October 1, 2025 • 48 mins
On this moving and essential episode of Lupus Has No Face, host Savannah Burks welcomes special guest Donnell Owens for a candid conversation about the profound impact of familial lupus. Donnell shares his personal journey of living with a Lupus diagnosis and the unique emotional weight of witnessing the illness affect multiple generations of his own family. He opens up about how a hereditary disease shifts the focus from an individual battle to a shared family history, discussing the difficult questions that arise when a chronic illness feels like an "inheritance." This episode offers raw insight into the complexities of diagnosis, managing symptoms as a family unit, and finding the strength to redefine a legacy that was never asked for. Donnell's story is one of unwavering love, advocacy, and resilience in the face of a generational battle.
Thank you for tuning in to "Lupus Has No Face," a podcast dedicated to sharing real stories and insights on living with Lupus and other invisible illnesses. Join your host, Savannah Burks, as she explores the struggles and triumphs of individuals navigating their health journeys, all while juggling life's many challenges. Don't miss an episode! Subscribe, listen, and share on all major podcast platforms. For more content and updates, follow us on social media and join the conversation.
Thank you for tuning in to "Lupus Has No Face," a podcast dedicated to sharing real stories and insights on living with Lupus and other invisible illnesses. Join your host, Savannah Burks, as she explores the struggles and triumphs of individuals navigating their health journeys, all while juggling life's many challenges. Don't miss an episode! Subscribe, listen, and share on all major podcast platforms. For more content and updates, follow us on social media and join the conversation.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
H m hm m hm. Rsweted lerning her Street us
(00:21):
m m m m m m mm.
Speaker 2 (00:58):
Hmm. Thank you for tuning in to another wonderful episode
(01:23):
of Luca's hasloa Face podcast. I'm your host, Savannah Berts.
We will be discussing invisible inheritance. We do not choose
our legacy. I got my special guest, my friend Donnie,
in the building today. How you doing.
Speaker 1 (01:39):
I'm pretty good. I'm pretty good.
Speaker 2 (01:41):
So what was your day like coming into here? Before
we get start busy, elaborate, just.
Speaker 1 (01:49):
Bringing around the disappointments, Uh, taking care of my own
a couple of ATMs and our own two properties. So
just taking care of everything and trying to get here
on time.
Speaker 2 (02:03):
So okay, I'm I have to add you to the
business series.
Speaker 1 (02:06):
Definitely.
Speaker 2 (02:07):
I didn't get that, mama. Okay, I'm gonna be working
with you. Okay, We're gonna jump right into it. So
can you share a little bit about who you are
outside of loopis.
Speaker 1 (02:22):
I am a father, I am activist. I pretty much
to myself, but I've been told that I was a
people person. I love to help. I I don't I
(02:47):
don't see people just off of first thought you know,
I give everybody the benefit of the doubt until they
you don't choose.
Speaker 2 (02:56):
You know, leader thing.
Speaker 1 (02:59):
Yeah, more of a pissy thing, but anyway.
Speaker 2 (03:03):
That's the leaber thing.
Speaker 1 (03:05):
Okay.
Speaker 2 (03:05):
So for those you just shared for a little bit
that you do personally, right, Okay. So when was the
first time that you heard that you had the invisible illness?
And was it dinosed properly the first time?
Speaker 1 (03:20):
Definitely not. Okay, So this is what happened two thousand
and five. I normally weighed in the range of like
too ten two hundred pounds. I was just like constantly sick.
Felt like I don't know if it was cold floor
(03:42):
or whatever, but I rapidly trp weight. I got down
to like one hundred and sixty five pounds. People thought
I was doing drugs, but it just got so sick
to the point that I was taken to Saint Luke's. Okay,
(04:05):
get to Saint Luke's.
Speaker 2 (04:08):
So wait, let's let's backtrack a little bit. So you
were just very sick, Like what was you experiencing and
how long is this before you actually decided to go
to the hospital.
Speaker 1 (04:17):
It was like, I'm not gonna lie. It was like
two three weeks and I'm just declining, decline and decline
and weakness, chills, felt like I had like pneumonia or
something like that. I don't know, I can put a
finger on it. Right. So I'm losing weight, no appetite, everything, right,
(04:41):
So we finally put me in Saint Luke's Hospital. I'm
in there for eight days. This is why I don't
go to Saint Luke's. No, I'm I'm just being honest.
They're like, well, we I don't know what's going on,
and we're just going to run a whole bunch of tests.
(05:03):
And like one day they'll come back and they go like,
you don't have age, you don't have HIV. And the
next day they come back and they're like you don't
have this, and you don't have that. Then they'll come
back the next day like like they're just running off
of a random checklist. Right. They came in the last
day and said, like with a smile, like we got
(05:24):
good news. You got loopis no clue what loopus is?
No clue that it was a small percent of males,
especially Blackee black black men that you know, had lupis.
I'm in a complete blind So now there's to the
(05:47):
point of how to treat you know my situation, and
it was just months and months of trial and error.
What do you have? I have joint loopers, and my
loopis affected. My kidneys, My loop is affected my kidneys,
(06:10):
and I was on such high doses of pregnant zone
that my kidneys were failing. After a certain period of time,
I was just constantly on this high doses of pregnan
zone to the point of my cartilage and my shoulders
(06:31):
and my hips were to the point that they disappeared.
So now I'm rubbing bone on bone and this time,
now it's time for surgery. So I had to. In
twenty thirteen, I had both of my shoulders replaced. They're
titanium from here to here. And then it came to
(06:53):
my hips. Both of my hips were replaced. It's titanium
from here to hear.
Speaker 2 (06:58):
So if I got the timeline correctly, two thousand and five,
you got yes. And then twenty thirteen your bones were
deteriorated and you have to get all official replaced.
Speaker 1 (07:08):
Twenty thirteen and twenty fourteen, and that period of time,
I was thirty five years old, and now I have
issues with going through the airport.
Speaker 2 (07:21):
It's so amazing how some medicine that can work for you,
because pregnant on is very good, yes, but if you
are on a high doses of it, it deteriorates your bones.
So you have to be very careful with that.
Speaker 1 (07:30):
You have to think about the period of time that
I was.
Speaker 2 (07:34):
You know, so your doses never changed.
Speaker 1 (07:37):
Oh well it for a long period of time. It didn't.
And that after the damage was done and we started complaining,
then they were looking for alternatives. So it decreased for
you know, a short period of time. But fast forward
(08:00):
after excuse me, I received my transplant. Now I'm just
on five milligrams, but it's it's mandatory.
Speaker 2 (08:11):
So and you do not look like what you've been through.
Speaker 1 (08:14):
Oh no, well I I never claimed it. And we'll
just backtrack a little bit. So once we found out
that my kidneys were declining, and uh, I was seeing
a neurologist, you know, on a daily and you know,
he was at this hospital that I don't attend anymore.
(08:37):
I'm not going to say no name the blast, thank you.
But I had ended up having once upon a time
pancreat titus and like you know, stomach messed up or whatever,
and they're doing the ultrasound and everything, and doing the
ultrasound and my kidneys that were failing, they seen a mass.
(09:03):
So they further investigated and come to find out the
masks were tumors. So in my left kidney, I had
a tumor so large that it was about to go outside.
The kidney was that big. On my right side, I
(09:27):
had another mask that was just millimeters. Come to find
out they were two different types of cancer. And because
that my kidneys were failing, we just came out to
a decision of let's just take both kidneys out.
Speaker 2 (09:45):
So both removed.
Speaker 1 (09:46):
Both my kidneys were removed.
Speaker 2 (09:48):
Wow.
Speaker 1 (09:49):
Then I had to do dialysis and I did dialysis
for seven and a half years. And I just want
you to understand, at no point did I pity myself
or no point did I feel sorry about myself. I
felt that, you know, this was probably God's work to
(10:12):
slow me down and you know, just realign me on what,
you know, what life was really about. Because I can
just be honest with you, I wasn't doing the right thing.
You're not taking care of my body, and I'm you know,
ripping and running. God has a way of sitting you down.
Speaker 2 (10:31):
He does, I will send you down and still let
you live.
Speaker 1 (10:34):
Yes, And you know it's it's it's for you to
pay attention to the signs. You know, you don't pity
yourself or anything. You just sit down and you realize
what's going on, and you will have or a greater
look on life. For sure, you would, you would have,
(10:56):
you would appreciate a lot of the little things that
people for granted every day. Now, mind you, seven and
a half years no kidneys, and I don't want to
be funny, but I did not urinate for seven and
a half years.
Speaker 2 (11:15):
Wait a minute, what do you mean that you did
not have any output?
Speaker 1 (11:20):
I did not period. You don't have any kidneys to fill.
It was really weird. And uh, it was very mandatory
for me to do dialysis three days a week. And
you had to because you know, your kidneys filter all
(11:44):
the toxins and everything out of your body, so it
was mandatory. So it's four days, I mean four hours,
three days a week and instill. In those situations, you
have to watch your water intake, you have to change
your diet, you have to do so many different things
to make sure that you know your your body is correct.
(12:06):
So and with that, I used to get up four
o'clock every morning, go to dialysis day in and day out.
A lot of people complained. And this the the crazy
part about it is that I witnessed so many people
(12:27):
passing away. People sit right next to me and you know,
they're they're going through their phase and they're kicking and screaming.
And I never complained, you know, because this person wasn't playing.
Next day I come back, I'm like, we're so and
so they're like, she just passed mm hmm, you know,
(12:48):
and it was just it was eye opening. So I'm
just grateful to still be existing.
Speaker 2 (12:56):
That is so dope. Like I did so many interviews
and met so many different people, and your story has
been the most interesting. I love it, like we can
see her all day and just talk about this particular moment.
But I don't want to do that. I want to
continue to move along. But that is amazing. And I
feel like, you know, when we are in those situations alone,
because even though we have support, we go through all
(13:18):
of that alone and we are in tuned to God.
You know, all those things that you say that we
think about, and we never complained and he set us down,
like that's what it's supposed to be. Like, I feel
like it's supposed to be like you know what I mean,
you sit there and you're doing so well. You're walking,
you're talking, you're doing all of the things because you
decided to listen. Definitely most people it's like, oh, well,
(13:41):
you know, because I was one of those people, like
we had a bad relationship in the beginning and when
I got diagnosed, like how could you do this? But
then you know, as I said, and I thought, and
I was going through those things, and I'm like, why
not me right, because I'm not. I'm not stopping from
anything that I was doing. I still with the college,
I'm still a lot of things. I'm doing a lot
(14:01):
of things. And I feel like he gave me this
for a reason to help other people, because it's like,
what do loopus is supposed to look like? You always
like you don't look like you haven't And it's like, well,
what do I supposed.
Speaker 1 (14:11):
To look like?
Speaker 2 (14:13):
You know what I mean? You gotta want to take
care of yourself, You gotta listen, you gotta be an
advocate for yourself. You got to speak up. A lot
of doctors don't know what they're doing. It is a
chart that go off of and it's some excellent doctors
that do know what they're doing as specialists that's going
to care you and take care of you. So it's
definitely for us to advocate for others while we're living
healthy with Loopus is definitely for us to bring other
(14:34):
people in abundance. So I definitely appreciate that the title
of this episode the Invisible Inheritance. What does that phrase
mean to you personally?
Speaker 1 (14:48):
M Let me think, Well, I'll tell you this when
when I when I accepted what was going on, I
(15:10):
became a more productive person. I was an advocate once
a year, took it upon myself. I had a board
of four or five people and I just threw a
Lupis awareness picnic and we had it at Jackson Park.
And I did this for like five years straight. From
(15:30):
everybody together, I had a speakers to give more information
about loopis enlightened, you know, because a lot of people
really didn't you know, just as well as myself. I
really didn't know anything about lupis and you know, and
I think it just made me seek more information and
(15:57):
give more awareness to the people. So I mean, well,
you know, you're not going to say lupas was a
great thing, but you know it was something that made
me be more knowledgeable and just try to spread the
word more. Yeap.
Speaker 2 (16:12):
So my question to you, once you accepted what you had,
is that when you start educating yourself.
Speaker 1 (16:17):
Definitely.
Speaker 2 (16:17):
Yeah. So that's something that I do teach because I
feel like you got to accept it. Once you accept it,
you know you are willing to learn, yes, because a
lot of people have things and they don't know their treatment,
theself and our doing right. They're just walking around with
what it is that they have, right, and that's beyond
invisible illness. It could be anything, right.
Speaker 1 (16:37):
I agree.
Speaker 2 (16:39):
We're going to move on to family legacy and health.
You share that lupus runs in your family. Can you
talk about how these invisible inheritance has affected your family
across generations?
Speaker 1 (16:50):
Okay, So, I like I was the first person to
be diagnosed with lupus, and then my mother was getting
sick and she's happened like some of the same you know,
familiar issues that I was having, especially like with joining in.
(17:13):
You know, we older people, they'll think, you know, are
we cramping up? Oh? This is nothing but authoritis or nothing.
Speaker 2 (17:18):
No, no, took her to the doctor.
Speaker 1 (17:22):
Come to find out she has lupus.
Speaker 2 (17:25):
What kind does she have?
Speaker 1 (17:27):
It was hers is just joined. Thank god, hers is
just joint. My son, I have a son named Tashami.
The worst loopus of all. This lupus was in his brain,
the back of his brain, to the point that he
was having so many seizures, falling out, hitting his head
(17:50):
on shelves in public and all that. It was so bad,
to the point that they had to introduce he was
have so many seizures back to back. They had to
introduce him, induce him into a coma, you know, to
keep him from you know, having seat and still to today, well,
(18:10):
you know he's great on his upkeep and you know,
taking care, but he's still on the high dosage of loopis.
I mean sorry, that's a high dosage of pregnant zone.
And I have told him that you need to be careful.
You you know, you inform your doctor of that, because
I don't want you to go to the same thing sick,
(18:30):
you know you went through then last but not least.
I have a sister, come to find out she has lupers.
So anytime my children go to the doctor or any relative,
especially in my immediate family, I that I informed them
(18:53):
to let the doctor know you have a family history
of lupus, so they can get ahead of sign and
you know, they can prevent anything or you know, other
than me finding out way later and you.
Speaker 2 (19:08):
Know, the diagnose it so and it's hard to reverse things.
Speaker 1 (19:12):
Yes, definitely.
Speaker 2 (19:13):
So how is everyone doing at this point?
Speaker 1 (19:14):
Everybody is great?
Speaker 2 (19:15):
That's dope.
Speaker 1 (19:16):
I love to hear that, everybody.
Speaker 2 (19:18):
I love to hear that. Okay, how did you first
find out you had loops? And what was your initial reaction?
So you told me that you were really sick, but
you didn't say like how it started, so like did
you just wake up one morning you couldn't get out
of bed, or you know, were you just very fatigue?
Speaker 1 (19:38):
Like no, it was it was all of the above.
But it was slight at first, but it just rapidly
starting getting worse. I'm getting worse and worse. And you know,
at first you think, oh I just am sick or whatever,
or oh I just I'm just not hungry or whatever,
but I mean it rapidly got worse.
Speaker 2 (20:03):
So you literally just woke up and you felt that way.
Speaker 1 (20:05):
Yeah, you know, you started feeling that way gradually, and
then it just rapidly got worse, and they got worse
to the point point that I'm like, okay, this is not,
you know, something that is going to go away. I
need to go figure out what was going on.
Speaker 2 (20:22):
Yes, okay, So we're going to move on to double
battle loops and cancer. In addition to Lupez, you also
focus in things that you have cancer. How did you
cope with fighting on two fronts of the same time.
Speaker 1 (20:40):
Hmm, let me tell you this. I want to tell
you this. So when I let me tell you how
I was informed that I had cancer. I went to
pick up my grandma there because she had an appointment
(21:03):
somewhere or whatever. So we're in the hospital. Well, I'm like, well,
I have an appointment, you know, grandma, you know, just
coming here. She's sitting in the hospital room with me
and I'm sitting there and the doctor comes in and
he's like like real nonchalant and this and that and
(21:25):
you know, yeah, you got cancer and this and that
cancer this, and he just kept talking. I'm like, whoa, whoa,
wait a minute, just stop right there, back up. What
did you just say? And he like, yeah, you know
you I don't know how I felt. I was just frozen.
(21:45):
I was just numb, you know, I mean completely dumb.
This was just straight out the left field, you know.
And I went home like anybody else, I thought the
worst of the worst. And now I'm like just for
like a good three four days, I'm now I'm thinking
(22:09):
like how many days I got to live and all
this is the end or whatever, and uh, I think
the Thank God I have a wife that is a nurse.
We sat down, she went into great depth in detail,
and we did research and all that, and now I'm
(22:32):
already dealing with the failing kidneys and we got this.
And she's like, you know, we went into the whole thing.
So after panicic the panic attack, we just took a
head on like we're going to do this. You know.
We got that, we got to change some things around,
(22:53):
but we're going to do this, you know. And she
didn't have to encourage me that, you know. Uh, we
go on fight as I'm like, yeah, I got things
to do, I got life to live, I got living,
you know, and I want to give a shout out.
I love you so thank you.
Speaker 2 (23:14):
Oh my god. Yeah, nurses, we will We will definitely
do that. We would definitely do that. That's so dope
that you had that support system that helped you through that.
So after the loop is and you found out the cancer,
it was just like, oh my gosh.
Speaker 1 (23:30):
Yeah yeah. I mean, after I was calmed down about
the cancer part, I'm like, let's go.
Speaker 2 (23:40):
Let's go, true fighter, True What lessons have you learned
about strength resilience through these overlapping battles?
Speaker 1 (23:50):
Oh? I am not always have been like the go
to person in my immediate family. So like, I can't
really show no weakness because I got all these people
looking at me and depending on me, and I don't
(24:11):
claim no illness. Like I said before, God has the last,
He has the last, seriously, you know. So I'm just
in the whole thing about it. Like a lot of
people used to look at me, and it seemed that
(24:33):
people will get upset like you don't seem sick, you
don't act sick, you know, And I'm like, no, yeah,
you know that's what That's what people do. They feel
because if you have some type of ailments, ailment, you're
supposed to sit down and hold your head down and no,
(24:57):
I have things.
Speaker 2 (24:57):
To do that's say I'm a purpose you know, seriously No,
But and that's sad because that's how a lot of
doctors are providers. Are they when you come in, they
are monitoring you first when you walk through the door.
So how you walk, how you dress, how you smell,
are you groomed, and all that determines if you say
(25:20):
that you're in pain, if you really are in pain,
because they want pain to look away, which they're trying
to break the stigma down. But that's very sad because
it shouldn't. You shouldn't have to go and look like
what you feel like in order to get the help
that you need.
Speaker 1 (25:34):
Check one of my very, very closest friends. One day,
we're just all figured this out, and I think this
set the tone with everybody because he actually called me
and I'm like hello, and he crying on the phone.
Speaker 2 (25:54):
Yeah the phone, you know about be making me.
Speaker 1 (26:00):
So And you know what after that, he called me,
he apologized, he said, let's go. Yeah, there ain't no
pity party here, no, not at all.
Speaker 2 (26:15):
Who did you crying for?
Speaker 1 (26:18):
So?
Speaker 2 (26:19):
Yeah, that is funny. I love it. It needs to be.
I just love it because how strong you are? You
like I look at myself when I'm looking at you,
and that's how I am. Like, it is what it is,
you know what I'm saying, Like if I just need time,
I will communicate that. Maybe maybe not. It all depends
because we don't like to look weak. But at the
(26:40):
end of the day, it's like what is weak, you
know what I'm saying, Like we we are entitled to
risks and not feel bad. We are entitled to have
our moments and not feel bad, you know what I mean.
And people be wanting explanations all the time. But as
for me, I'm like, if I see her and tell
you everything I'm going through, that's like saying that I
have what I have right owning it. And I don't
(27:02):
like that, and people want that so they can better
understand it. Just like at the same time, you're taking
something from me by making me feel vulnerable, you know
what I mean. Like if I need you, I'm going
to call you for sure, but to be in here like,
oh my god, you know, I'm just so it's like
it's really nothing that you can't understand it.
Speaker 1 (27:19):
And the thing about it is like if you claim it,
you know how mentally draining it is. It is you're
gonna tuck yourself in the corner.
Speaker 2 (27:27):
And no, it's so hard to get out of it.
And once you accepted that was the hardest battle ever, No.
Speaker 1 (27:35):
Saying keep fighting. Biously, you lose time having a pity
party for sure.
Speaker 2 (27:44):
For sure where those moments where you felt like giving up?
And what pulled you through?
Speaker 1 (27:54):
I can't recall the moment. No, Seriously, you know you
get tired sometime. But Noah, I hate to keep repeating myself,
but I got stuff to do. Seriously, No, I'm being
I mean, I'm being so serious. I never lost a beat,
(28:17):
you know, doing this all right? Just imagine if I
just I'm all somber and I'm in the corner. No,
you can use that energy with figuring out, you know,
what's the best way to change your diet? What's the
best way to do this?
Speaker 2 (28:32):
You know? No, I love it, love it.
Speaker 1 (28:37):
Keep your head up and keep it pushing.
Speaker 2 (28:40):
Serious people don't understand who like works are very powerful. Yes,
it all plays in your mind, and your mindset has
to be there for you operate properly anyways, So it
takes a lot to even have that right Wow, Okay.
Emotional and spiritual impact chronic illness often carries any emotional
image to wait, what have been the hardest part for you?
Speaker 1 (29:06):
No, I mean it was just well more so just
thinking about the end, because now I can't tell you
that it was simple, because I had a lot of
major setbacks. I had a lot of you know, Okay,
well now you have cancer, so you got to wait
(29:28):
five years to be cancer free to even get on
the transplant list, you know. And then I ended up
having an infection in my ankle. So first one minute,
I'm on the list. Now I'm off the list now,
you know, until we get this, you know, figured out.
So that was two more years, and it was even
(29:53):
situations that I finally get clear for everything. Got the
call all in the middle of the night. Yeah, come on,
you know what I'm saying down and excuse being, we
have a kidney for you. Got into the room, My
wife happy, I'm happy. We're in the room, getting dreaded
changing everything and were in the bed taking a nap
(30:17):
because we got there like three thirty in the morning
and come wake us up at like four forty five
and hey, kidney, it's not a match, you know, how heartbreaking.
I'm just looking for my wife. She's she's broken up,
and they're like, oh, well you can, y'all can just
(30:37):
sleep here, and he's like, no, we didn't get about
it here, you know what I mean. So it was
just a lot of two steps forward, you know, one
step foward, two steps back, you know what I mean.
So when we finally finally got the call and they
told us this was during the COVID area, Oh wow.
(30:59):
So we got packed up everything, we ready to go.
We're getting to the hospital and right at the door,
they look and tell my wife you can't go up.
They needed security for her, they really needed I'm trying
(31:25):
to her like she oh, she went in. But and
now you have to think about the whole time that
I'm I'm up there, I'm up there by myself and
we can only talk on the phone or video chat
(31:45):
and all that, and that really hurt her so so
bad that she couldn't be by my side through this journey.
And you know, we well we've been you know, through
so much and she couldn't you know, be there for
the end process.
Speaker 2 (32:01):
So it is I can only imagine, Oh my god,
how has your perspective on life, family, or legacy shifted
because of lupis in cancer.
Speaker 1 (32:18):
Don't miss a moment.
Speaker 2 (32:20):
Yeah, for sure, I.
Speaker 1 (32:21):
Don't miss a moment. Love heart, forgive and because life
is very short, for sure, So you know, you gotta
you never know, dumb body knows you know, so chairs
what you have love and love heart and hey let's
(32:41):
keep it going.
Speaker 2 (32:43):
Yeah, I'm with you with that. Where did you draw
strength from faith in family and community?
Speaker 1 (32:50):
My family? My family always been there and that's my rod,
especially the.
Speaker 2 (32:57):
Soldiers, that's my rock.
Speaker 1 (33:02):
Seriously, even when it was time that I didn't want
to get up, we're finna go, you know, put that down.
You can't eat that, you know, you can't eat that. Yeah,
she was always on point. Seriously. It got to the
point that the doctor stopped talking to me and EDG
just asked for her.
Speaker 2 (33:22):
Don't because she probably wants to know exactly what's going on.
What they say.
Speaker 1 (33:27):
My wife's been a nurse for going on twenty five years.
She's been cardiac nurse, long term nurse. Yeah, she wears
a lot of hats and.
Speaker 2 (33:40):
Yeah, that's funny. Did you sneak some things when she
thought you're gonna have now?
Speaker 1 (33:45):
Oh, what would you do? I had to go to
work sometimes.
Speaker 2 (33:54):
Did you ever have a reaction for some stuff that
you had there?
Speaker 1 (33:59):
Truly was that you got to understand when youalysis you
have to have low salty and diet, You're not gonna
stop me from frying chicken man oxtails. And I'm you know,
(34:19):
I'm a flavored type person. When they get to dialysis,
they're like, you got so much water and all this
and they gotta take it off. And they called and
let her know, likeah, he was way over and yeah.
But hey man, so you it's funny.
Speaker 2 (34:40):
We gonna move on to the advocacy and legacy. How
did you see your story as part of changing the
legacy for your future generation and your family?
Speaker 1 (34:51):
Just be aware, you know, with a lot of people
don't do especially men. We have something going on and
you want to ignore it or no, especially when you
get up to my age. Excuse me, you have to
(35:11):
go to the doctor, get checked on. You know, I
have people that are close to me that could have
prevented colon cancer and you know all these different things
and you know, no, man, put your health first anything.
(35:33):
Do check ups. It's it's not unmanly to you know,
go see a physician. You know, it's definitely. It's not
unmanly to go see a physician because we're stubborn, you know.
But if you if if you stop thinking of yourself
(35:54):
and start thinking about the people that you love, the
people you know, I think about my grandkids, is my
you know, my my family, and these are all the
people that depend on me, and they will hurt so
bad even not only if I passed away, but if
I passed away on something that I could have prevented.
(36:16):
So go see the doctor. Yes, always, yes, I love it.
Speaker 2 (36:25):
If you could speak directly to someone newly dinosed facing
a double dinos, what would you want them to hear?
What would you say to them?
Speaker 1 (36:36):
I will tell you to before you panic, be informed. Yes, research, yes,
you know, go go in depth and you know, and
find out what is your situation, what is the what
is the probability or how you know? What could you
(36:59):
do the better yourself to treat your illness? You know,
and just don't go by what the doctor said, because
a lot of people don't understand a lot of these
medical terms. So do your due diligence and explore on
your own.
Speaker 2 (37:16):
Yes, for sure, people always act like people always ask
like you know, what is that, and I always tell
them go reading you come tell me, because it's different
when you're communicating that with someone versus reading it it.
It's different.
Speaker 1 (37:27):
Right, So there's a lot of information out there for sure.
And if you loopus, if you have lupus, you got
to understand. We are called loopus warriors, right, so you
have to fight, understand research, you know, don't don't have
a pity party, stand up strong because this is only temporary.
(37:48):
It can it can be fixed. That's all you have
to do is gain knowledge for yourself about what's going
on with you and your body.
Speaker 2 (37:57):
And when you are intul in your body, your body
tell you when you have too much of anything overly
doing anything like it definitely talks to you.
Speaker 1 (38:04):
Definitely pay attention to the signs.
Speaker 2 (38:07):
Attention to signs. And now I'm telling people to you know,
know your blood type, your blood type, because depending on
what blood type you have, you cannot eat certain things.
Even though they say like everything green is we're supposed
to have it, but if you have a certain type
of blood type, you can't eat that, right, you know,
so you are already inflaming your body. So for sure,
(38:28):
what role does advocacy and storytelling, play and healing and
raising awareness.
Speaker 1 (38:35):
Oh there's a major role. You know. The more that uh,
the more that you inform in the awareness and raise awareness,
you know, the the more so when when especially well
when when I first had it, Like I said, I
was the first one. Nobody in my family, nobody around
(38:57):
me absolutely did not know anything about loopers or what
it was or you know, so a lot of people
who didn't even understand my story and what I was
going on. You know, it was just way over their head,
you know, until I started really getting sick, and then
everybody wanted to you know, tune in and just seek
(39:21):
more information so they can relate to what I was
going through. So awareness is key, seriously, and especially with
a person like me that have this illness going through
my bloodline. Oh, everybody has to know. And that's why
I was holding the gatherings for Looper's Awareness. We're passing
(39:45):
out pamphlets, were talking about it. You know, I just
I just wanted to just spread the word because there
were so many people that didn't have a clue of
what it was.
Speaker 2 (39:56):
And I still don't exactly is wild to me? Why
do you think loop is is not giving the publicity
in needs as far as cancer, I couldn't even.
Speaker 1 (40:09):
Tell you do. And if you look at the statistics
of so many people that has this, you know, and
it's like on the back burner because and I believe
because they when they say a person have loop as
they go, well it's uncurable or whatever, you know what
(40:32):
I mean. But no, it should be put to the forefront,
just like everything else, and we should start researching and
just you know, stop you know, shortstopping the information or
the research on that, you know what I mean. So
I think that we should have the same much awareness
and knowledge and research just as well as all the
(40:54):
other ones. You know.
Speaker 2 (40:56):
So do you or I heard you say you did,
So did you stop doing the picnic that's what you're doing?
Speaker 1 (41:02):
Yes? I stopped doing them. I I I felt that
people were just taking for granted of what I was
doing because everything I was doing was out of pocket,
(41:24):
out of my pocket, and I didn't mind because I
wanted to do it my way. But once you're you're
having these big events like this, a lot of people,
I felieve it took advantage of it and they just
felt like it was just a big you know, a
big park you know what I mean. And I just
(41:46):
didn't like the avenue that it was going.
Speaker 2 (41:49):
So I just pulled out, wasn't your heart hearts to do?
Like is like do you miss it that you wish
that you were.
Speaker 1 (41:55):
Continue And a lot of people asked me, and my
son actually the one has Lupez. He asked me just previously,
like what you think about, you know, having another one?
And I said, if I can answer you right now today,
I would say no, I said, but I would give
(42:16):
it a lot of thought.
Speaker 2 (42:17):
And I say that because I also have a non
profit organization called Loopus has my face it's POBC three
a little bit over five years in the game, and
I can definitely understand what you're talking about, Like it's
very expensive when the grens don't come through or the
masterships and all that stuff is to come through. And
it's been many times, and I'm just like even the
day of I'm like, yeah, but you know what, I
(42:37):
want to do it. But it's like the feedback that
I get, like a lot of warriors are very private
and they won't do it right then and there. But
the feedback that I have gotten with all of the
events that I have thrown the book that I've broke,
Like it's just like you can't, you know. And that's
what actually keeps me going because it's helping them right
(43:00):
in some way. For my fashion is helping them and
share their stories is you know, they look forward to
the things that I'm doing. And so my model is like,
I don't care if it's one person that came and
I spent all of this money, like I help one person, you.
Speaker 1 (43:13):
Know what, I think?
Speaker 2 (43:14):
Me and you should sit down the turn We should, seriously,
we should.
Speaker 1 (43:18):
I know. But the reason why I say that is
because you probably will. You definitely have the largest platform
of the Looper's Warriors, and so like when I was
doing it, I was doing it basically for it was
(43:39):
like a lot of friends and family that just attended,
you know, we tried to inform them and all that.
But if we can reach out to a lot of
people that does have Loopers, oh yeah, I'll do it again.
Speaker 2 (43:53):
We definitely I will do it because I think that'll
be dope.
Speaker 1 (43:57):
I will do it again, and we'll do it really big.
Speaker 2 (44:01):
You speak about language.
Speaker 1 (44:04):
And that you know that right there with yeah.
Speaker 2 (44:08):
Yeah, and then like even after that follow ups you
know what I'm saying it's always good to have a
follow up because people always want to know what's next.
Because I'm gonna say we because it's week, we feel
unseen and unheard and things and that, and so when
we have someone that we can talk to, events and things,
because sometimes people don't have the energy that means you
have and they can't do a lot of the regular
(44:29):
things that we do. So having those type of events
just for our warriors, like, they definitely appreciate that.
Speaker 1 (44:36):
So I think you should agree, you know.
Speaker 2 (44:42):
So we're gonna move into closing what's next for your journey?
Any projects, advocacy work, or personal goals you like to share.
Speaker 1 (44:53):
I'm sorry, but you got my wheels turning down so
we could put something together. I like to hear that.
Speaker 2 (45:03):
I like to hear that.
Speaker 1 (45:04):
Yeah, I think we can definitely put something together.
Speaker 2 (45:06):
Do you at any lupas anything that's so crazy? So
have you heard of anything that I've done?
Speaker 1 (45:14):
No? Do you? Im sorry that I don't mean to
interrupt people. I'm kind of a private person, I am,
so I have no but I'm really really honored to
meet you and I think we can do some big things.
Speaker 2 (45:35):
Thank you. I appreciate that. I appreciate that because having
a meal like it just changes the game because a
lot of meals don't come forward to happen and they
I feel like they take it worship than the women.
So to have someone that looks like you talk like
you like, I think that would be so dope.
Speaker 1 (45:56):
Cool.
Speaker 2 (45:56):
Okay, I don't how can you How can listeners connect
with you? Support your Johnny or anything that you following
or followed along. I know you said that you're private,
but like they're going to see this if they want
to talk to you or anything like that, and it's
okay if it's a no. You know you avo kids.
(46:21):
So I mean advocacy, you know you speaking to people, right, yeah,
and it's all in your time and on on your turn.
He did say he was private, you guys, so if
he does do this, you have to show him grace.
Speaker 1 (46:35):
Well I'm not really on the internet thing like that,
but I do have a TikTok plage. I'm going to
TikTok the lab. So you got tick tack, but you
can reach me at uh Donnie Love seventy four d
(46:57):
O N N I E l O V.
Speaker 2 (47:01):
Tiktag to Ton can you please drop the tags so
they can and just let me know how that turned out.
Speaker 1 (47:08):
I will.
Speaker 2 (47:09):
I would love to see you know who all reaches
out to you because people gravitate towards individuals, you know
what I'm saying. So I appreciate you so much for coming.
I can't wait till you come on again. It's been
such a pleasure. I definitely will thank you guys for
tuning in to another wonderful episode of Lupen's Has No Face.
(47:32):
Now remember if you need any type of counseling, coaches
and accepting anything that you're doing that you feel stuck in,
please do reach out to me. I am also a
life coach as well. And you can also purchase the
book of God Living Well with loop Is on Amazon
or www dot lupasasoface dot com just to get any organizations.
(47:53):
It's not even just for Lucas Warriors, it's for everyone.
We are live, Everyone's down all platforms at six thirty.
If you did Mige the show, please go to Lupas
Tasmofa's podcast and while you're there, like share and subscribe
until next time.
H m hm m hm. Rsweted lerning her Street us
(00:21):
m m m m m m mm.
Speaker 2 (00:58):
Hmm. Thank you for tuning in to another wonderful episode
(01:23):
of Luca's hasloa Face podcast. I'm your host, Savannah Berts.
We will be discussing invisible inheritance. We do not choose
our legacy. I got my special guest, my friend Donnie,
in the building today. How you doing.
Speaker 1 (01:39):
I'm pretty good. I'm pretty good.
Speaker 2 (01:41):
So what was your day like coming into here? Before
we get start busy, elaborate, just.
Speaker 1 (01:49):
Bringing around the disappointments, Uh, taking care of my own
a couple of ATMs and our own two properties. So
just taking care of everything and trying to get here
on time.
Speaker 2 (02:03):
So okay, I'm I have to add you to the
business series.
Speaker 1 (02:06):
Definitely.
Speaker 2 (02:07):
I didn't get that, mama. Okay, I'm gonna be working
with you. Okay, We're gonna jump right into it. So
can you share a little bit about who you are
outside of loopis.
Speaker 1 (02:22):
I am a father, I am activist. I pretty much
to myself, but I've been told that I was a
people person. I love to help. I I don't I
(02:47):
don't see people just off of first thought you know,
I give everybody the benefit of the doubt until they
you don't choose.
Speaker 2 (02:56):
You know, leader thing.
Speaker 1 (02:59):
Yeah, more of a pissy thing, but anyway.
Speaker 2 (03:03):
That's the leaber thing.
Speaker 1 (03:05):
Okay.
Speaker 2 (03:05):
So for those you just shared for a little bit
that you do personally, right, Okay. So when was the
first time that you heard that you had the invisible illness?
And was it dinosed properly the first time?
Speaker 1 (03:20):
Definitely not. Okay, So this is what happened two thousand
and five. I normally weighed in the range of like
too ten two hundred pounds. I was just like constantly sick.
Felt like I don't know if it was cold floor
(03:42):
or whatever, but I rapidly trp weight. I got down
to like one hundred and sixty five pounds. People thought
I was doing drugs, but it just got so sick
to the point that I was taken to Saint Luke's. Okay,
(04:05):
get to Saint Luke's.
Speaker 2 (04:08):
So wait, let's let's backtrack a little bit. So you
were just very sick, Like what was you experiencing and
how long is this before you actually decided to go
to the hospital.
Speaker 1 (04:17):
It was like, I'm not gonna lie. It was like
two three weeks and I'm just declining, decline and decline
and weakness, chills, felt like I had like pneumonia or
something like that. I don't know, I can put a
finger on it. Right. So I'm losing weight, no appetite, everything, right,
(04:41):
So we finally put me in Saint Luke's Hospital. I'm
in there for eight days. This is why I don't
go to Saint Luke's. No, I'm I'm just being honest.
They're like, well, we I don't know what's going on,
and we're just going to run a whole bunch of tests.
(05:03):
And like one day they'll come back and they go like,
you don't have age, you don't have HIV. And the
next day they come back and they're like you don't
have this, and you don't have that. Then they'll come
back the next day like like they're just running off
of a random checklist. Right. They came in the last
day and said, like with a smile, like we got
(05:24):
good news. You got loopis no clue what loopus is?
No clue that it was a small percent of males,
especially Blackee black black men that you know, had lupis.
I'm in a complete blind So now there's to the
(05:47):
point of how to treat you know my situation, and
it was just months and months of trial and error.
What do you have? I have joint loopers, and my
loopis affected. My kidneys, My loop is affected my kidneys,
(06:10):
and I was on such high doses of pregnant zone
that my kidneys were failing. After a certain period of time,
I was just constantly on this high doses of pregnan
zone to the point of my cartilage and my shoulders
(06:31):
and my hips were to the point that they disappeared.
So now I'm rubbing bone on bone and this time,
now it's time for surgery. So I had to. In
twenty thirteen, I had both of my shoulders replaced. They're
titanium from here to here. And then it came to
(06:53):
my hips. Both of my hips were replaced. It's titanium
from here to hear.
Speaker 2 (06:58):
So if I got the timeline correctly, two thousand and five,
you got yes. And then twenty thirteen your bones were
deteriorated and you have to get all official replaced.
Speaker 1 (07:08):
Twenty thirteen and twenty fourteen, and that period of time,
I was thirty five years old, and now I have
issues with going through the airport.
Speaker 2 (07:21):
It's so amazing how some medicine that can work for you,
because pregnant on is very good, yes, but if you
are on a high doses of it, it deteriorates your bones.
So you have to be very careful with that.
Speaker 1 (07:30):
You have to think about the period of time that
I was.
Speaker 2 (07:34):
You know, so your doses never changed.
Speaker 1 (07:37):
Oh well it for a long period of time. It didn't.
And that after the damage was done and we started complaining,
then they were looking for alternatives. So it decreased for
you know, a short period of time. But fast forward
(08:00):
after excuse me, I received my transplant. Now I'm just
on five milligrams, but it's it's mandatory.
Speaker 2 (08:11):
So and you do not look like what you've been through.
Speaker 1 (08:14):
Oh no, well I I never claimed it. And we'll
just backtrack a little bit. So once we found out
that my kidneys were declining, and uh, I was seeing
a neurologist, you know, on a daily and you know,
he was at this hospital that I don't attend anymore.
(08:37):
I'm not going to say no name the blast, thank you.
But I had ended up having once upon a time
pancreat titus and like you know, stomach messed up or whatever,
and they're doing the ultrasound and everything, and doing the
ultrasound and my kidneys that were failing, they seen a mass.
(09:03):
So they further investigated and come to find out the
masks were tumors. So in my left kidney, I had
a tumor so large that it was about to go outside.
The kidney was that big. On my right side, I
(09:27):
had another mask that was just millimeters. Come to find
out they were two different types of cancer. And because
that my kidneys were failing, we just came out to
a decision of let's just take both kidneys out.
Speaker 2 (09:45):
So both removed.
Speaker 1 (09:46):
Both my kidneys were removed.
Speaker 2 (09:48):
Wow.
Speaker 1 (09:49):
Then I had to do dialysis and I did dialysis
for seven and a half years. And I just want
you to understand, at no point did I pity myself
or no point did I feel sorry about myself. I
felt that, you know, this was probably God's work to
(10:12):
slow me down and you know, just realign me on what,
you know, what life was really about. Because I can
just be honest with you, I wasn't doing the right thing.
You're not taking care of my body, and I'm you know,
ripping and running. God has a way of sitting you down.
Speaker 2 (10:31):
He does, I will send you down and still let
you live.
Speaker 1 (10:34):
Yes, And you know it's it's it's for you to
pay attention to the signs. You know, you don't pity
yourself or anything. You just sit down and you realize
what's going on, and you will have or a greater
look on life. For sure, you would, you would have,
(10:56):
you would appreciate a lot of the little things that
people for granted every day. Now, mind you, seven and
a half years no kidneys, and I don't want to
be funny, but I did not urinate for seven and
a half years.
Speaker 2 (11:15):
Wait a minute, what do you mean that you did
not have any output?
Speaker 1 (11:20):
I did not period. You don't have any kidneys to fill.
It was really weird. And uh, it was very mandatory
for me to do dialysis three days a week. And
you had to because you know, your kidneys filter all
(11:44):
the toxins and everything out of your body, so it
was mandatory. So it's four days, I mean four hours,
three days a week and instill. In those situations, you
have to watch your water intake, you have to change
your diet, you have to do so many different things
to make sure that you know your your body is correct.
(12:06):
So and with that, I used to get up four
o'clock every morning, go to dialysis day in and day out.
A lot of people complained. And this the the crazy
part about it is that I witnessed so many people
(12:27):
passing away. People sit right next to me and you know,
they're they're going through their phase and they're kicking and screaming.
And I never complained, you know, because this person wasn't playing.
Next day I come back, I'm like, we're so and
so they're like, she just passed mm hmm, you know,
(12:48):
and it was just it was eye opening. So I'm
just grateful to still be existing.
Speaker 2 (12:56):
That is so dope. Like I did so many interviews
and met so many different people, and your story has
been the most interesting. I love it, like we can
see her all day and just talk about this particular moment.
But I don't want to do that. I want to
continue to move along. But that is amazing. And I
feel like, you know, when we are in those situations alone,
because even though we have support, we go through all
(13:18):
of that alone and we are in tuned to God.
You know, all those things that you say that we
think about, and we never complained and he set us down,
like that's what it's supposed to be. Like, I feel
like it's supposed to be like you know what I mean,
you sit there and you're doing so well. You're walking,
you're talking, you're doing all of the things because you
decided to listen. Definitely most people it's like, oh, well,
(13:41):
you know, because I was one of those people, like
we had a bad relationship in the beginning and when
I got diagnosed, like how could you do this? But
then you know, as I said, and I thought, and
I was going through those things, and I'm like, why
not me right, because I'm not. I'm not stopping from
anything that I was doing. I still with the college,
I'm still a lot of things. I'm doing a lot
(14:01):
of things. And I feel like he gave me this
for a reason to help other people, because it's like,
what do loopus is supposed to look like? You always
like you don't look like you haven't And it's like, well,
what do I supposed.
Speaker 1 (14:11):
To look like?
Speaker 2 (14:13):
You know what I mean? You gotta want to take
care of yourself, You gotta listen, you gotta be an
advocate for yourself. You got to speak up. A lot
of doctors don't know what they're doing. It is a
chart that go off of and it's some excellent doctors
that do know what they're doing as specialists that's going
to care you and take care of you. So it's
definitely for us to advocate for others while we're living
healthy with Loopus is definitely for us to bring other
(14:34):
people in abundance. So I definitely appreciate that the title
of this episode the Invisible Inheritance. What does that phrase
mean to you personally?
Speaker 1 (14:48):
M Let me think, Well, I'll tell you this when
when I when I accepted what was going on, I
(15:10):
became a more productive person. I was an advocate once
a year, took it upon myself. I had a board
of four or five people and I just threw a
Lupis awareness picnic and we had it at Jackson Park.
And I did this for like five years straight. From
(15:30):
everybody together, I had a speakers to give more information
about loopis enlightened, you know, because a lot of people
really didn't you know, just as well as myself. I
really didn't know anything about lupis and you know, and
I think it just made me seek more information and
(15:57):
give more awareness to the people. So I mean, well,
you know, you're not going to say lupas was a
great thing, but you know it was something that made
me be more knowledgeable and just try to spread the
word more. Yeap.
Speaker 2 (16:12):
So my question to you, once you accepted what you had,
is that when you start educating yourself.
Speaker 1 (16:17):
Definitely.
Speaker 2 (16:17):
Yeah. So that's something that I do teach because I
feel like you got to accept it. Once you accept it,
you know you are willing to learn, yes, because a
lot of people have things and they don't know their treatment,
theself and our doing right. They're just walking around with
what it is that they have, right, and that's beyond
invisible illness. It could be anything, right.
Speaker 1 (16:37):
I agree.
Speaker 2 (16:39):
We're going to move on to family legacy and health.
You share that lupus runs in your family. Can you
talk about how these invisible inheritance has affected your family
across generations?
Speaker 1 (16:50):
Okay, So, I like I was the first person to
be diagnosed with lupus, and then my mother was getting
sick and she's happened like some of the same you know,
familiar issues that I was having, especially like with joining in.
(17:13):
You know, we older people, they'll think, you know, are
we cramping up? Oh? This is nothing but authoritis or nothing.
Speaker 2 (17:18):
No, no, took her to the doctor.
Speaker 1 (17:22):
Come to find out she has lupus.
Speaker 2 (17:25):
What kind does she have?
Speaker 1 (17:27):
It was hers is just joined. Thank god, hers is
just joint. My son, I have a son named Tashami.
The worst loopus of all. This lupus was in his brain,
the back of his brain, to the point that he
was having so many seizures, falling out, hitting his head
(17:50):
on shelves in public and all that. It was so bad,
to the point that they had to introduce he was
have so many seizures back to back. They had to
introduce him, induce him into a coma, you know, to
keep him from you know, having seat and still to today, well,
(18:10):
you know he's great on his upkeep and you know,
taking care, but he's still on the high dosage of loopis.
I mean sorry, that's a high dosage of pregnant zone.
And I have told him that you need to be careful.
You you know, you inform your doctor of that, because
I don't want you to go to the same thing sick,
(18:30):
you know you went through then last but not least.
I have a sister, come to find out she has lupers.
So anytime my children go to the doctor or any relative,
especially in my immediate family, I that I informed them
(18:53):
to let the doctor know you have a family history
of lupus, so they can get ahead of sign and
you know, they can prevent anything or you know, other
than me finding out way later and you.
Speaker 2 (19:08):
Know, the diagnose it so and it's hard to reverse things.
Speaker 1 (19:12):
Yes, definitely.
Speaker 2 (19:13):
So how is everyone doing at this point?
Speaker 1 (19:14):
Everybody is great?
Speaker 2 (19:15):
That's dope.
Speaker 1 (19:16):
I love to hear that, everybody.
Speaker 2 (19:18):
I love to hear that. Okay, how did you first
find out you had loops? And what was your initial reaction?
So you told me that you were really sick, but
you didn't say like how it started, so like did
you just wake up one morning you couldn't get out
of bed, or you know, were you just very fatigue?
Speaker 1 (19:38):
Like no, it was it was all of the above.
But it was slight at first, but it just rapidly
starting getting worse. I'm getting worse and worse. And you know,
at first you think, oh I just am sick or whatever,
or oh I just I'm just not hungry or whatever,
but I mean it rapidly got worse.
Speaker 2 (20:03):
So you literally just woke up and you felt that way.
Speaker 1 (20:05):
Yeah, you know, you started feeling that way gradually, and
then it just rapidly got worse, and they got worse
to the point point that I'm like, okay, this is not,
you know, something that is going to go away. I
need to go figure out what was going on.
Speaker 2 (20:22):
Yes, okay, So we're going to move on to double
battle loops and cancer. In addition to Lupez, you also
focus in things that you have cancer. How did you
cope with fighting on two fronts of the same time.
Speaker 1 (20:40):
Hmm, let me tell you this. I want to tell
you this. So when I let me tell you how
I was informed that I had cancer. I went to
pick up my grandma there because she had an appointment
(21:03):
somewhere or whatever. So we're in the hospital. Well, I'm like, well,
I have an appointment, you know, grandma, you know, just
coming here. She's sitting in the hospital room with me
and I'm sitting there and the doctor comes in and
he's like like real nonchalant and this and that and
(21:25):
you know, yeah, you got cancer and this and that
cancer this, and he just kept talking. I'm like, whoa, whoa,
wait a minute, just stop right there, back up. What
did you just say? And he like, yeah, you know
you I don't know how I felt. I was just frozen.
(21:45):
I was just numb, you know, I mean completely dumb.
This was just straight out the left field, you know.
And I went home like anybody else, I thought the
worst of the worst. And now I'm like just for
like a good three four days, I'm now I'm thinking
(22:09):
like how many days I got to live and all
this is the end or whatever, and uh, I think
the Thank God I have a wife that is a nurse.
We sat down, she went into great depth in detail,
and we did research and all that, and now I'm
(22:32):
already dealing with the failing kidneys and we got this.
And she's like, you know, we went into the whole thing.
So after panicic the panic attack, we just took a
head on like we're going to do this. You know.
We got that, we got to change some things around,
(22:53):
but we're going to do this, you know. And she
didn't have to encourage me that, you know. Uh, we
go on fight as I'm like, yeah, I got things
to do, I got life to live, I got living,
you know, and I want to give a shout out.
I love you so thank you.
Speaker 2 (23:14):
Oh my god. Yeah, nurses, we will We will definitely
do that. We would definitely do that. That's so dope
that you had that support system that helped you through that.
So after the loop is and you found out the cancer,
it was just like, oh my gosh.
Speaker 1 (23:30):
Yeah yeah. I mean, after I was calmed down about
the cancer part, I'm like, let's go.
Speaker 2 (23:40):
Let's go, true fighter, True What lessons have you learned
about strength resilience through these overlapping battles?
Speaker 1 (23:50):
Oh? I am not always have been like the go
to person in my immediate family. So like, I can't
really show no weakness because I got all these people
looking at me and depending on me, and I don't
(24:11):
claim no illness. Like I said before, God has the last,
He has the last, seriously, you know. So I'm just
in the whole thing about it. Like a lot of
people used to look at me, and it seemed that
(24:33):
people will get upset like you don't seem sick, you
don't act sick, you know, And I'm like, no, yeah,
you know that's what That's what people do. They feel
because if you have some type of ailments, ailment, you're
supposed to sit down and hold your head down and no,
(24:57):
I have things.
Speaker 2 (24:57):
To do that's say I'm a purpose you know, seriously No,
But and that's sad because that's how a lot of
doctors are providers. Are they when you come in, they
are monitoring you first when you walk through the door.
So how you walk, how you dress, how you smell,
are you groomed, and all that determines if you say
(25:20):
that you're in pain, if you really are in pain,
because they want pain to look away, which they're trying
to break the stigma down. But that's very sad because
it shouldn't. You shouldn't have to go and look like
what you feel like in order to get the help
that you need.
Speaker 1 (25:34):
Check one of my very, very closest friends. One day,
we're just all figured this out, and I think this
set the tone with everybody because he actually called me
and I'm like hello, and he crying on the phone.
Speaker 2 (25:54):
Yeah the phone, you know about be making me.
Speaker 1 (26:00):
So And you know what after that, he called me,
he apologized, he said, let's go. Yeah, there ain't no
pity party here, no, not at all.
Speaker 2 (26:15):
Who did you crying for?
Speaker 1 (26:18):
So?
Speaker 2 (26:19):
Yeah, that is funny. I love it. It needs to be.
I just love it because how strong you are? You
like I look at myself when I'm looking at you,
and that's how I am. Like, it is what it is,
you know what I'm saying, Like if I just need time,
I will communicate that. Maybe maybe not. It all depends
because we don't like to look weak. But at the
(26:40):
end of the day, it's like what is weak, you
know what I'm saying, Like we we are entitled to
risks and not feel bad. We are entitled to have
our moments and not feel bad, you know what I mean.
And people be wanting explanations all the time. But as
for me, I'm like, if I see her and tell
you everything I'm going through, that's like saying that I
have what I have right owning it. And I don't
(27:02):
like that, and people want that so they can better
understand it. Just like at the same time, you're taking
something from me by making me feel vulnerable, you know
what I mean. Like if I need you, I'm going
to call you for sure, but to be in here like,
oh my god, you know, I'm just so it's like
it's really nothing that you can't understand it.
Speaker 1 (27:19):
And the thing about it is like if you claim it,
you know how mentally draining it is. It is you're
gonna tuck yourself in the corner.
Speaker 2 (27:27):
And no, it's so hard to get out of it.
And once you accepted that was the hardest battle ever, No.
Speaker 1 (27:35):
Saying keep fighting. Biously, you lose time having a pity
party for sure.
Speaker 2 (27:44):
For sure where those moments where you felt like giving up?
And what pulled you through?
Speaker 1 (27:54):
I can't recall the moment. No, Seriously, you know you
get tired sometime. But Noah, I hate to keep repeating myself,
but I got stuff to do. Seriously, No, I'm being
I mean, I'm being so serious. I never lost a beat,
(28:17):
you know, doing this all right? Just imagine if I
just I'm all somber and I'm in the corner. No,
you can use that energy with figuring out, you know,
what's the best way to change your diet? What's the
best way to do this?
Speaker 2 (28:32):
You know? No, I love it, love it.
Speaker 1 (28:37):
Keep your head up and keep it pushing.
Speaker 2 (28:40):
Serious people don't understand who like works are very powerful. Yes,
it all plays in your mind, and your mindset has
to be there for you operate properly anyways, So it
takes a lot to even have that right Wow, Okay.
Emotional and spiritual impact chronic illness often carries any emotional
image to wait, what have been the hardest part for you?
Speaker 1 (29:06):
No, I mean it was just well more so just
thinking about the end, because now I can't tell you
that it was simple, because I had a lot of
major setbacks. I had a lot of you know, Okay,
well now you have cancer, so you got to wait
(29:28):
five years to be cancer free to even get on
the transplant list, you know. And then I ended up
having an infection in my ankle. So first one minute,
I'm on the list. Now I'm off the list now,
you know, until we get this, you know, figured out.
So that was two more years, and it was even
(29:53):
situations that I finally get clear for everything. Got the
call all in the middle of the night. Yeah, come on,
you know what I'm saying down and excuse being, we
have a kidney for you. Got into the room, My
wife happy, I'm happy. We're in the room, getting dreaded
changing everything and were in the bed taking a nap
(30:17):
because we got there like three thirty in the morning
and come wake us up at like four forty five
and hey, kidney, it's not a match, you know, how heartbreaking.
I'm just looking for my wife. She's she's broken up,
and they're like, oh, well you can, y'all can just
(30:37):
sleep here, and he's like, no, we didn't get about
it here, you know what I mean. So it was
just a lot of two steps forward, you know, one
step foward, two steps back, you know what I mean.
So when we finally finally got the call and they
told us this was during the COVID area, Oh wow.
(30:59):
So we got packed up everything, we ready to go.
We're getting to the hospital and right at the door,
they look and tell my wife you can't go up.
They needed security for her, they really needed I'm trying
(31:25):
to her like she oh, she went in. But and
now you have to think about the whole time that
I'm I'm up there, I'm up there by myself and
we can only talk on the phone or video chat
(31:45):
and all that, and that really hurt her so so
bad that she couldn't be by my side through this journey.
And you know, we well we've been you know, through
so much and she couldn't you know, be there for
the end process.
Speaker 2 (32:01):
So it is I can only imagine, Oh my god,
how has your perspective on life, family, or legacy shifted
because of lupis in cancer.
Speaker 1 (32:18):
Don't miss a moment.
Speaker 2 (32:20):
Yeah, for sure, I.
Speaker 1 (32:21):
Don't miss a moment. Love heart, forgive and because life
is very short, for sure, So you know, you gotta
you never know, dumb body knows you know, so chairs
what you have love and love heart and hey let's
(32:41):
keep it going.
Speaker 2 (32:43):
Yeah, I'm with you with that. Where did you draw
strength from faith in family and community?
Speaker 1 (32:50):
My family? My family always been there and that's my rod,
especially the.
Speaker 2 (32:57):
Soldiers, that's my rock.
Speaker 1 (33:02):
Seriously, even when it was time that I didn't want
to get up, we're finna go, you know, put that down.
You can't eat that, you know, you can't eat that. Yeah,
she was always on point. Seriously. It got to the
point that the doctor stopped talking to me and EDG
just asked for her.
Speaker 2 (33:22):
Don't because she probably wants to know exactly what's going on.
What they say.
Speaker 1 (33:27):
My wife's been a nurse for going on twenty five years.
She's been cardiac nurse, long term nurse. Yeah, she wears
a lot of hats and.
Speaker 2 (33:40):
Yeah, that's funny. Did you sneak some things when she
thought you're gonna have now?
Speaker 1 (33:45):
Oh, what would you do? I had to go to
work sometimes.
Speaker 2 (33:54):
Did you ever have a reaction for some stuff that
you had there?
Speaker 1 (33:59):
Truly was that you got to understand when youalysis you
have to have low salty and diet, You're not gonna
stop me from frying chicken man oxtails. And I'm you know,
(34:19):
I'm a flavored type person. When they get to dialysis,
they're like, you got so much water and all this
and they gotta take it off. And they called and
let her know, likeah, he was way over and yeah.
But hey man, so you it's funny.
Speaker 2 (34:40):
We gonna move on to the advocacy and legacy. How
did you see your story as part of changing the
legacy for your future generation and your family?
Speaker 1 (34:51):
Just be aware, you know, with a lot of people
don't do especially men. We have something going on and
you want to ignore it or no, especially when you
get up to my age. Excuse me, you have to
(35:11):
go to the doctor, get checked on. You know, I
have people that are close to me that could have
prevented colon cancer and you know all these different things
and you know, no, man, put your health first anything.
(35:33):
Do check ups. It's it's not unmanly to you know,
go see a physician. You know, it's definitely. It's not
unmanly to go see a physician because we're stubborn, you know.
But if you if if you stop thinking of yourself
(35:54):
and start thinking about the people that you love, the
people you know, I think about my grandkids, is my
you know, my my family, and these are all the
people that depend on me, and they will hurt so
bad even not only if I passed away, but if
I passed away on something that I could have prevented.
(36:16):
So go see the doctor. Yes, always, yes, I love it.
Speaker 2 (36:25):
If you could speak directly to someone newly dinosed facing
a double dinos, what would you want them to hear?
What would you say to them?
Speaker 1 (36:36):
I will tell you to before you panic, be informed. Yes, research, yes,
you know, go go in depth and you know, and
find out what is your situation, what is the what
is the probability or how you know? What could you
(36:59):
do the better yourself to treat your illness? You know,
and just don't go by what the doctor said, because
a lot of people don't understand a lot of these
medical terms. So do your due diligence and explore on
your own.
Speaker 2 (37:16):
Yes, for sure, people always act like people always ask
like you know, what is that, and I always tell
them go reading you come tell me, because it's different
when you're communicating that with someone versus reading it it.
It's different.
Speaker 1 (37:27):
Right, So there's a lot of information out there for sure.
And if you loopus, if you have lupus, you got
to understand. We are called loopus warriors, right, so you
have to fight, understand research, you know, don't don't have
a pity party, stand up strong because this is only temporary.
(37:48):
It can it can be fixed. That's all you have
to do is gain knowledge for yourself about what's going
on with you and your body.
Speaker 2 (37:57):
And when you are intul in your body, your body
tell you when you have too much of anything overly
doing anything like it definitely talks to you.
Speaker 1 (38:04):
Definitely pay attention to the signs.
Speaker 2 (38:07):
Attention to signs. And now I'm telling people to you know,
know your blood type, your blood type, because depending on
what blood type you have, you cannot eat certain things.
Even though they say like everything green is we're supposed
to have it, but if you have a certain type
of blood type, you can't eat that, right, you know,
so you are already inflaming your body. So for sure,
(38:28):
what role does advocacy and storytelling, play and healing and
raising awareness.
Speaker 1 (38:35):
Oh there's a major role. You know. The more that uh,
the more that you inform in the awareness and raise awareness,
you know, the the more so when when especially well
when when I first had it, Like I said, I
was the first one. Nobody in my family, nobody around
(38:57):
me absolutely did not know anything about loopers or what
it was or you know, so a lot of people
who didn't even understand my story and what I was
going on. You know, it was just way over their head,
you know, until I started really getting sick, and then
everybody wanted to you know, tune in and just seek
(39:21):
more information so they can relate to what I was
going through. So awareness is key, seriously, and especially with
a person like me that have this illness going through
my bloodline. Oh, everybody has to know. And that's why
I was holding the gatherings for Looper's Awareness. We're passing
(39:45):
out pamphlets, were talking about it. You know, I just
I just wanted to just spread the word because there
were so many people that didn't have a clue of
what it was.
Speaker 2 (39:56):
And I still don't exactly is wild to me? Why
do you think loop is is not giving the publicity
in needs as far as cancer, I couldn't even.
Speaker 1 (40:09):
Tell you do. And if you look at the statistics
of so many people that has this, you know, and
it's like on the back burner because and I believe
because they when they say a person have loop as
they go, well it's uncurable or whatever, you know what
(40:32):
I mean. But no, it should be put to the forefront,
just like everything else, and we should start researching and
just you know, stop you know, shortstopping the information or
the research on that, you know what I mean. So
I think that we should have the same much awareness
and knowledge and research just as well as all the
(40:54):
other ones. You know.
Speaker 2 (40:56):
So do you or I heard you say you did,
So did you stop doing the picnic that's what you're doing?
Speaker 1 (41:02):
Yes? I stopped doing them. I I I felt that
people were just taking for granted of what I was
doing because everything I was doing was out of pocket,
(41:24):
out of my pocket, and I didn't mind because I
wanted to do it my way. But once you're you're
having these big events like this, a lot of people,
I felieve it took advantage of it and they just
felt like it was just a big you know, a
big park you know what I mean. And I just
(41:46):
didn't like the avenue that it was going.
Speaker 2 (41:49):
So I just pulled out, wasn't your heart hearts to do?
Like is like do you miss it that you wish
that you were.
Speaker 1 (41:55):
Continue And a lot of people asked me, and my
son actually the one has Lupez. He asked me just previously,
like what you think about, you know, having another one?
And I said, if I can answer you right now today,
I would say no, I said, but I would give
(42:16):
it a lot of thought.
Speaker 2 (42:17):
And I say that because I also have a non
profit organization called Loopus has my face it's POBC three
a little bit over five years in the game, and
I can definitely understand what you're talking about, Like it's
very expensive when the grens don't come through or the
masterships and all that stuff is to come through. And
it's been many times, and I'm just like even the
day of I'm like, yeah, but you know what, I
(42:37):
want to do it. But it's like the feedback that
I get, like a lot of warriors are very private
and they won't do it right then and there. But
the feedback that I have gotten with all of the
events that I have thrown the book that I've broke,
Like it's just like you can't, you know. And that's
what actually keeps me going because it's helping them right
(43:00):
in some way. For my fashion is helping them and
share their stories is you know, they look forward to
the things that I'm doing. And so my model is like,
I don't care if it's one person that came and
I spent all of this money, like I help one person, you.
Speaker 1 (43:13):
Know what, I think?
Speaker 2 (43:14):
Me and you should sit down the turn We should, seriously,
we should.
Speaker 1 (43:18):
I know. But the reason why I say that is
because you probably will. You definitely have the largest platform
of the Looper's Warriors, and so like when I was
doing it, I was doing it basically for it was
(43:39):
like a lot of friends and family that just attended,
you know, we tried to inform them and all that.
But if we can reach out to a lot of
people that does have Loopers, oh yeah, I'll do it again.
Speaker 2 (43:53):
We definitely I will do it because I think that'll
be dope.
Speaker 1 (43:57):
I will do it again, and we'll do it really big.
Speaker 2 (44:01):
You speak about language.
Speaker 1 (44:04):
And that you know that right there with yeah.
Speaker 2 (44:08):
Yeah, and then like even after that follow ups you
know what I'm saying it's always good to have a
follow up because people always want to know what's next.
Because I'm gonna say we because it's week, we feel
unseen and unheard and things and that, and so when
we have someone that we can talk to, events and things,
because sometimes people don't have the energy that means you
have and they can't do a lot of the regular
(44:29):
things that we do. So having those type of events
just for our warriors, like, they definitely appreciate that.
Speaker 1 (44:36):
So I think you should agree, you know.
Speaker 2 (44:42):
So we're gonna move into closing what's next for your journey?
Any projects, advocacy work, or personal goals you like to share.
Speaker 1 (44:53):
I'm sorry, but you got my wheels turning down so
we could put something together. I like to hear that.
Speaker 2 (45:03):
I like to hear that.
Speaker 1 (45:04):
Yeah, I think we can definitely put something together.
Speaker 2 (45:06):
Do you at any lupas anything that's so crazy? So
have you heard of anything that I've done?
Speaker 1 (45:14):
No? Do you? Im sorry that I don't mean to
interrupt people. I'm kind of a private person, I am,
so I have no but I'm really really honored to
meet you and I think we can do some big things.
Speaker 2 (45:35):
Thank you. I appreciate that. I appreciate that because having
a meal like it just changes the game because a
lot of meals don't come forward to happen and they
I feel like they take it worship than the women.
So to have someone that looks like you talk like
you like, I think that would be so dope.
Speaker 1 (45:56):
Cool.
Speaker 2 (45:56):
Okay, I don't how can you How can listeners connect
with you? Support your Johnny or anything that you following
or followed along. I know you said that you're private,
but like they're going to see this if they want
to talk to you or anything like that, and it's
okay if it's a no. You know you avo kids.
(46:21):
So I mean advocacy, you know you speaking to people, right, yeah,
and it's all in your time and on on your turn.
He did say he was private, you guys, so if
he does do this, you have to show him grace.
Speaker 1 (46:35):
Well I'm not really on the internet thing like that,
but I do have a TikTok plage. I'm going to
TikTok the lab. So you got tick tack, but you
can reach me at uh Donnie Love seventy four d
(46:57):
O N N I E l O V.
Speaker 2 (47:01):
Tiktag to Ton can you please drop the tags so
they can and just let me know how that turned out.
Speaker 1 (47:08):
I will.
Speaker 2 (47:09):
I would love to see you know who all reaches
out to you because people gravitate towards individuals, you know
what I'm saying. So I appreciate you so much for coming.
I can't wait till you come on again. It's been
such a pleasure. I definitely will thank you guys for
tuning in to another wonderful episode of Lupen's Has No Face.
(47:32):
Now remember if you need any type of counseling, coaches
and accepting anything that you're doing that you feel stuck in,
please do reach out to me. I am also a
life coach as well. And you can also purchase the
book of God Living Well with loop Is on Amazon
or www dot lupasasoface dot com just to get any organizations.
(47:53):
It's not even just for Lucas Warriors, it's for everyone.
We are live, Everyone's down all platforms at six thirty.
If you did Mige the show, please go to Lupas
Tasmofa's podcast and while you're there, like share and subscribe
until next time.
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