June 1, 2018 • 33 mins
Featuring a conversation with Alexis' mom Kanika about dealing with Lupus. (original airdate: 5/30/18)
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
The FCB Radio Network where Real TalkLives Thesis Take two with Alexis Nun on
(00:21):
the FCB Radio Network. Hi,you are listening to Take two with your
host Alexis Nun. And today isan extra special show and an extra special
month because it is Lupas Awareness Month. And today's guest we have my mom,
Kanika Nunn, who and she ishere because it is Lupa's Awareness Month
(00:43):
and she has lupas, and sotoday we are gonna have her on the
show and we're basically going to talka little bit more about what lupas says.
Some advice for people that you know, have lupus that don't really know
what to do with it. Theyjust found out they have lupas that don't
know how to tell their family tostruggle. Is to tell a family to
struggle to this to tell a lovedone and how to deal with it and
(01:03):
how to cope. And so thatis basically what today's segment is going to
be about. And I hope youguys enjoy. Okay, So this is
where we're gonna get started. Hi, Mom, Hi, how are you
today? Doing good? So Idragged her all the way from work just
to do this segment, So bearwith us. Okay, So by starting
(01:25):
off, can you just tell peopleall over the radio what lupus is a
little bit. It's an autoimmune disease. It can affect all of the major
organs in your body. They kindof call it the silent cancer only because
(01:45):
like cancer, cancer loves kind offast, but lupus moves kind of slow.
Lupus can go on for years,but they kind of relate because lupus
can affect all of the major organsin your bodies. It can affect your
(02:07):
nerves, It can cause a lotof swelling, a lot of arthritis issues.
You can end up dealing with differentkinds of rashes. It just depends.
Everyone who has the lupus doesn't havethe same symptoms. Most people who
(02:30):
have lupus, they all have differenttypes of symptoms. Okay, So just
to follow back on what she saida little bit, I'm gonna I did
some research of my own and I'mgonna repeat a little bit of what she
said and also what Google and otherwebsites have said about what lupus is.
(02:51):
So, lupas is is a diseasewhere the immune system becomes overactive. It
is a chronic disease which affects oneor many tissues of the body skin,
joints, muscles, blood vessels,blood cells, brain nerves, etc.
Due to its many variety and oftenvisible symptoms, lupus can be very difficult
(03:12):
to diagnose. How long did ittake for them to diagnose you with lupus?
I was diagnosed around the age ofthirty five? About thirty five?
How was that? Do you remember? You were still in your you were
in your late teens, Metal teams, But the doctors think I had it
(03:38):
since I was about fifteen, AndI think I had it even younger than
that because I've always been a sicklychild. Okay, So you said you
think you had it since you werein your late thirties, and you said
I was in my late teens.I also remember the day when I feel
(04:00):
were we moving to Pittsburgh around thetime I found out right before we moved
to Pittsburgh. And so I,since I'm her daughter, I know how
the transition was and the struggle waswith her having lupus. Can you tell
us a little bit about that move. We were in the midst of moving
to Pittsburgh. I was believing theywere pulling me out of middle school.
They were pulling me out of middleschool. And my dad has family in
(04:21):
Pittsburgh and he really misses his familyin Pittsburgh. So we chose to move
to Pittsburgh for a little bit.It was actually quite struggle just getting down
there, because of one, it'snowhere where we're from. We knew nothing
about Pittsburgh. It's a lot ofhills, a lot of different traffic ways,
a lot of different people, alot of new learning. And so
(04:42):
she had to find a new jobout there and Pittsburgh, and it was
actually kind of difficult for her,I know from my point of view as
a daughter, because she has lupusand she just found out she's moving to
a whole new town. Has toget a new job. She has to
and she works in daycare, andso she was trying to actually get transferred
from daycare that she was in alreadyto when that one of those day carries
(05:03):
down in Pittsburgh, which is Kendicareright, yes, and you still work
with this company? Yes, okay, And so can you tell us a
little bit about, in your opinion, how your transition down to Pittsburgh was
with the lupus well, when whenwe first got there, it was okay.
But I say a month after wegot to Pittsburgh, my health drastically
(05:27):
started to deteriorate. Literally, bythe time I would get off of work,
my legs and feet would be soswollen that I couldn't even put my
shoes on. I would have todrive home barefoot. And I wasn't so
much pain that I literally would haveto crawl up the stairs. I couldn't
even walk up the stairs. Ihad to crawl up the stairs. So
(05:50):
we were there maybe a month ortwo longer, and then my health just
kept deteriorating even or so we decidedto move back to Cleveland so I could
get back with my doctors at theCleveland Clinic, because I already had a
team of doctors there before I left. So the family made a decision for
(06:15):
me to come back home and getwhat the doctor's there. Yeah, I
want to apologize ahead of time forany background noise that you guys here because
of me. I'm trying to domy life with this show segment, So
if you heard anything in the background, sincerely ignore it. Next question with
that with us moving back to Cleveland, no, actually skip that question.
(06:39):
You said, you feel like you'vehad lupas and synom since you were a
teenager. And actually I spoke tomy mother has two sisters. One is
Yolanda none and one is Wanda none. And the next thing I wanted to
say about that, my Auntie Landatold me that exactly, she feels like
my mother's had lupas since she wasa teenager. And they said that she
(07:00):
she you showed signs when you wereyounger of having lupus. Do you can
you tell me a little bit whenyou were younger. What were some of
those symptoms that you feel like youhad when you were younger that you just
didn't know about. And there wasa symptom of lupus U I say,
starting around the age of nine,eight or nine, pretty much almost every
year I would have strapped throats,pneumonia systems week it was very weak.
(07:30):
One year I was so sick mymom had to rush me to the hospital
and they said I had a severecase of pneumonia. But my mother felt
like I had. She thought Imight have had a spinal man aginas.
But I was always sickly. LikeI said, from the time around eight
(07:50):
years old on like it never stopped, Like year after year, I always
had the flu or pneumonia or bronchitis. I always have upper respiratory issues,
sinus infections, infections in my chest, plurisy issues, which is kind of
(08:11):
like an infection in the chest.It's very painful though. But yeah,
I've been sickly forever. But yeah, there were always fines. Okay,
So I looked up online the agesthat affects the most between the like the
different adreans that get affected the mostbetween lupus, and it says between the
(08:33):
ages zero and thirteen years old it'svery rare to find lupas and children,
toddlers and babies, but the agesbetween fourteen and eighteen is rare. But
in young adults nineteen through forty itis very common. In adults forty one
through sixty and sixty years old andup it is very common. Nowadays.
(08:54):
It is more found in females andvery rare found in males. Do you
have any stories that you would liketo tell about? Um? I remember
you go into was it either theLupe's Fashion Show or it was You've been
to two different events, right,Um, I went to the Lupas Fashion
Show and I also went to likea little Lupas summit at the Warrensville.
(09:16):
It's one I want you to talkin particularly about Um you told me that
you were telling your story basically,Yeah, some people had got up on
stage and you know, they weretelling their story, and it just seemed
like when they when the people wereup on stage telling their story, you
know, everything was still moving,people still purchasing products and buying food and
(09:37):
stuff like that. Um, Iwas listening, but it just seemed like
everybody in the room wasn't listening.And then um, I went up on
stage to tell my story, andlike, I'm not a talker, hate
hate speaking, didn't want to goto speech class when I had to go
to speech class, but I wantedto get my story out because I want
(10:00):
to bring more awareness because lupas isa serious disease. But anyway, I
was standing up on stage and Istarted telling my story, and after a
few minutes of me talking, itseemed like you could hear a pin drop
in the room, Like everybody gotquiet. It seemed like everybody in the
room was totally focus on everything thatI was saying. And it made me
(10:22):
feel really good because I felt likeI was getting awareness out because a lot
of people don't. They don't evenknow what lupas is. They've never heard
of it. But it's so manypeople affected by it, and there are
people who die from it every dayand people don't even know that, but
people die from lupas every single day. So I just want to bring awareness
(10:46):
to the disease, okay, Andthat is exactly what we are here doing.
And so the next thing I wantedto talk about is basically, I
know, with your age, howold are you? Now? I know
you don't women nowadays don't ask awhom in their age, so I'm not
even gonna have her tell her age. So I'm gonna just say she's in
her thirties, mid between thirty andforty, and which is still very very
(11:09):
young. And so because of that, stop laughing at me. It's like,
he go, see what I'm tryingto be. And so she's very
young for it with someone with lupas, and like I said, it affects
the very the young adults and youknow, the younger people um nowadays.
And with that being said, howeasy is it for you to get help
(11:33):
with you having lupas? UM?I won't say it's difficult to get help.
Theirs help out there for people whohave lupez um there's actually I just
found out they have a special teamof doctors at the Cleveland Clinic who focus
just on people who have lupas.And I just got with the hospital actually
(11:56):
a couple of weeks ago, andI don't have my first appointment with them
and about another month. That way, all my doctors will be in the
same building, in the same area. When there's an issue with me,
they're all going to talk to eachother. They're gonna make one collaborative decision.
(12:18):
So that's one resource. There's alsothe Lupas Foundation of America. You
can always call them and get information. They'll send you out information. You
can come down there and talk tothem. There's programs where you can get
counseling. I recommend anybody who haslupas and it's just finding out that they
(12:43):
get counseling because lupas canna be veryhard to deal with. Sometimes it can
be a mental thing and you needto be able to know how to deal
with it. Even right before Iwas diagnosed, and I was having so
many medical issues, and right afterI was diagnosed, I was really depressed,
(13:05):
like really depressed, and getting witha counselor or a psychologist. They
can give you the tools that youneed to be able to deal with lupus.
Because lupas is it can be alifelong thing. Okay, so I
wanted to say this too. Withthat being said, lupas is a very
(13:28):
big, hard thing. It isa lot of help out there you can
get. But it was also whatI really was hoping she touched on,
is how hard it is to getsocial security. Basically, yeah. But
and so for the next segment whenI come back, I want to talk
about how hard it was for usto get her on Section eight at not
Section Night on social Security. Andso when we come back, we're going
(13:52):
to talk about more about the strugglesof getting social Security and also there's more
support that you can have and moreadvice on what you can do and how
you can talk to your family aboutit. So stay tuned and we'll be
back with take two. This isDarby or the Kingpinnmorrow. I want you
to check out my new song Unconditionalfeaturing Dan Smith. I'm not admitted.
(14:13):
I know that I'm my horse iscritic. I'm just trying to deal with
it. I take it back becauseit's in complicating it with simple. We
are looking for something mustag no getUnconditional now on iTunes, Amazon, Spotify,
(14:33):
Title and all other major digital outletsfrom FCB Records. So welcome back
(14:54):
with your host Take Huh that's funny. Well, come back to Take two
with your host Alexis Nunne and yourspecial guests Kneka Nunne. So, last
time we were talking about before wewent on to commercial, I was going
to start talking about how hard itwas to get Social Security. Could you
tell us a little bit about thatstory. I applied for Social Security about
(15:22):
I say, five years ago.How many times repeatedly? What's repeatedly?
Just for people to know, becauseman I was part of helping her to
try to get this, Oh atleast four or five times. It's very
hard to get social Security disability forlupus because they want one of your organs
(15:48):
to be in jeopardy. It hasto be like in serious jeopardy before they
really want to give you social Securitydisability. I I do recommend not giving
up, though, um it mighttake I ain't gonna lie. It might
take up eight to ten years beforeyou get approved through Social Security? Are
(16:11):
you still approve? Are you approvedyet? No? Wow? Um,
And I will be refiling again sometimestowards the end of this year. But
UM, I'm just going to keepon trying. Where were different steps that
you have to take to try toget Social Security? You have to go
first, you have to go toSocial Security. Um. You have to
(16:32):
get the paperwork from them to apply. And it's a lot of paperwork.
When I say it's a lot ofpaperwork, it's like stacks of paperwork.
We ain't trying to get you torun away from the paperwork, not trying
to be motivated to go do this. A lot of paperwork. You gotta
stick to it. But you haveto go sleep. Make sure you're see
your doctors regularly because they will help. It will help. Usually they will
(16:53):
send you to their state doctor tobe evaluated. Most of my doctors,
I have nine doctors. I havea few of them. I have a
pain management doctor, a gas strologist, I have a nerve doctor. I
(17:14):
have a heart and lung doctor.I have a rheumatologist, my regular doctor,
my oldbe doctor. I don't knowif I say at the gas strologists,
but I have several doctors, butmost of my doctors even wrote letters
to Social Security Disability saying that theydid not want me working. I want
(17:37):
before you go further with that,since she's talking about letters, I want
to also bring up to the attentionthat when I was in either ninth grade
or tenth grade, while she wasapplied for Social Security, she had doctor's
write letters, she also had mewrite letter, and so either as a
ninth grader or a tenth grader inhigh school, I was writing a letter
(17:59):
and actually I used it for aclass assignment. It was I used it
for a class math assignment. Iwas gonna bring it in today. Maybe
sometime you'll do a follow up orand one of my another radio stations,
I'll be able to read it toyou guys, just to let you guys
know what I said, because Ihaven't in my memory case and I use
it for a class assignment. Ihad to found a picture of a mother
(18:21):
and a daughter on it. Andshe had me right, because she had
to go through so many cases andtrials, not even just like regular I'm
filing for lupus like you can filefor food stamps or whatever. It's like
she had to go to court,she had to get lawyers, she had
to do all of that, tendingthe whole nine yards. And so my
letter was read I don't I wasn'tthere because I was too young. She
(18:44):
didn't want me to be like allin that stuff, and she didn't want
to distract me. But I waspart of like I was part of it.
As in writing that letter, Iused it for a class assignment.
I had to actually read it infront of the class. And I wasn't
the only letter she wrote. Shehad me write a letter to Barack Obama
too. She I wrote a letterto Barack Obama. And she wrote a
letter to Barack Obama, and heresponded, you want to talk about that?
(19:08):
Basically, the White House said therereally that they were there was nothing
that they could do about it,that they didn't really interfere with the process
of Social Security disability. But hey, I tried he let's not let's not
dog Barack, because he did henot dog and Barrock. I love Barack.
He said he was gonna try todo whatever he could for her.
(19:30):
It wasn't him talking, you know, it was you know, it was
all other folks. It was forgivenme. This is America. Yeah,
being a representative, I do notown copyright to this music. But with
that being said, Um, shehad to deal with the lupus and writing
(19:51):
all those letters. Did you wantto go anymore on? Like, since
there's other ways that we can help. Since you can't get social security like
right right away, there's other thingsyou could try to do to get help.
Um. Really, as far asfinancially really no. As far as
information things that you should be doing, as far as healthwise, how to
(20:18):
deal with lupas, things like that, you can get plenty of information and
you can always go to support team. Yeah, that's true. There is
a Lupas foundation. My mother knowsmore about than I do because she actually
was able to contact the Lupus Foundation. She's had more contact and communication with
them than I have, because ofcourse she's the one with lupus. And
(20:41):
oh, before I forget m lupusis also it could be what does it
call how do you say? This? Passed down genetically? Yeah, it
could be passed down genetically through families. I am actually not too UNGGO was
found out that I could possibly havesomething that is related to lupus. It's
called rheumatoid authritis. Is like asister step to lupas. Basically, I
(21:03):
have to do more research on it, and so would you like to discuss
a little bit more about how thedisease can be passed down and whatnot.
Do you know any more information onthat? I just know it can be
passed down either genetically or sometimes ifyou've been on medication for years, like
since you were young all the wayin adult into adulthood, that lupas can
(21:26):
be caused that way. Um,but really, are those are the only
ways that I know of? Okay, So, is there any advice that
you have for any younger people thatwere just recently diagnosed with lupus, and
not even just younger people, justanybody that was diagnosed with lupus recently.
(21:49):
My first recommendation is always going tobe a counseling. That's that's the first
thing that you should do when you'rewhen you find when you find out when
you're diagnosed with lupus, that's oneof the best things that you can do
for yourself and everyone around you,is get counseling because it's a very hard
(22:11):
disease to deal with. It playson your emotions only because one minute you
you could be feeling great energy togo on top of the world. An
hour later, you might be feelingterrible, stick on your stomach, headaches,
aching, and then two days lateryou might be feeling good, and
(22:34):
then three days later you might befeeling real bad. And it just it's
like tennis. It goes back andforth, back and forth, back and
forth over hours, days, weeks, months, years. So the first
thing I would recommend is going toget counseling to learn how to you know,
(22:56):
learn coping skills to be able todeal with it. Okay. And
my other question is, since heI don't want people with lupas out there
right now to be listening to myradio station or to be watching this live
and to be freaking out, Ohmy god, I'm stressed now because she's
scaring me. She's worrying me.Never feel that way. I don't ever
(23:17):
want anyone to feel alone like itis hard. And I also want you
to know that I understand the wayit could feel to having to tell people
that you love how it is aboutlupas. So it's say you just found
out you had lupas and you're stillstruggling on how to tell your husband how
to tell your kids, how totell your family? What is some advice
or how would you tell someone?How is it how to do that?
(23:38):
And how hard was it for youto do that? Before I found out
I had lupas, I just alwayswonder what was going on? Why am
I always sick? You know?You know? Is this something that I'm
gonna have to deal with forever?What is it? After I was diagnosed,
(23:59):
part of me was happy because Ifinally knew what it was. Then
the other part of me was totallyterrified because I didn't know a whole lot
of lupa about lupas, but Iknew a little bit about lupas, so
I didn't know that it was anautoimmune disease, and I didn't know that
it could affect the major organs ofyour body. So I was happy and
(24:25):
upset at the same time. Iwas nervous to tell my family, not
because I didn't think that they wouldbe there for me and be supportive,
because in that factor, I'm verylucky. I'm very close to my family.
We've always been close and always verysupportive of each other. But I
(24:48):
was scared to tell my family,But because I knew how worried they would
be and how devastated they might beof hearing the news that I had lupas.
So before I told my family,I went crazy on research. I
(25:11):
got all the information that I could, Everything I could think of, investigating
computers, I went out and gotbooks, anything you could think of,
I did it. And after Ihad got all the information that I needed
and I felt very knowledgeable about it, then I just went to each family
(25:32):
member and I sat down with themand I told them, I have lupas.
This is what it is, thisis what it does, and this
is how we're gonna fight it.And my family has Uh, they've always
been supportive. Since the moment theyfound out that I had lupas, They've
always been supportive. They I feellike they get it something the average person
(25:57):
doesn't get it. Uh. Icould say to the average person, I'm
tired, like I'm I can sayI'm I'll say I'm exhausted. I just
want to go home and get inthe bed. The average and the average
person will think, Oh, she'sjust you know, she's a little tired.
Uh. You know, Oh she'syou know, she ain't that tired.
(26:21):
You know, she just don't wantto you know, come hang out
or whatever. But no, whenwhen a person with LUPE says they are
tired, they are not just tired, they are beyond exhausted at that When
they say they are tired or thatthey're exhausted, they they're they're probably too
tired right in that moment to keepstanding on their feet, or they don't
(26:45):
have the energy to go hang outor run an errand at that point they
really need need to go home andsit down and rest. Um. A
lot of people look at people withLUPE and think nothing's wrong with them.
You know, they're working, they'reacting fine, they're smiling, um.
(27:11):
But a lot of people on theinside they're they're in pain. Um.
There's been days where I wasn't Iwork out at the bed and I was
in serious pain. And I gotup. I made myself get washed up,
I made myself get dressed, Imade myself put on some makeup,
and I made myself roll into mycar and drive to work. Yes,
(27:32):
I had to make myself do that. But on the inside I was crying.
But on the outside I was smilingat everybody. When I got to
work, I was smiling. Everybodythought I was fine. So what actually
before we go. I wanted totouch on two more things before we go
out and run out of time.I wanted to touch on exactly how her
(27:55):
work life is and whatnot with herhaving lupus. And actually I got to
I had the honor of actually workingthe same job as my mom. After
I graduated at high school, Iimmediately went into childcare, which I love
and I'm still trying to do.If you guys need to babies to have,
hit me up. I went andstarted working at Kendecare with her.
(28:15):
She's been part of Kindecare since Iwas how twelve years old? Probably She's
been with kende Care for years.And so when me graduating in high school,
I end up going to Kendocare andriding with her or meeting up with
her at the job because I didn'tlive with her at the moment when I
graduated, so meeting up with her, she would have to be there at
seven thirty. I have to bethere at eight. And it was crazy
(28:38):
watching somebody that goes through so muchillness so much always run into like you
know, always run into the bathroomtrying to either get in sick or just
not feeling well or just needing tosit down, needing some water and whatnot,
really working hard. She had workedwith two year olds. She still
works with two year olds and workingwith all the kids. It's hard to
(29:00):
be a teacher kid. People knowwhat nowadays, how hard it is to
be a teacher. If you asksomebody do you want to be a teacher,
person look at you like they're crazy, and we like, hecks not.
I't want to be a teacher.I can't deal with somebody else's kids.
If I have my own, Ican barely deal with them, and
so people will look at you likeyou're crazy. So you gotta know how
hard it is for a teacher withlupus, how hard it is to be
(29:21):
a teacher with lupus, and notonly working with two year olds, working
without the whole daycare. Because shedoesn't just stay in her like one classroom,
she goes to infants classroom. Shegoes to the kindergarten room like I
worked there, I watched it,I did the same thing. And with
that being said, she actually wantteacher of the Month and Teacher of the
year many times. Her portfolio isone of the biggest portfolios and best portfolios
(29:47):
for a teacher you can have.She's worked in many daycares and she's worked
with many different kids. She isactually one of the most favorite, loved
teachers inside of that daycare. Andwith that being said, it's not impossible
to you know, work with thelupez but it is hard. You can
work, work and live a longlife. You just you have you have
(30:10):
to eat healthy, you have totake care of yourself, take care of
your body, no stress. Youhave to stay out of the sun life
and it's gonna be hard. Iknow how hard it is because it's hard
for me. I don't have lupas, but it's hard for everybody to try
to live a no stressful life.It's very impossible to live a no stressful
life. Just try to lower howmuch stress you approach your life. And
(30:33):
the last thing that I want tosay, because we are about to be
wrapping up, is that I didnot get to hit or I talk about
it, but it was just onething that I did want to talk about
for a little quick second. Isone thing that she did go through with
the lupas that I was one thingthat I did understand the most as a
kid and on to now like Icould, like I tell people I can't
tell you what lupas is. Ifyou walked up to me and ask me
(30:55):
right off the bat, I couldn'ttell you right away. I'd be like,
let me call my mom. ButI can't tell you. One thing
that I've always understood is that withlupus, you cannot go into the cold,
and you cannot go into the heat. The cold will mess up raining
on its disease. Yes, itaffects the fingers, the toes, and
they can affect the bridge of thenose. It's literally like frost bite.
(31:19):
So I can touch a can,a cup of cold water, or a
count of pop and my fingers willliterally go numb. In the wintertime,
I've been driving in my car andit was cold, and my tell them
how you almost killed us for aturkey, killed yourself for a turkey.
We don't got time for that.Oh my gosh, she almost killed us
(31:40):
over at turkey. I remember thatexactly what she's saying. That's a story
for another day. I'm gonna tellthat story on the radio station another day,
because it's important. I went outin the cold to get a turkey
that we could have like just atechicken on Thanksgiving instead of risking her life
at zero degrees, whether in EastCleveland's fire department waiting for a turkey giveaway.
(32:04):
But I am going to wrap itup. Thank you for coming on
the show, Mommy. It wasvery nice and special to have you.
This is also Lupas Awareness Month,So if you have anybody, know anybody
what lupas or you know, justshare something on Facebook, Instagram, just
let people know, Hey, lupasis a thing. Hey, there are
people out there dying nowadays with this. There are people out there every day
(32:27):
being diagnosed with this. There areteams getting this, there are young adults
getting this, and there are morepeople that need to be aware of it.
And so if you could just dome a favor, share, share
the share the show today, orgo outside and go tell a friend,
Hey, do you know what lupasis? If not, go look it
up. Do me that one favor, do my mother that one favor,
due the next person, pass iton and just bring awareness this month.
(32:52):
So thank you for coming on theshow, and thank you guys for listening,
and take too with your host.The FCB Radio Network first class broadcasting worldwide
The FCB Radio Network where Real TalkLives Thesis Take two with Alexis Nun on
(00:21):
the FCB Radio Network. Hi,you are listening to Take two with your
host Alexis Nun. And today isan extra special show and an extra special
month because it is Lupas Awareness Month. And today's guest we have my mom,
Kanika Nunn, who and she ishere because it is Lupa's Awareness Month
(00:43):
and she has lupas, and sotoday we are gonna have her on the
show and we're basically going to talka little bit more about what lupas says.
Some advice for people that you know, have lupus that don't really know
what to do with it. Theyjust found out they have lupas that don't
know how to tell their family tostruggle. Is to tell a family to
struggle to this to tell a lovedone and how to deal with it and
(01:03):
how to cope. And so thatis basically what today's segment is going to
be about. And I hope youguys enjoy. Okay, So this is
where we're gonna get started. Hi, Mom, Hi, how are you
today? Doing good? So Idragged her all the way from work just
to do this segment, So bearwith us. Okay, So by starting
(01:25):
off, can you just tell peopleall over the radio what lupus is a
little bit. It's an autoimmune disease. It can affect all of the major
organs in your body. They kindof call it the silent cancer only because
(01:45):
like cancer, cancer loves kind offast, but lupus moves kind of slow.
Lupus can go on for years,but they kind of relate because lupus
can affect all of the major organsin your bodies. It can affect your
(02:07):
nerves, It can cause a lotof swelling, a lot of arthritis issues.
You can end up dealing with differentkinds of rashes. It just depends.
Everyone who has the lupus doesn't havethe same symptoms. Most people who
(02:30):
have lupus, they all have differenttypes of symptoms. Okay, So just
to follow back on what she saida little bit, I'm gonna I did
some research of my own and I'mgonna repeat a little bit of what she
said and also what Google and otherwebsites have said about what lupus is.
(02:51):
So, lupas is is a diseasewhere the immune system becomes overactive. It
is a chronic disease which affects oneor many tissues of the body skin,
joints, muscles, blood vessels,blood cells, brain nerves, etc.
Due to its many variety and oftenvisible symptoms, lupus can be very difficult
(03:12):
to diagnose. How long did ittake for them to diagnose you with lupus?
I was diagnosed around the age ofthirty five? About thirty five?
How was that? Do you remember? You were still in your you were
in your late teens, Metal teams, But the doctors think I had it
(03:38):
since I was about fifteen, AndI think I had it even younger than
that because I've always been a sicklychild. Okay, So you said you
think you had it since you werein your late thirties, and you said
I was in my late teens.I also remember the day when I feel
(04:00):
were we moving to Pittsburgh around thetime I found out right before we moved
to Pittsburgh. And so I,since I'm her daughter, I know how
the transition was and the struggle waswith her having lupus. Can you tell
us a little bit about that move. We were in the midst of moving
to Pittsburgh. I was believing theywere pulling me out of middle school.
They were pulling me out of middleschool. And my dad has family in
(04:21):
Pittsburgh and he really misses his familyin Pittsburgh. So we chose to move
to Pittsburgh for a little bit.It was actually quite struggle just getting down
there, because of one, it'snowhere where we're from. We knew nothing
about Pittsburgh. It's a lot ofhills, a lot of different traffic ways,
a lot of different people, alot of new learning. And so
(04:42):
she had to find a new jobout there and Pittsburgh, and it was
actually kind of difficult for her,I know from my point of view as
a daughter, because she has lupusand she just found out she's moving to
a whole new town. Has toget a new job. She has to
and she works in daycare, andso she was trying to actually get transferred
from daycare that she was in alreadyto when that one of those day carries
(05:03):
down in Pittsburgh, which is Kendicareright, yes, and you still work
with this company? Yes, okay, And so can you tell us a
little bit about, in your opinion, how your transition down to Pittsburgh was
with the lupus well, when whenwe first got there, it was okay.
But I say a month after wegot to Pittsburgh, my health drastically
(05:27):
started to deteriorate. Literally, bythe time I would get off of work,
my legs and feet would be soswollen that I couldn't even put my
shoes on. I would have todrive home barefoot. And I wasn't so
much pain that I literally would haveto crawl up the stairs. I couldn't
even walk up the stairs. Ihad to crawl up the stairs. So
(05:50):
we were there maybe a month ortwo longer, and then my health just
kept deteriorating even or so we decidedto move back to Cleveland so I could
get back with my doctors at theCleveland Clinic, because I already had a
team of doctors there before I left. So the family made a decision for
(06:15):
me to come back home and getwhat the doctor's there. Yeah, I
want to apologize ahead of time forany background noise that you guys here because
of me. I'm trying to domy life with this show segment, So
if you heard anything in the background, sincerely ignore it. Next question with
that with us moving back to Cleveland, no, actually skip that question.
(06:39):
You said, you feel like you'vehad lupas and synom since you were a
teenager. And actually I spoke tomy mother has two sisters. One is
Yolanda none and one is Wanda none. And the next thing I wanted to
say about that, my Auntie Landatold me that exactly, she feels like
my mother's had lupas since she wasa teenager. And they said that she
(07:00):
she you showed signs when you wereyounger of having lupus. Do you can
you tell me a little bit whenyou were younger. What were some of
those symptoms that you feel like youhad when you were younger that you just
didn't know about. And there wasa symptom of lupus U I say,
starting around the age of nine,eight or nine, pretty much almost every
year I would have strapped throats,pneumonia systems week it was very weak.
(07:30):
One year I was so sick mymom had to rush me to the hospital
and they said I had a severecase of pneumonia. But my mother felt
like I had. She thought Imight have had a spinal man aginas.
But I was always sickly. LikeI said, from the time around eight
(07:50):
years old on like it never stopped, Like year after year, I always
had the flu or pneumonia or bronchitis. I always have upper respiratory issues,
sinus infections, infections in my chest, plurisy issues, which is kind of
(08:11):
like an infection in the chest.It's very painful though. But yeah,
I've been sickly forever. But yeah, there were always fines. Okay,
So I looked up online the agesthat affects the most between the like the
different adreans that get affected the mostbetween lupus, and it says between the
(08:33):
ages zero and thirteen years old it'svery rare to find lupas and children,
toddlers and babies, but the agesbetween fourteen and eighteen is rare. But
in young adults nineteen through forty itis very common. In adults forty one
through sixty and sixty years old andup it is very common. Nowadays.
(08:54):
It is more found in females andvery rare found in males. Do you
have any stories that you would liketo tell about? Um? I remember
you go into was it either theLupe's Fashion Show or it was You've been
to two different events, right,Um, I went to the Lupas Fashion
Show and I also went to likea little Lupas summit at the Warrensville.
(09:16):
It's one I want you to talkin particularly about Um you told me that
you were telling your story basically,Yeah, some people had got up on
stage and you know, they weretelling their story, and it just seemed
like when they when the people wereup on stage telling their story, you
know, everything was still moving,people still purchasing products and buying food and
(09:37):
stuff like that. Um, Iwas listening, but it just seemed like
everybody in the room wasn't listening.And then um, I went up on
stage to tell my story, andlike, I'm not a talker, hate
hate speaking, didn't want to goto speech class when I had to go
to speech class, but I wantedto get my story out because I want
(10:00):
to bring more awareness because lupas isa serious disease. But anyway, I
was standing up on stage and Istarted telling my story, and after a
few minutes of me talking, itseemed like you could hear a pin drop
in the room, Like everybody gotquiet. It seemed like everybody in the
room was totally focus on everything thatI was saying. And it made me
(10:22):
feel really good because I felt likeI was getting awareness out because a lot
of people don't. They don't evenknow what lupas is. They've never heard
of it. But it's so manypeople affected by it, and there are
people who die from it every dayand people don't even know that, but
people die from lupas every single day. So I just want to bring awareness
(10:46):
to the disease, okay, Andthat is exactly what we are here doing.
And so the next thing I wantedto talk about is basically, I
know, with your age, howold are you? Now? I know
you don't women nowadays don't ask awhom in their age, so I'm not
even gonna have her tell her age. So I'm gonna just say she's in
her thirties, mid between thirty andforty, and which is still very very
(11:09):
young. And so because of that, stop laughing at me. It's like,
he go, see what I'm tryingto be. And so she's very
young for it with someone with lupas, and like I said, it affects
the very the young adults and youknow, the younger people um nowadays.
And with that being said, howeasy is it for you to get help
(11:33):
with you having lupas? UM?I won't say it's difficult to get help.
Theirs help out there for people whohave lupez um there's actually I just
found out they have a special teamof doctors at the Cleveland Clinic who focus
just on people who have lupas.And I just got with the hospital actually
(11:56):
a couple of weeks ago, andI don't have my first appointment with them
and about another month. That way, all my doctors will be in the
same building, in the same area. When there's an issue with me,
they're all going to talk to eachother. They're gonna make one collaborative decision.
(12:18):
So that's one resource. There's alsothe Lupas Foundation of America. You
can always call them and get information. They'll send you out information. You
can come down there and talk tothem. There's programs where you can get
counseling. I recommend anybody who haslupas and it's just finding out that they
(12:43):
get counseling because lupas canna be veryhard to deal with. Sometimes it can
be a mental thing and you needto be able to know how to deal
with it. Even right before Iwas diagnosed, and I was having so
many medical issues, and right afterI was diagnosed, I was really depressed,
(13:05):
like really depressed, and getting witha counselor or a psychologist. They
can give you the tools that youneed to be able to deal with lupus.
Because lupas is it can be alifelong thing. Okay, so I
wanted to say this too. Withthat being said, lupas is a very
(13:28):
big, hard thing. It isa lot of help out there you can
get. But it was also whatI really was hoping she touched on,
is how hard it is to getsocial security. Basically, yeah. But
and so for the next segment whenI come back, I want to talk
about how hard it was for usto get her on Section eight at not
Section Night on social Security. Andso when we come back, we're going
(13:52):
to talk about more about the strugglesof getting social Security and also there's more
support that you can have and moreadvice on what you can do and how
you can talk to your family aboutit. So stay tuned and we'll be
back with take two. This isDarby or the Kingpinnmorrow. I want you
to check out my new song Unconditionalfeaturing Dan Smith. I'm not admitted.
(14:13):
I know that I'm my horse iscritic. I'm just trying to deal with
it. I take it back becauseit's in complicating it with simple. We
are looking for something mustag no getUnconditional now on iTunes, Amazon, Spotify,
(14:33):
Title and all other major digital outletsfrom FCB Records. So welcome back
(14:54):
with your host Take Huh that's funny. Well, come back to Take two
with your host Alexis Nunne and yourspecial guests Kneka Nunne. So, last
time we were talking about before wewent on to commercial, I was going
to start talking about how hard itwas to get Social Security. Could you
tell us a little bit about thatstory. I applied for Social Security about
(15:22):
I say, five years ago.How many times repeatedly? What's repeatedly?
Just for people to know, becauseman I was part of helping her to
try to get this, Oh atleast four or five times. It's very
hard to get social Security disability forlupus because they want one of your organs
(15:48):
to be in jeopardy. It hasto be like in serious jeopardy before they
really want to give you social Securitydisability. I I do recommend not giving
up, though, um it mighttake I ain't gonna lie. It might
take up eight to ten years beforeyou get approved through Social Security? Are
(16:11):
you still approve? Are you approvedyet? No? Wow? Um,
And I will be refiling again sometimestowards the end of this year. But
UM, I'm just going to keepon trying. Where were different steps that
you have to take to try toget Social Security? You have to go
first, you have to go toSocial Security. Um. You have to
(16:32):
get the paperwork from them to apply. And it's a lot of paperwork.
When I say it's a lot ofpaperwork, it's like stacks of paperwork.
We ain't trying to get you torun away from the paperwork, not trying
to be motivated to go do this. A lot of paperwork. You gotta
stick to it. But you haveto go sleep. Make sure you're see
your doctors regularly because they will help. It will help. Usually they will
(16:53):
send you to their state doctor tobe evaluated. Most of my doctors,
I have nine doctors. I havea few of them. I have a
pain management doctor, a gas strologist, I have a nerve doctor. I
(17:14):
have a heart and lung doctor.I have a rheumatologist, my regular doctor,
my oldbe doctor. I don't knowif I say at the gas strologists,
but I have several doctors, butmost of my doctors even wrote letters
to Social Security Disability saying that theydid not want me working. I want
(17:37):
before you go further with that,since she's talking about letters, I want
to also bring up to the attentionthat when I was in either ninth grade
or tenth grade, while she wasapplied for Social Security, she had doctor's
write letters, she also had mewrite letter, and so either as a
ninth grader or a tenth grader inhigh school, I was writing a letter
(17:59):
and actually I used it for aclass assignment. It was I used it
for a class math assignment. Iwas gonna bring it in today. Maybe
sometime you'll do a follow up orand one of my another radio stations,
I'll be able to read it toyou guys, just to let you guys
know what I said, because Ihaven't in my memory case and I use
it for a class assignment. Ihad to found a picture of a mother
(18:21):
and a daughter on it. Andshe had me right, because she had
to go through so many cases andtrials, not even just like regular I'm
filing for lupus like you can filefor food stamps or whatever. It's like
she had to go to court,she had to get lawyers, she had
to do all of that, tendingthe whole nine yards. And so my
letter was read I don't I wasn'tthere because I was too young. She
(18:44):
didn't want me to be like allin that stuff, and she didn't want
to distract me. But I waspart of like I was part of it.
As in writing that letter, Iused it for a class assignment.
I had to actually read it infront of the class. And I wasn't
the only letter she wrote. Shehad me write a letter to Barack Obama
too. She I wrote a letterto Barack Obama. And she wrote a
letter to Barack Obama, and heresponded, you want to talk about that?
(19:08):
Basically, the White House said therereally that they were there was nothing
that they could do about it,that they didn't really interfere with the process
of Social Security disability. But hey, I tried he let's not let's not
dog Barack, because he did henot dog and Barrock. I love Barack.
He said he was gonna try todo whatever he could for her.
(19:30):
It wasn't him talking, you know, it was you know, it was
all other folks. It was forgivenme. This is America. Yeah,
being a representative, I do notown copyright to this music. But with
that being said, Um, shehad to deal with the lupus and writing
(19:51):
all those letters. Did you wantto go anymore on? Like, since
there's other ways that we can help. Since you can't get social security like
right right away, there's other thingsyou could try to do to get help.
Um. Really, as far asfinancially really no. As far as
information things that you should be doing, as far as healthwise, how to
(20:18):
deal with lupas, things like that, you can get plenty of information and
you can always go to support team. Yeah, that's true. There is
a Lupas foundation. My mother knowsmore about than I do because she actually
was able to contact the Lupus Foundation. She's had more contact and communication with
them than I have, because ofcourse she's the one with lupus. And
(20:41):
oh, before I forget m lupusis also it could be what does it
call how do you say? This? Passed down genetically? Yeah, it
could be passed down genetically through families. I am actually not too UNGGO was
found out that I could possibly havesomething that is related to lupus. It's
called rheumatoid authritis. Is like asister step to lupas. Basically, I
(21:03):
have to do more research on it, and so would you like to discuss
a little bit more about how thedisease can be passed down and whatnot.
Do you know any more information onthat? I just know it can be
passed down either genetically or sometimes ifyou've been on medication for years, like
since you were young all the wayin adult into adulthood, that lupas can
(21:26):
be caused that way. Um,but really, are those are the only
ways that I know of? Okay, So, is there any advice that
you have for any younger people thatwere just recently diagnosed with lupus, and
not even just younger people, justanybody that was diagnosed with lupus recently.
(21:49):
My first recommendation is always going tobe a counseling. That's that's the first
thing that you should do when you'rewhen you find when you find out when
you're diagnosed with lupus, that's oneof the best things that you can do
for yourself and everyone around you,is get counseling because it's a very hard
(22:11):
disease to deal with. It playson your emotions only because one minute you
you could be feeling great energy togo on top of the world. An
hour later, you might be feelingterrible, stick on your stomach, headaches,
aching, and then two days lateryou might be feeling good, and
(22:34):
then three days later you might befeeling real bad. And it just it's
like tennis. It goes back andforth, back and forth, back and
forth over hours, days, weeks, months, years. So the first
thing I would recommend is going toget counseling to learn how to you know,
(22:56):
learn coping skills to be able todeal with it. Okay. And
my other question is, since heI don't want people with lupas out there
right now to be listening to myradio station or to be watching this live
and to be freaking out, Ohmy god, I'm stressed now because she's
scaring me. She's worrying me.Never feel that way. I don't ever
(23:17):
want anyone to feel alone like itis hard. And I also want you
to know that I understand the wayit could feel to having to tell people
that you love how it is aboutlupas. So it's say you just found
out you had lupas and you're stillstruggling on how to tell your husband how
to tell your kids, how totell your family? What is some advice
or how would you tell someone?How is it how to do that?
(23:38):
And how hard was it for youto do that? Before I found out
I had lupas, I just alwayswonder what was going on? Why am
I always sick? You know?You know? Is this something that I'm
gonna have to deal with forever?What is it? After I was diagnosed,
(23:59):
part of me was happy because Ifinally knew what it was. Then
the other part of me was totallyterrified because I didn't know a whole lot
of lupa about lupas, but Iknew a little bit about lupas, so
I didn't know that it was anautoimmune disease, and I didn't know that
it could affect the major organs ofyour body. So I was happy and
(24:25):
upset at the same time. Iwas nervous to tell my family, not
because I didn't think that they wouldbe there for me and be supportive,
because in that factor, I'm verylucky. I'm very close to my family.
We've always been close and always verysupportive of each other. But I
(24:48):
was scared to tell my family,But because I knew how worried they would
be and how devastated they might beof hearing the news that I had lupas.
So before I told my family,I went crazy on research. I
(25:11):
got all the information that I could, Everything I could think of, investigating
computers, I went out and gotbooks, anything you could think of,
I did it. And after Ihad got all the information that I needed
and I felt very knowledgeable about it, then I just went to each family
(25:32):
member and I sat down with themand I told them, I have lupas.
This is what it is, thisis what it does, and this
is how we're gonna fight it.And my family has Uh, they've always
been supportive. Since the moment theyfound out that I had lupas, They've
always been supportive. They I feellike they get it something the average person
(25:57):
doesn't get it. Uh. Icould say to the average person, I'm
tired, like I'm I can sayI'm I'll say I'm exhausted. I just
want to go home and get inthe bed. The average and the average
person will think, Oh, she'sjust you know, she's a little tired.
Uh. You know, Oh she'syou know, she ain't that tired.
(26:21):
You know, she just don't wantto you know, come hang out
or whatever. But no, whenwhen a person with LUPE says they are
tired, they are not just tired, they are beyond exhausted at that When
they say they are tired or thatthey're exhausted, they they're they're probably too
tired right in that moment to keepstanding on their feet, or they don't
(26:45):
have the energy to go hang outor run an errand at that point they
really need need to go home andsit down and rest. Um. A
lot of people look at people withLUPE and think nothing's wrong with them.
You know, they're working, they'reacting fine, they're smiling, um.
(27:11):
But a lot of people on theinside they're they're in pain. Um.
There's been days where I wasn't Iwork out at the bed and I was
in serious pain. And I gotup. I made myself get washed up,
I made myself get dressed, Imade myself put on some makeup,
and I made myself roll into mycar and drive to work. Yes,
(27:32):
I had to make myself do that. But on the inside I was crying.
But on the outside I was smilingat everybody. When I got to
work, I was smiling. Everybodythought I was fine. So what actually
before we go. I wanted totouch on two more things before we go
out and run out of time.I wanted to touch on exactly how her
(27:55):
work life is and whatnot with herhaving lupus. And actually I got to
I had the honor of actually workingthe same job as my mom. After
I graduated at high school, Iimmediately went into childcare, which I love
and I'm still trying to do.If you guys need to babies to have,
hit me up. I went andstarted working at Kendecare with her.
(28:15):
She's been part of Kindecare since Iwas how twelve years old? Probably She's
been with kende Care for years.And so when me graduating in high school,
I end up going to Kendocare andriding with her or meeting up with
her at the job because I didn'tlive with her at the moment when I
graduated, so meeting up with her, she would have to be there at
seven thirty. I have to bethere at eight. And it was crazy
(28:38):
watching somebody that goes through so muchillness so much always run into like you
know, always run into the bathroomtrying to either get in sick or just
not feeling well or just needing tosit down, needing some water and whatnot,
really working hard. She had workedwith two year olds. She still
works with two year olds and workingwith all the kids. It's hard to
(29:00):
be a teacher kid. People knowwhat nowadays, how hard it is to
be a teacher. If you asksomebody do you want to be a teacher,
person look at you like they're crazy, and we like, hecks not.
I't want to be a teacher.I can't deal with somebody else's kids.
If I have my own, Ican barely deal with them, and
so people will look at you likeyou're crazy. So you gotta know how
hard it is for a teacher withlupus, how hard it is to be
(29:21):
a teacher with lupus, and notonly working with two year olds, working
without the whole daycare. Because shedoesn't just stay in her like one classroom,
she goes to infants classroom. Shegoes to the kindergarten room like I
worked there, I watched it,I did the same thing. And with
that being said, she actually wantteacher of the Month and Teacher of the
year many times. Her portfolio isone of the biggest portfolios and best portfolios
(29:47):
for a teacher you can have.She's worked in many daycares and she's worked
with many different kids. She isactually one of the most favorite, loved
teachers inside of that daycare. Andwith that being said, it's not impossible
to you know, work with thelupez but it is hard. You can
work, work and live a longlife. You just you have you have
(30:10):
to eat healthy, you have totake care of yourself, take care of
your body, no stress. Youhave to stay out of the sun life
and it's gonna be hard. Iknow how hard it is because it's hard
for me. I don't have lupas, but it's hard for everybody to try
to live a no stressful life.It's very impossible to live a no stressful
life. Just try to lower howmuch stress you approach your life. And
(30:33):
the last thing that I want tosay, because we are about to be
wrapping up, is that I didnot get to hit or I talk about
it, but it was just onething that I did want to talk about
for a little quick second. Isone thing that she did go through with
the lupas that I was one thingthat I did understand the most as a
kid and on to now like Icould, like I tell people I can't
tell you what lupas is. Ifyou walked up to me and ask me
(30:55):
right off the bat, I couldn'ttell you right away. I'd be like,
let me call my mom. ButI can't tell you. One thing
that I've always understood is that withlupus, you cannot go into the cold,
and you cannot go into the heat. The cold will mess up raining
on its disease. Yes, itaffects the fingers, the toes, and
they can affect the bridge of thenose. It's literally like frost bite.
(31:19):
So I can touch a can,a cup of cold water, or a
count of pop and my fingers willliterally go numb. In the wintertime,
I've been driving in my car andit was cold, and my tell them
how you almost killed us for aturkey, killed yourself for a turkey.
We don't got time for that.Oh my gosh, she almost killed us
(31:40):
over at turkey. I remember thatexactly what she's saying. That's a story
for another day. I'm gonna tellthat story on the radio station another day,
because it's important. I went outin the cold to get a turkey
that we could have like just atechicken on Thanksgiving instead of risking her life
at zero degrees, whether in EastCleveland's fire department waiting for a turkey giveaway.
(32:04):
But I am going to wrap itup. Thank you for coming on
the show, Mommy. It wasvery nice and special to have you.
This is also Lupas Awareness Month,So if you have anybody, know anybody
what lupas or you know, justshare something on Facebook, Instagram, just
let people know, Hey, lupasis a thing. Hey, there are
people out there dying nowadays with this. There are people out there every day
(32:27):
being diagnosed with this. There areteams getting this, there are young adults
getting this, and there are morepeople that need to be aware of it.
And so if you could just dome a favor, share, share
the share the show today, orgo outside and go tell a friend,
Hey, do you know what lupasis? If not, go look it
up. Do me that one favor, do my mother that one favor,
due the next person, pass iton and just bring awareness this month.
(32:52):
So thank you for coming on theshow, and thank you guys for listening,
and take too with your host.The FCB Radio Network first class broadcasting worldwide
Popular Podcasts
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
The Clay Travis and Buck Sexton Show
The Clay Travis and Buck Sexton Show. Clay Travis and Buck Sexton tackle the biggest stories in news, politics and current events with intelligence and humor. From the border crisis, to the madness of cancel culture and far-left missteps, Clay and Buck guide listeners through the latest headlines and hot topics with fun and entertaining conversations and opinions.