05:16):
So needless to say, I ended up getting my medical
record in that I found the information about Kori, my information,
and it was there. It was there in the original
visit from when I had the stroke, but it wasn't
mentioned to me when I was being released from the hospital.
They only said that I had a stroke. I had
(05:37):
a two millimeter brain aneurysm and that they were more
concerned with those things than anything else, and they didn't
feel that the Kari was significant. So after doing more research,
not being able to use my left side, not being
able to walk, and not being able to hold a
(05:59):
loaf of bread, shoe button shirts in my pants, just
the normal things that do coincide with having a stroke,
that was something that was very, very frustrating to me.
But having to raise three small children, I had to
do my research. So after getting all of my paperwork,
(06:19):
I started doing the research. Finding out that one in
every one thousand person is diagnosed with kri malformation. You
would have to deal with a true Kris specialist. There
are newer surgeons, but there is a difference in the
specialty of what they deal with. So having a surgery
(06:43):
by a newer surgeon who does not specialize in Krii
malformation is not a good idea, but it's not something
that I have considered doing. So fast forward to twenty thirteen.
I had a major flare with my condition. I went
to bed on a Wednesday night. The next morning I
(07:06):
woke up and the whole entire left side from my
face all the way down to my foot I could
not feel, but at the same time it was just
it was twitching, so I couldn't describe it in no
other way. I had a horrible headache, which I was
used to having a headache because that's one of the
(07:26):
major symptoms of KARI. My information and went to the doctor.
They just treated me for my grains and sent me home.
Well over the course of a week, I ended up
losing my ability to speak, and it was frustrating because
(07:47):
as you can see, I talk very well. I do
have some issues every once in a while where I lose.
Speaker 2 (07:55):
My training throat or.
Speaker 1 (07:57):
Words get twisted or whatever, but this is something that
I've had to learn to deal with with having this condition.
So that was frustrating, to say the least, because I
went to bed and I woke up different. And not
only that, it was hard to communicate to the doctors
(08:17):
what I was experiencing, and they were more concerned with
the aneurism rupturing or it causing some problems, and It's like,
that's not what I'm worried about. I'm worried about everything else.
Because I was fine a couple of days ago, and
I have a video that I posted my group in
(08:39):
the Believe in the Journey group about what happened, because
about three days before I had that issue, I had
done a photo shoot and nothing seemed out of the ordinary,
nothing seen as if this was going to be a
flare up or anything like that. But needless to say,
that took me out of work. I could not work.
(09:04):
I was working at an optical place, so I was
an optician while I was actually a contact lens manager,
and I could not perform my job anymore because trying
to measure somebody for their glasses and your hands are shaken.
You don't want to mess up a progressive on a
person who is going to be using those glasses.
Speaker 2 (09:27):
It's just not a good look.
Speaker 1 (09:28):
And so I was unable to do my job, and
that took me out of work for about two years.
And honestly, I've never truly been cleared to go back
to work. But when you have three kids that you
have to take care of and you're a single parent,
you gotta do what you gotta do. And I refuse
(09:50):
to sit around and wait for disability, even though I
had the medical evidence, the two neurologists had signed off
on me to be able to, you know, be approved
of my disability. But you know, when you have people
(10:12):
who don't really understand what this condition is, and just
because I look fine and I was in my thirties
when I was trying to get disability to them, I
could find a job that will allow me to sit
and miss seventy five percent of days. I don't know
what job will allow you to miss seventy five percent
(10:34):
of the days that you're scheduled to work, But needless
to say, that was the information that they gave me,
that I could find a job that would allow me
to miss those days. Jobs are not very forgiven in
situations like that, and I ended up walking away from
a job because I had an employer who was not
(11:01):
very agreeable when it came to my condition and she
didn't understand. And I don't understand why she didn't understand.
But when you work with when you are dealing with
a neurologist, they are specialty doctors and they usually don't
work on Fridays. And the company that I was working for,
we were closed on Fridays to see patients. However, we
(11:25):
still had to come into the office. And when the
temperature starts to change, the season starts to change. My
body is affected by the change in the weather. And
I let them know before I even got hired that
this was going to be something that was going to
be an issue for me, and if it wasn't something
(11:47):
that they were going to be able to deal with,
to let me know upfront and they could go with
another candidate. Well, I got hired. The woman that hired
me was not the lady who was actually over all
of us, but the manager operationals manager. When she came
in her attitude, she was basically on a power trip.
(12:10):
And you know, you deal with some of those people
who are on power trips to where if they don't
have control at home, if they're in an authoritive position,
they tend to abuse their power.
Speaker 2 (12:21):
And that was the situation.
Speaker 1 (12:23):
So when it came down to me having to miss
days and go to these appointments with my neurologists, not
just here in South Carolina, but I had to travel
to North Carolina to get treatment and help due to
kiari because there's not really many local doctors that specialize
(12:44):
in treating kari, whether it's by prescription medications or holistic medications.
Speaker 2 (12:54):
So I had to travel.
Speaker 1 (12:55):
And so she didn't like that so I ended up
she ended up trying to report me to HR. Well,
what happened was the HR director sent paperwork for my
doctors to sign off on, and it was fall it
fell under the American's Disability Act, and with it falling
(13:18):
under that, she had no basis to fire me. So
she used it as if I was late for any
reason that she felt was unacceptable, that.
Speaker 2 (13:32):
That would be the cause.
Speaker 1 (13:34):
Well, we ended up getting into a disagreement about I
got a flat tire, I came in, I called and
let her know that I was going to be there.
I got there even before the office opened because I
was at the tire place early and I got there.
(13:54):
That was a Tuesday, that Friday. That Thursday, my face
was so swollen because I was in so much pain
that I could not be.
Speaker 2 (14:02):
At the front desk.
Speaker 1 (14:04):
And so I told her that, you know, I was
going to utilize one of the days to go home.
Speaker 2 (14:09):
And she didn't like that very much.
Speaker 1 (14:13):
Needless to say, so, she told me that I was
going to be suspended. So my question was, Okay, if
I'm going to be suspended for what reason, for how long?
And is it with pain? Those were questions that she
refused to answer, so me being in the amount of
pain that I was in, my face was swollen because
(14:36):
I was in so much pain. To I just said,
keep the job, I'm going home, and that's what I did.
So working with a condition like this, just because people
can't see, oftentimes what you're going through, they will try
(14:58):
to make you feel bad for actually feeling bad.
Speaker 2 (15:03):
And there's nothing that.
Speaker 1 (15:05):
I can do with Kiari. There's nothing that I can like.
There's no cure for this, so I can't make this
go away. It's not something that is.
Speaker 2 (15:19):
Curable.
Speaker 1 (15:21):
I make the best of every single day that I have,
the random dizzy spells, the numbness and tingling in my hands,
and feed the horrible headaches, the ringing in the ears,
the heart reputations. Earlier today, my son was talking about
(15:43):
he touched my hands and they were ice cold.
Speaker 2 (15:46):
Now, mind you, I was under.
Speaker 1 (15:47):
A fleece blanket on the bed because I was taking
a nap, but my hands were ice cold, so he told.
Speaker 2 (15:54):
Me, don't touch you.
Speaker 1 (15:56):
But I didn't touch him. He touched me first, anyway.
That was just this is not an easy condition to
live with. It's not an easy condition to deal with.
Most people don't understand that if I tell you I'm
not hungry, it has nothing to do with me not
(16:17):
wanting to eat. Sometimes having this condition, I don't have
an appetite. I don't remember to eat. It's even though
I'm like a plus sized woman. You would think that
I'm eating all the time, but I'm not. I don't
have an appetite, and trying to get people to understand
that it affects my appetite, it is hard for people
to understand, and they're like, well, just eat something. Okay, Yeah,
(16:40):
I can eat something, but if I don't like what
it is that I'm eating, I'm going to throw it
up because I will not be able to stomach it.
And so trying to explain that is frustrating because people
don't seem to understand that if I'm telling you I'm
not hungry, I'm really really not hungry. And then there
(17:01):
will be days where I binge eat and it's not
an eating disorder. And what I mean by binge eat
is meaning I will eat breakfast, lunch, and dinner. I
will have the usual three meals, but they're still not
like a full meal for someone else, like I might
(17:23):
eat a whole thing of fruit I might eat a
thing of like some vegetables, like some turnle, greens, cabbage, corn,
just it's something like that, and that's not for everybody.
So my journey with Kiari has not been an easy one.
(17:43):
It has been one that not only myself and my
children have had to learn to deal with and cope
with and learn the signs and symptoms of when I
am having a bad day, my face will be swollen.
Not just my face will be swollen, but you can
(18:04):
tell in my voice, in my body if I'm not
able to move, Like as long as I'm up and
I'm moving around, then it's fine. But the instant I
have sat down for more than thirty minutes, it makes
it very painful to get up and move around. And
(18:26):
sometimes you'll never notice those things. But if I mentally
tell myself that I have these things that I have
to do, I'm able to get them all done. Like
the other day, I cleaned the kitchen and I went through,
cleaned out the refrigerator, put away some laundry, took all
(18:47):
of the trash out, did all of that, and.
Speaker 2 (18:50):
By the end of the night, I was in so
much pain that it hurt. And so.
Speaker 1 (18:58):
It's not easy, but I make it look easy. Yeah,
I'm so sorry, I got to hiccups. So I'm not
gonna be doing much more talking. But my journey with
Kiari has been one of challenging, one of learning to
pay more attention to my body, even though some days
I am still very stubborn and very hard headed.
Speaker 2 (19:22):
But I don't take chances.
Speaker 1 (19:23):
When things stay numb for too long, or I have
these nosebleeds that last for too long, or if I'm
feeling too much pressure, too much pain, I will go
to the hospital and get checked out. One of the
reasons is hard for a black woman to go to
(19:45):
the hospital because most of the time they thinking that
I'm seeking pain medicine and I'm seeking relief for the
pain that I'm in.
Speaker 2 (19:55):
So it's hard to.
Speaker 1 (19:58):
Advocate for myself in a sense of not just being
one to seek medication because I'm not a pill popper
and that's not something that I like to do. I
don't like to take medication because I always look at
the side effects of the medications before I even take them.
So I always try to find natural remedies to help
(20:19):
ease my pain and to help me get through my day.
So going to the hospital or the emergency room is
usually my last resort if I can't find comfort in
the home remedies, so to speak. But kiari is not
(20:41):
an easy condition to deal with. Advocate for yourself. Advocacy
is very, very important when it comes to your health.
Make sure that you are asking all of the necessary questions.
If you are unsure about something, make sure that you're
(21:04):
writing it down so when you do go to your
next check up, our appointment, or whatever, that you have
those questions and if your doctor is not making you
feel comfortable, go and seek a second opinion. There's nothing
wrong with that. People will always try to tell you
that what they think is best are they try to
(21:26):
minimize the symptoms that you're having because they don't see it.
But you live with your body three hundred and sixty
five days out of the year. You know when something
feels all. So make sure that you are telling them
when something doesn't feel right, if this is a new symptom,
because with kiari, there is going to be something different
that you're going to experience.
Speaker 2 (21:47):
And that's one thing that.
Speaker 1 (21:49):
I have noticed over the years, and as I get older,
there are new symptoms also. I'm now going through menopause.
So there's a whole lot of stuff that's going on
right now that I don't always understand. But God has
kept me covered, he has kept me going, He keeps
everything that I need. So even on the days when
(22:11):
I don't quite understand what's going on or what He's
putting me through, he makes sure that I make it
to the next destination that He has for me. So
if I have given you any information, or if you
have any questions, please feel free to reach out to me.
And if I don't know the answers about KI my information,
(22:31):
I will definitely find someone who does. But September is
KI mal Information Awareness month. Color is purple, and I
thank you for taking the time to listen to me
and make sure that you advocate and love someone like
myself who has KARI. And always remember, stay out of
(22:52):
God's business. The only thing that he needs you to
do is to be obedient to what He's called you
to do.
Speaker 2 (22:57):
Good Night, you guys. I'm gonna share that video all
my pain. Good night
Speaker 1 (23:13):
Hmm.
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