May 1, 2025 • 36 mins
The journey of patient advocacy begins with a single, powerful truth: your health story matters. In this debut episode of the CHLMS MEDI HELPZ Foundation podcast, we meet Jacquiline Cox - lupus warrior, author, and living testimony that medical predictions don't define your destiny.
Three years ago, a doctor told Jacquiline she had just three months to live. Today, she stands as an ambassador for Walk for Lupus Now, a 15-time bestselling author, and a beacon of hope for those navigating the complicated reality of invisible illness. With raw emotion and unflinching honesty, Jacquiline shares the daily challenges of living with lupus, fibromyalgia, and thyroid cancer while managing a business, raising a family, and advocating for better patient care.
"Just because you can't see it doesn't mean we're not struggling," Jacquiline reminds us, challenging the dismissive attitudes that chronically ill patients often face. Her practical wisdom offers a roadmap for others: track your symptoms, know your medical information, understand your insurance coverage, and most importantly, build a circle of support who truly understands your specific challenges.
The foundation of this podcast rests on a revolutionary concept - patients don't just deserve a seat at the healthcare table; they need their own table where experiences can be shared without judgment, where education replaces fear tactics, and where collective wisdom creates paths toward better health outcomes. Whether you're battling chronic illness or supporting someone who is, this episode offers both practical strategies and emotional sustenance.
Have a patient story that deserves to be heard? Reach out to the CHLMS MEDIHELPZ Foundation. Your voice matters, your experience can heal others, and together, we're creating a patient uprising built on empowerment, education, and community.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:27):
Thank you Well, hello everyone and welcome to May 1st
2025.
I am the CEO and founder ofCharms Many Helps Foundation and
Many Helps LLC.
Yes, there's two, but they'reone.
(00:48):
The main goal for Chalms ManyHelps Foundation is to make sure
that patients, especially thosepatients living in marginalized
communities, are able to beempowered, engaged and educated
in their own patient journey.
Now, what a lot of times willhappen is you'll hear people say
(01:09):
you know, hey, we're trying tohelp the patient, we're trying
to help the patient, we'retrying to help the patient.
You've heard me many of you haveheard me, for up to two years,
put out that call A patientuprising is what's needed.
And, as I said, and you know, Iwas fortunate enough to be
invited as a voice of a patientto quite a few events and, as I
(01:31):
said and I thought about it, Isaid you know what?
It's time for the patients tospeak out, because I could speak
for you, but, guess what?
You can speak for yourselves.
So I welcome you to thislaunching of the Choms MediHelps
Foundation podcast, speakingwith Sandra L, and so I'm not
(01:53):
going to speak long.
I'm going to maybe do anintroduction because this is all
about the patients.
So, if you are a patient thathas experienced, you know and
this is not a bash, bash, bash,this is a lot I want somebody to
know my story.
I want to tell my story.
That's what this is about.
So, if you are a patient thathas a story to tell, if you know
(02:15):
a patient that has a story totell, if you're in the patient
community, the goal here is tomake sure that we get all our
patients to be proactive.
We don't need you no longer dowe need you to be retroactive,
or we need you to be proactive,taking care of your business
(02:36):
before things happen, so you canstop emergency accidents or
emergencies from happening.
So what is this story?
What is this podcast about?
It's about you, you, you, youand your loved ones.
Okay, today is May 1st.
As I stated, it's actuallyLupus Awareness Month.
(02:56):
Please take a listen to ourfirst honored guest, mrs
Jacqueline, because I got to getthat, mrs right.
There's a reason for that.
Speaker 2 (03:07):
I'm not going to say a word, I'm going to let you go
and I'm going to correct youafterward.
Speaker 1 (03:12):
And she's going to tell you about her patient
experience as a lupus warriorand a lupus survivor.
And then she's going to tellyou how she, instead of her
taking that time glass that shewas given when she received that
diagnosis and said, well, it'sme, she's like, uh-uh, they
showed up at the wrong body andshe took control of her life and
(03:34):
the things that she did.
To encourage you as a patientthat might be saying, oh my god,
they told me I got cancer.
Oh my god, they told me I haddiabetes.
I'm gonna die.
No, you're not.
You're gonna do very similar towhat Jacqueline did and you're
gonna take it by its horns andyou're like this is me and this
is what we're gonna do.
So on to you, Miss Jacqueline,could you please introduce
(03:55):
yourself your story and what itis that you offer to the patient
community to help them getbetter?
Speaker 2 (04:02):
Hello MetaHealth world.
I am Jacqueline Cox, also knownas Listen Linda, and I am a
lupus warrior.
I have lived with SLE, which issystemic lupus.
Eros Girl, it started with an E.
I wish I could tell you youwhat to say, but they give you
(04:24):
this long word that you cannotpronounce.
But in so many words, sle.
And it's not just a disease,it's a storm that never fully
passes.
Okay, um, it's flares withoutwarning, attack, it attacks your
organs and it drains yourenergy, but still I rise, like
(04:44):
Maya Angelou, right, there aredays I smile through joint pain,
days I parent, serve and lead,while my body, it just wages war
against itself.
And you wouldn't know it bylooking at me.
But I've had to fight foranswers, for treatment and for
understanding, because lupus isoften invisible.
(05:07):
But I am not Right.
So I speak not just for everywarrior who's ever been told you
don't look sick.
You know, I get that a lot.
You don't look sick.
You don't look like what you'regoing through For those who've
been misdiagnosed, dismissed andmade to feel like your pain
(05:27):
doesn't matter.
So this May, during LucasAwareness Month, I raised my
voice to say we are resilient,we are powerful and we are still
here and together we arefighting for a cure, for equity
and care and for the strength tokeep going, one day at a time.
(05:48):
So me what I do for Lupus andfor SLE and Fibromyalgia and all
different types of autoimmunediseases, I'm not just an
advocate, but I'm actually anambassador for Walk for Lupus
Now.
I'm actually an ambassador forWalk for Lupus Now and the
(06:08):
director and the founder of Walkfor Lupus Now, joan Pendleton
she actually contacted me acouple of years ago.
I started out just as anadvocate and somebody with my
own team and I walked, but Igained so much traction and
donations towards theorganization, she asked me to
become an ambassador.
So I am now an ambassador forWalk for Lupus now and we get
(06:29):
together every September righthere in Chicago, but it is
nationwide.
So we meet up every Septemberand we actually meet downtown
Chicago in different parks andwe will actually walk for lupus
and take donations and stufflike that.
So it's it's not a long walkbecause you know our joints and
(06:52):
stuff, we be aching and we behurting, so it's not miles, it's
literally like a half a milethat you have to walk and it's
really cool.
And I took my kids last, uh, acouple years ago, uh, sandra,
and it was really, really areally a good time.
So they had music, they hadface painting, they had
different vendors out there.
Lupus the Walk for Lupus nowactually also has a sorority, so
(07:17):
like you can join the sororityand it's just real cool.
So not saying I'm happy I gotLupus, I'm not happy I deal with
it every day, but me getting up, dealing with it every day and
going through it and taking mymeds, that's most important.
Because I used to be verystubborn with taking my meds.
Sandra and I did not want to doit and I found myself like
(07:39):
always in pain, always hurting.
My mood changed my memory isgetting lost all the time and it
was because I was neglecting myhealth, because I just refused
to accept the diagnosis.
But 10 years later afteraccepting it, I'm still here.
When I wasn't taking my meds itwas about three years ago I went
(08:00):
to go see my doctor and Iwasn't taking my meds and she
told me she she didn't reallyhave good bedside manner.
She just basically told me ifyou keep this up.
You're gonna die in threemonths, she said.
Even if you start back on yourmeds right now, I don't think
that you're gonna live pastthree months, whatever three
years ago.
So I'm still here, I am takingmy meds, I'm doing what I'm
(08:21):
supposed to do for myself and II'm not.
I don't feel sorry for myself.
I feel like God takes methrough things.
You know, I say this all thetime.
It's a blessing and a lessonand God takes me through things
and gives us platforms like oursso we can help people.
So I'm glad to be here.
I'm glad you invited me here.
(08:41):
Ask me some questions, I am allyours here.
Speaker 1 (08:47):
I'm glad you invited me here, ask me some questions.
I am all yours.
I do want to ask you a questionand I'm so thankful that you
didn't listen to the doctor andso often our patients hear that
you're not going to live.
It's a scare tactic a lot oftimes.
Sometimes it's the truth, but alot of times it's a scare
tactic.
And I know me even being who Iam and dealing with the health
conditions that I have to dealwith, I tell my doctor they know
(09:09):
me by now.
We just can't tell Sandra that,to tell me that I'm not going
to make it, I'm not going tolive.
You know, I've heard that storynumerous times because of things
that I've been doing as far asbeing a diabetic, not taking my
medicine, or I was so busy doingschool and doing life that I
wasn't taking care of me, so mypatient experience actually
(09:31):
suffered.
But what I'd like to focus inon and so I'm so thankful that
you didn't listen it was like,okay, once again you got the
wrong person right, I mean, andit's sad that we have to keep
repeating that and it's sad thatour doctors a lot of times feel
like, okay, the only way thatI'm going to get through to this
patient is by putting a scaretactic on it, not by educating,
(09:53):
and they'll put in our notesthat we're not compliant.
It's not that we're notcompliant, we just haven't been
educated.
We just don't feel like we'reempowered and we just don't feel
like we are or should beengaged in our own health care.
And sadly, that's not the case,which is why we started since,
which is why we started thepodcast, right?
(10:15):
But what I'm interested inknowing and it always amazes me,
how patients that don't look atthe bottle and say, well, the
hourglass, and say, hey, it'shalf full, it's half empty, I'm
just gonna die, you know, I'mjust gonna sit here and I'm
literally I'm just gonna justpass away, I'm just gonna like
left, let life happen is thatyou didn't do that.
(10:36):
No, ma'am you, can you tell usmore about what you did as far
as saying not today, nottomorrow, not next week?
Speaker 2 (10:48):
what you did as far as saying not today, not
tomorrow, not next week, likewhat business go ahead?
Um, lupus is like a shape shift.
Okay, so one day I'm fine, youknow I'm okay, I can get up, I
can move around, right.
But other days, whether I takethe medicine or not, I'm
exhausted, I'm in pain, I'm verysensitive to light, um, and I'm
always swollen, right, um.
It affects my joints, my skinand even my internal organs.
(11:12):
But I still like, I get up, Ispeak, I lead, I love, I mother
and I advocate.
Um.
So you know, I've had peopletell me you too strong to be
sick or you don't look like yougot lupus.
But I learned like strengthdoesn't always look like muscles
or metals.
Sometimes it looks like gettingout of bed when your body aches
(11:36):
.
Sometimes it looks like smilingthrough fatigue or still
showing up when your body saysno, right, so I, so I'm not
alone.
It's millions of lupus warriors,especially women of color.
We go unseen and we go unheard.
We're misdiagnosed, weunder-researched and we let out
(11:58):
of conversations about care.
But not no more, not no more.
That's why I speak up, that'swhy I tell my story, not for
sympathy but for solidarity.
You know what I'm saying Liketo remind somebody.
You are not weak, you are notcrazy, you're not making it up.
It's not just you're tired,it's not just you got fatigue.
(12:19):
We live in with the diseasethat demands too much, and still
we stand and talk.
So to every lupus warrior outthere, this is for you.
Like you're brave, you'rebrilliant.
Warrior out there, this is foryou.
Like you're brave, you'rebrilliant.
You're not defined by yourdiagnosis.
(12:40):
We may be in, but we don'tbreak.
We are not victims, we arevictors.
We are not invisible, we areundeniable.
Okay, I get up every single day.
It's hard, sandra.
It's hard because people expectso much out of me.
You know, I'm a one-woman show.
I'm running a whole brand andmarketing firm and I don't have
(13:02):
an assistant.
My virtual assistant is ChatGPT.
They help me with my documents,they help me with organization,
with my calendar, because atthe end of the day, it's just me
and I have to do that.
I have to do my thing.
I write, I produce, I.
(13:22):
I have clients.
I have a list of maybe 12clients that I'm working with
right now.
I'm doing anthologies when I'mworking with over 30 women, so
that's 30 more personalities.
And then I got my kids.
I got my husband, my husband Igot myself, and it's a lot.
It's a lot, but to God be theglory, I'm glad people look at
(13:42):
me and say you don't look likewhat you've been through.
That's okay for me.
I'm okay with that, sandra.
But people really need tounderstand that just because
people may not have a disabilityor a disease that you can see,
it does not mean that they arenot struggling the same, if not
(14:05):
more, because a pinch to you maynot hurt, right, sandra?
But a pinch to me may be theworst pain I've ever felt in my
life.
So a lot of times people whohave illnesses and disabilities
and deformities that you can see, they like oh, that's all she
going through, oh, that ain'tnothing, that ain't nothing, but
(14:26):
it's something.
Though just because you can'tsee it.
You know I have renalinsufficiency because of lupus.
I have lupus because offibromyalgia.
I have fibromyalgia because ofmy thyroid cancer.
So I'm living with threedifferent autoimmune diseases
and the thyroid cancer is likeoh, that cancer, it ain't bad
(14:47):
because it's not fatal.
What do you mean?
Cancer ain't bad.
Like Sandra, help me out.
Like cancer ain't that's.
You know how many times peopletell me that oh, you got the
good cancer.
You got the one that you don'tdie.
How I'm living with it everyday.
What you mean?
The good cancer?
So you know we have to bemindful of how we treat people
(15:10):
with autoimmune system diseases.
Uh, before I even knew I hadlupus, I always slept, I was
always tired.
I can never keep a job.
I was always burnt out, I wasalways in pain and I always was
like man.
I wonder if this is because Iyou know, I just had a baby.
You know, that was my.
I didn't understand what wasgoing on with my body until I
(15:33):
found out I had thyroid cancerand with that it was just a ball
of different things, like afireball of different things
that was happening inside of mybody.
Because of that, and lupus justso happened to be one of them,
I've been dealing with it nowfor 10 years.
Speaker 1 (15:49):
And you know what.
You bring up two very goodpoints.
And, as it is, none of us knowswhat somebody else is going
through, absolutely positively,we don't know.
How much does it cost for youto be kind to someone at all
times?
What is the cost to you to bekind to that person?
What is the cost to you to, youknow, instead of saying, oh,
(16:12):
they just, you know, they justgot a bad attitude or they're
just like a hot mess and I don'twant to deal with them, what
does it cost you to sit back andsay I wonder what they're going
through?
And instead of instead ofgetting so you know, torn out
because maybe a person is havinga bad day and you just don't
know it, ask, say, hey, youhaving a bad day, because that's
(16:34):
just not like you, so that theycan actually let you know.
You know, I'm sorry, but I'mgoing through something right
now.
You, on the other hand, stepback and say, okay, I'm gonna
give you some time, let me knowwhen you're feeling a little bit
better.
But to push the issue and thepushing patient that's suffering
from comorbidities, meaningthere's more than one, and
usually, when you have onehealth condition, they're
(16:57):
usually gonna diagnose you withsomething else sooner or later.
Right?
What does it cost for you to benice to everybody?
It doesn't cost you a thing.
But there's another point thatyou bring up that I want you to
talk about more, because this isabout patients telling their
story and making sure that weall know.
(17:19):
Right, we all know, we allaware that you don't have to
stop at being a patient.
Before I do go through thatpoint, I do want to let everyone
know.
If you're interested in being aguest on this show, if you have
a story to tell, please reachout to me and say hey, sandra,
how does it work?
How can I be on your show?
(17:39):
If you know someone that wantsto tell a story, their patient
experience?
Come on, people, we got to leteach other know.
We got to let you know thatwe're there for you and that the
support is there for you.
So let us know and reach out tome and say hey, sandra, I would
love to be on your show.
I got my story to tell.
And that's going to bring me tomy second point.
(17:59):
With you is this you justbrought up a very important part
.
We all have a story to tell.
You have a story to tell.
I have a story to tell.
Everyone that's listening tothis podcast has a story to tell
.
Please consider telling yourstories so that others can get
(18:20):
healed and get help by what youtell.
If you keep it to yourself, whois it helping them?
Who is it hurting?
I just said that it doesn'tcost you anything to be kind.
It takes you a few minutes toactually sit down and write your
story out and share your story.
Your story deserves to be told,so can you tell us what steps
(18:42):
you can help them with as far asbeing able to tell their story?
Speaker 2 (18:46):
I just want to say thank you for saying that,
because dealing with lupus isvery hard and it's not just hard
just having lupus, but a lot ofdifferent, you know.
A ball of different things isgoing on and I get emotional
about it because I do have moodswings where I'm not my best and
(19:12):
people it's like people waitfor you to have those moments so
they can write you off or saythey're not going to deal with
you, no more.
But they don't understand thatit's a lot that goes on with it
and I'm so glad that you, thatyou got this platform where we
(19:33):
can really speak about it.
You know, because I have a ballof emotions all the time with
dealing with this and I try tobe as cordial as I can.
But the moment that I'm nothaving a great day or something
like that, just like Peter, youknow Peter didn't have a great
day.
He was upset that, just likepeter, you know peter didn't
(19:54):
have a great day.
He was upset.
He, he had just, you know,seeing his friend getting, you
know, sacrifice and stuff likethat, and he was scared for his
life and he made a bad decision,you know, but he was, he was
just having a bad day.
He wasn't a judas, you know.
He went back, he apologized, hegot him back right with his
friend.
A lot of times people will takepeter's and make them out to be
judas, you know, and it's notfair, especially with people
(20:18):
dealing with lupus, peopledealing with fibromyalgia,
people dealing with thyroiddisease and thyroid cancer.
It's a lot of things that wedeal with silently, that people,
and then, a lot of time, thepeople who wrote me off was
people who knew what I wasdealing with.
So it was like they can't waitfor you to mess up so they can
have a reason to write you offbecause they really they done
(20:41):
with you anyway.
Right, and that's how we weneed to use discernment to
really go to god and reallyfigure out who is really for us.
Because if they quit to writeyou off because you having a bad
day, or you having a lupusflare, or you in pain and you
don't feel like being bothered,or you having brain cloud and
you can't really functioncorrectly, or you overstimulated
(21:03):
, then those are not the peoplefor you.
And if you have a story and youwant to tell your story and you
want to be able to get it out Iam the best at it.
15 time bestseller.
Turn your pain into paper.
That's my, that's my strategy.
Sandra, you ask me what mystrategy?
Turn your pain into paper, putit on paper, box it up and sell
(21:27):
it.
You know, and that's and I'mgood.
I am the best at it.
If I may toot my own horn, I'mthe best at it.
Everything that I go through,everything that I deal with, I
write about.
I write about it and even ifI'm, if I don't make a dollar
off of it, I know that I got itout and I did it in a healthy
way.
So if you want to tell yourstory you have a story to tell
(21:50):
you can reach out to me.
I can help you get through thatprocess.
If you want to publish your book, you can reach out to a friend
of mine.
Her name is Laquita Parks.
She is the CEO of PayProVPublishing.
She can help you publish yourstory.
But if you need just one-on-onetime and you don't know how to
get it out, what strategies touse, you can always contact me.
(22:19):
You can find me on Facebook atthe name below Jacqueline Cox,
right there.
You can send me a directmessage on Facebook.
That's the best way to get incontact with me, not through my
website, not through my email,but I am on Facebook because
that's where my job is, so youcan find me on Facebook, inbox
me directly and say hey, I wantme directly.
Speaker 1 (22:31):
And say, hey, I want to tell my story, I want to tell
my story you know, and I thankyou for that, and I do want to
let people know.
If you're listening and youhave any questions or you have
any comments that you want toadd, please go ahead and do so,
but I want you to know, all ofyou that are looking at this
video, not just listening.
(22:52):
If you're listening, I want youto turn the video on, I want
you to turn towards the videoand I want you to see the tears.
And that's how you know thatthis platform is needed, because
Jackie's not the only onethat's sitting somewhere at a
table.
You know days that she'ssitting at a table where she's
just crying or she's just likewell, how do I get through at a
(23:12):
table.
You know days that she'ssitting at a table where she's
just crying or she's just likehow do I get through this?
And you know her prayers aregoing out.
She's not the only one, so thisis a safe space.
So, as I stated earlier when westarted, you know I've been
getting on my soapbox and sayingwe need to be invited to the
table and I was fortunate enough, through friends of mine, to
(23:33):
actually put my name out in theatmosphere to be able to be a
patient sitting at the table,but guess what?
Now, that's not good enough forme.
Now I'm thinking we need tohave our own table and let
others look at us and see whatwe, as patients, have to offer.
We need to have our own table,we need to have a safe spot
(23:57):
where we're not being judged byanyone because we all know what
we're going through, but thatwe're actually able to come
together and talk, come togetherand find out how did you push
past it?
What did you do?
Maybe for you it's not being apublisher or it's not being, you
know, an author.
Maybe for you it's gardening.
(24:17):
Maybe for you it's, you know,going for walks or walking
working out.
Or you know, going to Biblestudy, but you don't have a
church home or you're not reallysure where you can go, where
you can get that spirituality.
Or and it doesn't even have tobe church Maybe you are of a
different religion, but you wantto get that spirituality piece
because it's missing out of yourlife, because, as I know
(24:42):
firsthand spirituality, if youhave a good spirituality piece
in you and within you, thatspirituality piece, it helps you
blow past many challenges thatyou go through, because you know
where to go to get your help.
You know where to go to getthat internal help.
So this is a safe spot for you.
(25:05):
This is not a spot where you'regoing to be judged, where
you're going to be oh, you'renoncompliant.
Oh, you're not listening,you're a bad patient.
Oh, you're just trying to causetrouble.
That's not what this is.
This is a safe spot where youcan come, you can share your
story or, once again, thosestories of other people who have
(25:25):
been impacted for some type ofhealth challenge, right, and say
, hey, look, this is what'sgoing on.
And perhaps you're like jackiewho, early on three years ago
she stated, was told by a doctorthat you won't make it.
You're threatened by what thedoctor tells you.
There are places that you cango to where you could report
(25:51):
those types of incidents.
Speaker 2 (25:52):
oh, I definitely right right to the, to the um,
the, the supervisor of all themedical staff, and that person
was released and they did giveme their sincerest apologies
because it was not great badside math and that's what
patient was doing, that todiscourage me because the devil
would try to creep in.
And you know I did.
I was very upset about it atfirst but I was like I don't
(26:15):
accept that, I don't accept that.
I bind that in the pit of helland once it came, you know, um,
return back to send them.
I don't accept anything thatthat, that that that causes
confusion or chaos in my life.
You, because God is not theauthor of confusion.
Speaker 1 (26:34):
And you are so true about that and I'm thankful to
know that you reported it.
But this is not about snitchingon the doctor.
This is about, as a patientdeserve the best, the most
optimal healthcare I can get.
So if a doctor is threateningyou, you need to know this.
You need to be educated on whatsteps you could take so that
(26:55):
that doesn't happen to you or toanybody else.
Because guess what If ithappened to you when you leave
the office and you don't saynothing, guess what's going to
happen to the next patient thatwalks into that office?
Same thing, same thing.
It's just going to keeprepeating itself over and over
and over again.
We have to stop it.
You know, plan patients go tothe doctor because they don't
(27:17):
have anybody to go with them.
Tuning into this podcast letsyou know that, hey, there's
people that I can call and maybethey can't physically go with
me to the doctor's office, but Ican take what they're telling
me to the doctor's office andknow how to get that optimal
healthcare, push that optimalhealthcare.
We're all about collaboratingwith our providers, but we want
(27:38):
them to collaborate with us aswell, and if we don't come to
the table with a straight like.
This is the needs that we haveand this is the wants that we
have.
We're going to keep gettingpushed into things that we don't
want to do, and none of us, aspatients, deserves that None of
us.
Mrs Jacqueline Cox, before we gofor the day, I do want to ask
(28:00):
you what are your final pointsand tips that you want to give
to other patients who may begoing through the same things,
similar things as you are, andwho do you give credit to for
helping you?
Because I know you've got asupport network somewhere,
because all of us need one.
Who do you support?
Who do you say supports you asyou go through the challenges of
(28:23):
being the best patient that youcan possibly be?
Speaker 2 (28:31):
The tip that I would give them is to listen to your
body, even when others don't.
Rest is not weakness, rest is astrategy.
Okay, track your flares.
Use a system, journal or app tolog your fatigue, your food
triggers and your stress level,because patterns reveal power.
(28:52):
Right, I wrote these down.
So I'm looking at because Iwrote it down.
Um, speak up at appointments.
Like sandra said, be your ownadvocate.
Bring a list, ask questions andpush for answers.
Push for answers.
Don't let them dismiss you orwrite you off.
Know your numbers, keep a.
Keep a file of your labs, yourmeds and your diagnosis, because
(29:16):
lupus is complex, so you haveto stay informed.
Okay, so make sure you got yourmy chart up to date.
You got it where you can.
Mine is on speed dial.
I can pull up my chart so fastand pull up every single
appointment, every single aftersummary.
I read them all.
I don't just toss the papers tothe side.
(29:36):
I read my after summaries, Iread my aftercare instructions,
just know what's going on withyou and build you a lupus circle
.
Okay, you need people who getit.
Okay, whether it's supportgroups, therapists or people,
fellow warriors online, becausea lot of times, people will love
you and they will support you,but they will not understand
(29:57):
what you're going through, andso you're going to need a circle
of people who understand whatyou're going through.
Ok, it is a Facebook group thatI'm in called Walk for Lupus
Now.
You can join the Walk for LupusNow group.
It is a great support group.
Don't skip your mental health.
Okay, lupus attacks your body,but it also weighs on your mind.
(30:22):
So therapy, prayer, journaling,like I said, write it out, do
what heals you and protect yourpeace like medicine.
Your peace is your medicine.
So stress is a flair's bestfriend.
If you under stress, you'regoing to wake up with a pumpkin
face and a bunch of rashes.
(30:42):
Because I go through it a lot,I know I need to take my own
advice with this Guard yourenvironment.
Guard your environment.
Say no unapologetically andcenter your joy.
Make your joy your main pointin your life.
Whatever it is that brings youjoy I don't know if it's cooking
, I don't know if it's playingwith your kids listening to
(31:04):
music, but whatever it is thatbrings you joy, center that.
Center your mind, your body,your spirit around that and stay
covered.
Mind your body, your spiritaround that and stay covered.
Know your insurance, patientassistance programs that you can
make yourself available to, andMedicaid updates.
Health policy changes canaffect your care.
(31:24):
Trust me, I went through BlueCross Blue Shield Medicaid to TR
tricare and tricare was myprimary right and I had blue
cross blue shield medicaid wheretricare tried to say that I had
blue cross blue shield under anemployer which I'm my own
employees.
I don't even know how theyfigured that, but they were able
(31:47):
to snatch away all the paymentsthat they had made towards my
care for the past four years.
So I had to go back and do anOHI form for TRICARE and prove
to them that I had Medicaid andthey had to go back and
reimburse all those people.
So don't get caught up and notknow your insurance and what
you're covered with.
(32:08):
And know that having a, a stateissued medicaid does not mean
that they are your primary, theyare your secondary.
Your primary is tricare,whoever it is that your employer
, don't let them cheat you outof paying your medicaid.
So, uh, your for your medicalum coverage.
So always, always, always um.
(32:29):
Stay updated with that.
So, for as far as likeacknowledging people who support
me, my family, thank you forloving me on my worst days, even
when I had nothing left to give.
Lord, your presence is my power.
Okay, my children, you are thereason I fight.
Your love reminds me daily.
(32:50):
My pain is my purpose.
Um, and my purpose is greaterthan my pain to my husband.
He carried, he carried awaywith grace girl, he really does
um.
Every hospital visit, everylate night, every I got you.
He is my anchor.
He literally just drove me tothe er that they drugged me
(33:11):
there with fear and tremblingfor this ear infections that I
have.
So you know, my husband is thebest To the Lupus Foundation,
walk for Lupus Now, and all thelocal organizations for
advocating funding research andgiving us a voice.
My sister's in the fight,whether I've met you online or
(33:31):
in person, your resilience, itstrengthens my resilience and we
are a tribe, a testimony and amovement and last, but certainly
will never be really the firstto last and by everything, to
Lord Jesus.
Lord, thank you, god holding mewhen I couldn't hold myself,
(33:52):
turning my scars into my storyand my pain into purpose.
So those are my support systemsand I thank you all from the
bottom of my heart.
And please, please, please,listen to the tip that I gave
you, that Sondra gave you,because we are really here to
help.
This is a wonderful, wonderfulplatform that you have.
(34:12):
Sandra, I'm so, so blessed tobe your first person in your new
season.
She picked me.
She didn't pick y'all, you know.
I had to throw that in there.
Speaker 1 (34:22):
You can come after me though, it's okay you know, and
with that being said, before weend the show for today, what I
do want to say is thank you somuch, because I know once you
were on your way in from theemergency room and you was like
I'm not going to let this stopme, I am going to do this.
Speaker 2 (34:39):
The devil tried it, but I'll repeat that.
Speaker 1 (34:42):
For the lupus warriors out there.
Continue holding your head up.
Continue fighting that fightwhen you feel like you want to
give up.
Don't give up.
You now have a platform.
You now have someone that youcan actually turn to and say hey
, Sandra, how do I get throughthis?
Or this is what happened sothat you can get some resource
(35:03):
help from the choms many helpsFoundation.
We stand at the ready to beable to help you and assist you
in making sure that you get thebest optimal healthcare that you
can possibly get.
And remember, Sandra L speaksand she says this it costs you
nothing to be kind.
It really doesn't.
(35:24):
It's free.
So use your kindness to helpsomeone along the way, because
you never know who you might behelping.
So with that, I'm going to bidyou all adieu and I hope that
you stay tuned for our nextupcoming show that we'll have
another patient sharing theirpatient experience.
(35:47):
Thank you so much for tuning in.
Thank you Well, hello everyone and welcome to May 1st
2025.
I am the CEO and founder ofCharms Many Helps Foundation and
Many Helps LLC.
Yes, there's two, but they'reone.
(00:48):
The main goal for Chalms ManyHelps Foundation is to make sure
that patients, especially thosepatients living in marginalized
communities, are able to beempowered, engaged and educated
in their own patient journey.
Now, what a lot of times willhappen is you'll hear people say
(01:09):
you know, hey, we're trying tohelp the patient, we're trying
to help the patient, we'retrying to help the patient.
You've heard me many of you haveheard me, for up to two years,
put out that call A patientuprising is what's needed.
And, as I said, and you know, Iwas fortunate enough to be
invited as a voice of a patientto quite a few events and, as I
(01:31):
said and I thought about it, Isaid you know what?
It's time for the patients tospeak out, because I could speak
for you, but, guess what?
You can speak for yourselves.
So I welcome you to thislaunching of the Choms MediHelps
Foundation podcast, speakingwith Sandra L, and so I'm not
(01:53):
going to speak long.
I'm going to maybe do anintroduction because this is all
about the patients.
So, if you are a patient thathas experienced, you know and
this is not a bash, bash, bash,this is a lot I want somebody to
know my story.
I want to tell my story.
That's what this is about.
So, if you are a patient thathas a story to tell, if you know
(02:15):
a patient that has a story totell, if you're in the patient
community, the goal here is tomake sure that we get all our
patients to be proactive.
We don't need you no longer dowe need you to be retroactive,
or we need you to be proactive,taking care of your business
(02:36):
before things happen, so you canstop emergency accidents or
emergencies from happening.
So what is this story?
What is this podcast about?
It's about you, you, you, youand your loved ones.
Okay, today is May 1st.
As I stated, it's actuallyLupus Awareness Month.
(02:56):
Please take a listen to ourfirst honored guest, mrs
Jacqueline, because I got to getthat, mrs right.
There's a reason for that.
Speaker 2 (03:07):
I'm not going to say a word, I'm going to let you go
and I'm going to correct youafterward.
Speaker 1 (03:12):
And she's going to tell you about her patient
experience as a lupus warriorand a lupus survivor.
And then she's going to tellyou how she, instead of her
taking that time glass that shewas given when she received that
diagnosis and said, well, it'sme, she's like, uh-uh, they
showed up at the wrong body andshe took control of her life and
(03:34):
the things that she did.
To encourage you as a patientthat might be saying, oh my god,
they told me I got cancer.
Oh my god, they told me I haddiabetes.
I'm gonna die.
No, you're not.
You're gonna do very similar towhat Jacqueline did and you're
gonna take it by its horns andyou're like this is me and this
is what we're gonna do.
So on to you, Miss Jacqueline,could you please introduce
(03:55):
yourself your story and what itis that you offer to the patient
community to help them getbetter?
Speaker 2 (04:02):
Hello MetaHealth world.
I am Jacqueline Cox, also knownas Listen Linda, and I am a
lupus warrior.
I have lived with SLE, which issystemic lupus.
Eros Girl, it started with an E.
I wish I could tell you youwhat to say, but they give you
(04:24):
this long word that you cannotpronounce.
But in so many words, sle.
And it's not just a disease,it's a storm that never fully
passes.
Okay, um, it's flares withoutwarning, attack, it attacks your
organs and it drains yourenergy, but still I rise, like
(04:44):
Maya Angelou, right, there aredays I smile through joint pain,
days I parent, serve and lead,while my body, it just wages war
against itself.
And you wouldn't know it bylooking at me.
But I've had to fight foranswers, for treatment and for
understanding, because lupus isoften invisible.
(05:07):
But I am not Right.
So I speak not just for everywarrior who's ever been told you
don't look sick.
You know, I get that a lot.
You don't look sick.
You don't look like what you'regoing through For those who've
been misdiagnosed, dismissed andmade to feel like your pain
(05:27):
doesn't matter.
So this May, during LucasAwareness Month, I raised my
voice to say we are resilient,we are powerful and we are still
here and together we arefighting for a cure, for equity
and care and for the strength tokeep going, one day at a time.
(05:48):
So me what I do for Lupus andfor SLE and Fibromyalgia and all
different types of autoimmunediseases, I'm not just an
advocate, but I'm actually anambassador for Walk for Lupus
Now.
I'm actually an ambassador forWalk for Lupus Now and the
(06:08):
director and the founder of Walkfor Lupus Now, joan Pendleton
she actually contacted me acouple of years ago.
I started out just as anadvocate and somebody with my
own team and I walked, but Igained so much traction and
donations towards theorganization, she asked me to
become an ambassador.
So I am now an ambassador forWalk for Lupus now and we get
(06:29):
together every September righthere in Chicago, but it is
nationwide.
So we meet up every Septemberand we actually meet downtown
Chicago in different parks andwe will actually walk for lupus
and take donations and stufflike that.
So it's it's not a long walkbecause you know our joints and
(06:52):
stuff, we be aching and we behurting, so it's not miles, it's
literally like a half a milethat you have to walk and it's
really cool.
And I took my kids last, uh, acouple years ago, uh, sandra,
and it was really, really areally a good time.
So they had music, they hadface painting, they had
different vendors out there.
Lupus the Walk for Lupus nowactually also has a sorority, so
(07:17):
like you can join the sororityand it's just real cool.
So not saying I'm happy I gotLupus, I'm not happy I deal with
it every day, but me getting up, dealing with it every day and
going through it and taking mymeds, that's most important.
Because I used to be verystubborn with taking my meds.
Sandra and I did not want to doit and I found myself like
(07:39):
always in pain, always hurting.
My mood changed my memory isgetting lost all the time and it
was because I was neglecting myhealth, because I just refused
to accept the diagnosis.
But 10 years later afteraccepting it, I'm still here.
When I wasn't taking my meds itwas about three years ago I went
(08:00):
to go see my doctor and Iwasn't taking my meds and she
told me she she didn't reallyhave good bedside manner.
She just basically told me ifyou keep this up.
You're gonna die in threemonths, she said.
Even if you start back on yourmeds right now, I don't think
that you're gonna live pastthree months, whatever three
years ago.
So I'm still here, I am takingmy meds, I'm doing what I'm
(08:21):
supposed to do for myself and II'm not.
I don't feel sorry for myself.
I feel like God takes methrough things.
You know, I say this all thetime.
It's a blessing and a lessonand God takes me through things
and gives us platforms like oursso we can help people.
So I'm glad to be here.
I'm glad you invited me here.
(08:41):
Ask me some questions, I am allyours here.
Speaker 1 (08:47):
I'm glad you invited me here, ask me some questions.
I am all yours.
I do want to ask you a questionand I'm so thankful that you
didn't listen to the doctor andso often our patients hear that
you're not going to live.
It's a scare tactic a lot oftimes.
Sometimes it's the truth, but alot of times it's a scare
tactic.
And I know me even being who Iam and dealing with the health
conditions that I have to dealwith, I tell my doctor they know
(09:09):
me by now.
We just can't tell Sandra that,to tell me that I'm not going
to make it, I'm not going tolive.
You know, I've heard that storynumerous times because of things
that I've been doing as far asbeing a diabetic, not taking my
medicine, or I was so busy doingschool and doing life that I
wasn't taking care of me, so mypatient experience actually
(09:31):
suffered.
But what I'd like to focus inon and so I'm so thankful that
you didn't listen it was like,okay, once again you got the
wrong person right, I mean, andit's sad that we have to keep
repeating that and it's sad thatour doctors a lot of times feel
like, okay, the only way thatI'm going to get through to this
patient is by putting a scaretactic on it, not by educating,
(09:53):
and they'll put in our notesthat we're not compliant.
It's not that we're notcompliant, we just haven't been
educated.
We just don't feel like we'reempowered and we just don't feel
like we are or should beengaged in our own health care.
And sadly, that's not the case,which is why we started since,
which is why we started thepodcast, right?
(10:15):
But what I'm interested inknowing and it always amazes me,
how patients that don't look atthe bottle and say, well, the
hourglass, and say, hey, it'shalf full, it's half empty, I'm
just gonna die, you know, I'mjust gonna sit here and I'm
literally I'm just gonna justpass away, I'm just gonna like
left, let life happen is thatyou didn't do that.
(10:36):
No, ma'am you, can you tell usmore about what you did as far
as saying not today, nottomorrow, not next week?
Speaker 2 (10:48):
what you did as far as saying not today, not
tomorrow, not next week, likewhat business go ahead?
Um, lupus is like a shape shift.
Okay, so one day I'm fine, youknow I'm okay, I can get up, I
can move around, right.
But other days, whether I takethe medicine or not, I'm
exhausted, I'm in pain, I'm verysensitive to light, um, and I'm
always swollen, right, um.
It affects my joints, my skinand even my internal organs.
(11:12):
But I still like, I get up, Ispeak, I lead, I love, I mother
and I advocate.
Um.
So you know, I've had peopletell me you too strong to be
sick or you don't look like yougot lupus.
But I learned like strengthdoesn't always look like muscles
or metals.
Sometimes it looks like gettingout of bed when your body aches
(11:36):
.
Sometimes it looks like smilingthrough fatigue or still
showing up when your body saysno, right, so I, so I'm not
alone.
It's millions of lupus warriors,especially women of color.
We go unseen and we go unheard.
We're misdiagnosed, weunder-researched and we let out
(11:58):
of conversations about care.
But not no more, not no more.
That's why I speak up, that'swhy I tell my story, not for
sympathy but for solidarity.
You know what I'm saying Liketo remind somebody.
You are not weak, you are notcrazy, you're not making it up.
It's not just you're tired,it's not just you got fatigue.
(12:19):
We live in with the diseasethat demands too much, and still
we stand and talk.
So to every lupus warrior outthere, this is for you.
Like you're brave, you'rebrilliant.
Warrior out there, this is foryou.
Like you're brave, you'rebrilliant.
You're not defined by yourdiagnosis.
(12:40):
We may be in, but we don'tbreak.
We are not victims, we arevictors.
We are not invisible, we areundeniable.
Okay, I get up every single day.
It's hard, sandra.
It's hard because people expectso much out of me.
You know, I'm a one-woman show.
I'm running a whole brand andmarketing firm and I don't have
(13:02):
an assistant.
My virtual assistant is ChatGPT.
They help me with my documents,they help me with organization,
with my calendar, because atthe end of the day, it's just me
and I have to do that.
I have to do my thing.
I write, I produce, I.
(13:22):
I have clients.
I have a list of maybe 12clients that I'm working with
right now.
I'm doing anthologies when I'mworking with over 30 women, so
that's 30 more personalities.
And then I got my kids.
I got my husband, my husband Igot myself, and it's a lot.
It's a lot, but to God be theglory, I'm glad people look at
(13:42):
me and say you don't look likewhat you've been through.
That's okay for me.
I'm okay with that, sandra.
But people really need tounderstand that just because
people may not have a disabilityor a disease that you can see,
it does not mean that they arenot struggling the same, if not
(14:05):
more, because a pinch to you maynot hurt, right, sandra?
But a pinch to me may be theworst pain I've ever felt in my
life.
So a lot of times people whohave illnesses and disabilities
and deformities that you can see, they like oh, that's all she
going through, oh, that ain'tnothing, that ain't nothing, but
(14:26):
it's something.
Though just because you can'tsee it.
You know I have renalinsufficiency because of lupus.
I have lupus because offibromyalgia.
I have fibromyalgia because ofmy thyroid cancer.
So I'm living with threedifferent autoimmune diseases
and the thyroid cancer is likeoh, that cancer, it ain't bad
(14:47):
because it's not fatal.
What do you mean?
Cancer ain't bad.
Like Sandra, help me out.
Like cancer ain't that's.
You know how many times peopletell me that oh, you got the
good cancer.
You got the one that you don'tdie.
How I'm living with it everyday.
What you mean?
The good cancer?
So you know we have to bemindful of how we treat people
(15:10):
with autoimmune system diseases.
Uh, before I even knew I hadlupus, I always slept, I was
always tired.
I can never keep a job.
I was always burnt out, I wasalways in pain and I always was
like man.
I wonder if this is because Iyou know, I just had a baby.
You know, that was my.
I didn't understand what wasgoing on with my body until I
(15:33):
found out I had thyroid cancerand with that it was just a ball
of different things, like afireball of different things
that was happening inside of mybody.
Because of that, and lupus justso happened to be one of them,
I've been dealing with it nowfor 10 years.
Speaker 1 (15:49):
And you know what.
You bring up two very goodpoints.
And, as it is, none of us knowswhat somebody else is going
through, absolutely positively,we don't know.
How much does it cost for youto be kind to someone at all
times?
What is the cost to you to bekind to that person?
What is the cost to you to, youknow, instead of saying, oh,
(16:12):
they just, you know, they justgot a bad attitude or they're
just like a hot mess and I don'twant to deal with them, what
does it cost you to sit back andsay I wonder what they're going
through?
And instead of instead ofgetting so you know, torn out
because maybe a person is havinga bad day and you just don't
know it, ask, say, hey, youhaving a bad day, because that's
(16:34):
just not like you, so that theycan actually let you know.
You know, I'm sorry, but I'mgoing through something right
now.
You, on the other hand, stepback and say, okay, I'm gonna
give you some time, let me knowwhen you're feeling a little bit
better.
But to push the issue and thepushing patient that's suffering
from comorbidities, meaningthere's more than one, and
usually, when you have onehealth condition, they're
(16:57):
usually gonna diagnose you withsomething else sooner or later.
Right?
What does it cost for you to benice to everybody?
It doesn't cost you a thing.
But there's another point thatyou bring up that I want you to
talk about more, because this isabout patients telling their
story and making sure that weall know.
(17:19):
Right, we all know, we allaware that you don't have to
stop at being a patient.
Before I do go through thatpoint, I do want to let everyone
know.
If you're interested in being aguest on this show, if you have
a story to tell, please reachout to me and say hey, sandra,
how does it work?
How can I be on your show?
(17:39):
If you know someone that wantsto tell a story, their patient
experience?
Come on, people, we got to leteach other know.
We got to let you know thatwe're there for you and that the
support is there for you.
So let us know and reach out tome and say hey, sandra, I would
love to be on your show.
I got my story to tell.
And that's going to bring me tomy second point.
(17:59):
With you is this you justbrought up a very important part
.
We all have a story to tell.
You have a story to tell.
I have a story to tell.
Everyone that's listening tothis podcast has a story to tell
.
Please consider telling yourstories so that others can get
(18:20):
healed and get help by what youtell.
If you keep it to yourself, whois it helping them?
Who is it hurting?
I just said that it doesn'tcost you anything to be kind.
It takes you a few minutes toactually sit down and write your
story out and share your story.
Your story deserves to be told,so can you tell us what steps
(18:42):
you can help them with as far asbeing able to tell their story?
Speaker 2 (18:46):
I just want to say thank you for saying that,
because dealing with lupus isvery hard and it's not just hard
just having lupus, but a lot ofdifferent, you know.
A ball of different things isgoing on and I get emotional
about it because I do have moodswings where I'm not my best and
(19:12):
people it's like people waitfor you to have those moments so
they can write you off or saythey're not going to deal with
you, no more.
But they don't understand thatit's a lot that goes on with it
and I'm so glad that you, thatyou got this platform where we
(19:33):
can really speak about it.
You know, because I have a ballof emotions all the time with
dealing with this and I try tobe as cordial as I can.
But the moment that I'm nothaving a great day or something
like that, just like Peter, youknow Peter didn't have a great
day.
He was upset that, just likepeter, you know peter didn't
(19:54):
have a great day.
He was upset.
He, he had just, you know,seeing his friend getting, you
know, sacrifice and stuff likethat, and he was scared for his
life and he made a bad decision,you know, but he was, he was
just having a bad day.
He wasn't a judas, you know.
He went back, he apologized, hegot him back right with his
friend.
A lot of times people will takepeter's and make them out to be
judas, you know, and it's notfair, especially with people
(20:18):
dealing with lupus, peopledealing with fibromyalgia,
people dealing with thyroiddisease and thyroid cancer.
It's a lot of things that wedeal with silently, that people,
and then, a lot of time, thepeople who wrote me off was
people who knew what I wasdealing with.
So it was like they can't waitfor you to mess up so they can
have a reason to write you offbecause they really they done
(20:41):
with you anyway.
Right, and that's how we weneed to use discernment to
really go to god and reallyfigure out who is really for us.
Because if they quit to writeyou off because you having a bad
day, or you having a lupusflare, or you in pain and you
don't feel like being bothered,or you having brain cloud and
you can't really functioncorrectly, or you overstimulated
(21:03):
, then those are not the peoplefor you.
And if you have a story and youwant to tell your story and you
want to be able to get it out Iam the best at it.
15 time bestseller.
Turn your pain into paper.
That's my, that's my strategy.
Sandra, you ask me what mystrategy?
Turn your pain into paper, putit on paper, box it up and sell
(21:27):
it.
You know, and that's and I'mgood.
I am the best at it.
If I may toot my own horn, I'mthe best at it.
Everything that I go through,everything that I deal with, I
write about.
I write about it and even ifI'm, if I don't make a dollar
off of it, I know that I got itout and I did it in a healthy
way.
So if you want to tell yourstory you have a story to tell
(21:50):
you can reach out to me.
I can help you get through thatprocess.
If you want to publish your book, you can reach out to a friend
of mine.
Her name is Laquita Parks.
She is the CEO of PayProVPublishing.
She can help you publish yourstory.
But if you need just one-on-onetime and you don't know how to
get it out, what strategies touse, you can always contact me.
(22:19):
You can find me on Facebook atthe name below Jacqueline Cox,
right there.
You can send me a directmessage on Facebook.
That's the best way to get incontact with me, not through my
website, not through my email,but I am on Facebook because
that's where my job is, so youcan find me on Facebook, inbox
me directly and say hey, I wantme directly.
Speaker 1 (22:31):
And say, hey, I want to tell my story, I want to tell
my story you know, and I thankyou for that, and I do want to
let people know.
If you're listening and youhave any questions or you have
any comments that you want toadd, please go ahead and do so,
but I want you to know, all ofyou that are looking at this
video, not just listening.
(22:52):
If you're listening, I want youto turn the video on, I want
you to turn towards the videoand I want you to see the tears.
And that's how you know thatthis platform is needed, because
Jackie's not the only onethat's sitting somewhere at a
table.
You know days that she'ssitting at a table where she's
just crying or she's just likewell, how do I get through at a
(23:12):
table.
You know days that she'ssitting at a table where she's
just crying or she's just likehow do I get through this?
And you know her prayers aregoing out.
She's not the only one, so thisis a safe space.
So, as I stated earlier when westarted, you know I've been
getting on my soapbox and sayingwe need to be invited to the
table and I was fortunate enough, through friends of mine, to
(23:33):
actually put my name out in theatmosphere to be able to be a
patient sitting at the table,but guess what?
Now, that's not good enough forme.
Now I'm thinking we need tohave our own table and let
others look at us and see whatwe, as patients, have to offer.
We need to have our own table,we need to have a safe spot
(23:57):
where we're not being judged byanyone because we all know what
we're going through, but thatwe're actually able to come
together and talk, come togetherand find out how did you push
past it?
What did you do?
Maybe for you it's not being apublisher or it's not being, you
know, an author.
Maybe for you it's gardening.
(24:17):
Maybe for you it's, you know,going for walks or walking
working out.
Or you know, going to Biblestudy, but you don't have a
church home or you're not reallysure where you can go, where
you can get that spirituality.
Or and it doesn't even have tobe church Maybe you are of a
different religion, but you wantto get that spirituality piece
because it's missing out of yourlife, because, as I know
(24:42):
firsthand spirituality, if youhave a good spirituality piece
in you and within you, thatspirituality piece, it helps you
blow past many challenges thatyou go through, because you know
where to go to get your help.
You know where to go to getthat internal help.
So this is a safe spot for you.
(25:05):
This is not a spot where you'regoing to be judged, where
you're going to be oh, you'renoncompliant.
Oh, you're not listening,you're a bad patient.
Oh, you're just trying to causetrouble.
That's not what this is.
This is a safe spot where youcan come, you can share your
story or, once again, thosestories of other people who have
(25:25):
been impacted for some type ofhealth challenge, right, and say
, hey, look, this is what'sgoing on.
And perhaps you're like jackiewho, early on three years ago
she stated, was told by a doctorthat you won't make it.
You're threatened by what thedoctor tells you.
There are places that you cango to where you could report
(25:51):
those types of incidents.
Speaker 2 (25:52):
oh, I definitely right right to the, to the um,
the, the supervisor of all themedical staff, and that person
was released and they did giveme their sincerest apologies
because it was not great badside math and that's what
patient was doing, that todiscourage me because the devil
would try to creep in.
And you know I did.
I was very upset about it atfirst but I was like I don't
(26:15):
accept that, I don't accept that.
I bind that in the pit of helland once it came, you know, um,
return back to send them.
I don't accept anything thatthat, that that that causes
confusion or chaos in my life.
You, because God is not theauthor of confusion.
Speaker 1 (26:34):
And you are so true about that and I'm thankful to
know that you reported it.
But this is not about snitchingon the doctor.
This is about, as a patientdeserve the best, the most
optimal healthcare I can get.
So if a doctor is threateningyou, you need to know this.
You need to be educated on whatsteps you could take so that
(26:55):
that doesn't happen to you or toanybody else.
Because guess what If ithappened to you when you leave
the office and you don't saynothing, guess what's going to
happen to the next patient thatwalks into that office?
Same thing, same thing.
It's just going to keeprepeating itself over and over
and over again.
We have to stop it.
You know, plan patients go tothe doctor because they don't
(27:17):
have anybody to go with them.
Tuning into this podcast letsyou know that, hey, there's
people that I can call and maybethey can't physically go with
me to the doctor's office, but Ican take what they're telling
me to the doctor's office andknow how to get that optimal
healthcare, push that optimalhealthcare.
We're all about collaboratingwith our providers, but we want
(27:38):
them to collaborate with us aswell, and if we don't come to
the table with a straight like.
This is the needs that we haveand this is the wants that we
have.
We're going to keep gettingpushed into things that we don't
want to do, and none of us, aspatients, deserves that None of
us.
Mrs Jacqueline Cox, before we gofor the day, I do want to ask
(28:00):
you what are your final pointsand tips that you want to give
to other patients who may begoing through the same things,
similar things as you are, andwho do you give credit to for
helping you?
Because I know you've got asupport network somewhere,
because all of us need one.
Who do you support?
Who do you say supports you asyou go through the challenges of
(28:23):
being the best patient that youcan possibly be?
Speaker 2 (28:31):
The tip that I would give them is to listen to your
body, even when others don't.
Rest is not weakness, rest is astrategy.
Okay, track your flares.
Use a system, journal or app tolog your fatigue, your food
triggers and your stress level,because patterns reveal power.
(28:52):
Right, I wrote these down.
So I'm looking at because Iwrote it down.
Um, speak up at appointments.
Like sandra said, be your ownadvocate.
Bring a list, ask questions andpush for answers.
Push for answers.
Don't let them dismiss you orwrite you off.
Know your numbers, keep a.
Keep a file of your labs, yourmeds and your diagnosis, because
(29:16):
lupus is complex, so you haveto stay informed.
Okay, so make sure you got yourmy chart up to date.
You got it where you can.
Mine is on speed dial.
I can pull up my chart so fastand pull up every single
appointment, every single aftersummary.
I read them all.
I don't just toss the papers tothe side.
(29:36):
I read my after summaries, Iread my aftercare instructions,
just know what's going on withyou and build you a lupus circle
.
Okay, you need people who getit.
Okay, whether it's supportgroups, therapists or people,
fellow warriors online, becausea lot of times, people will love
you and they will support you,but they will not understand
(29:57):
what you're going through, andso you're going to need a circle
of people who understand whatyou're going through.
Ok, it is a Facebook group thatI'm in called Walk for Lupus
Now.
You can join the Walk for LupusNow group.
It is a great support group.
Don't skip your mental health.
Okay, lupus attacks your body,but it also weighs on your mind.
(30:22):
So therapy, prayer, journaling,like I said, write it out, do
what heals you and protect yourpeace like medicine.
Your peace is your medicine.
So stress is a flair's bestfriend.
If you under stress, you'regoing to wake up with a pumpkin
face and a bunch of rashes.
(30:42):
Because I go through it a lot,I know I need to take my own
advice with this Guard yourenvironment.
Guard your environment.
Say no unapologetically andcenter your joy.
Make your joy your main pointin your life.
Whatever it is that brings youjoy I don't know if it's cooking
, I don't know if it's playingwith your kids listening to
(31:04):
music, but whatever it is thatbrings you joy, center that.
Center your mind, your body,your spirit around that and stay
covered.
Mind your body, your spiritaround that and stay covered.
Know your insurance, patientassistance programs that you can
make yourself available to, andMedicaid updates.
Health policy changes canaffect your care.
(31:24):
Trust me, I went through BlueCross Blue Shield Medicaid to TR
tricare and tricare was myprimary right and I had blue
cross blue shield medicaid wheretricare tried to say that I had
blue cross blue shield under anemployer which I'm my own
employees.
I don't even know how theyfigured that, but they were able
(31:47):
to snatch away all the paymentsthat they had made towards my
care for the past four years.
So I had to go back and do anOHI form for TRICARE and prove
to them that I had Medicaid andthey had to go back and
reimburse all those people.
So don't get caught up and notknow your insurance and what
you're covered with.
(32:08):
And know that having a, a stateissued medicaid does not mean
that they are your primary, theyare your secondary.
Your primary is tricare,whoever it is that your employer
, don't let them cheat you outof paying your medicaid.
So, uh, your for your medicalum coverage.
So always, always, always um.
(32:29):
Stay updated with that.
So, for as far as likeacknowledging people who support
me, my family, thank you forloving me on my worst days, even
when I had nothing left to give.
Lord, your presence is my power.
Okay, my children, you are thereason I fight.
Your love reminds me daily.
(32:50):
My pain is my purpose.
Um, and my purpose is greaterthan my pain to my husband.
He carried, he carried awaywith grace girl, he really does
um.
Every hospital visit, everylate night, every I got you.
He is my anchor.
He literally just drove me tothe er that they drugged me
(33:11):
there with fear and tremblingfor this ear infections that I
have.
So you know, my husband is thebest To the Lupus Foundation,
walk for Lupus Now, and all thelocal organizations for
advocating funding research andgiving us a voice.
My sister's in the fight,whether I've met you online or
(33:31):
in person, your resilience, itstrengthens my resilience and we
are a tribe, a testimony and amovement and last, but certainly
will never be really the firstto last and by everything, to
Lord Jesus.
Lord, thank you, god holding mewhen I couldn't hold myself,
(33:52):
turning my scars into my storyand my pain into purpose.
So those are my support systemsand I thank you all from the
bottom of my heart.
And please, please, please,listen to the tip that I gave
you, that Sondra gave you,because we are really here to
help.
This is a wonderful, wonderfulplatform that you have.
(34:12):
Sandra, I'm so, so blessed tobe your first person in your new
season.
She picked me.
She didn't pick y'all, you know.
I had to throw that in there.
Speaker 1 (34:22):
You can come after me though, it's okay you know, and
with that being said, before weend the show for today, what I
do want to say is thank you somuch, because I know once you
were on your way in from theemergency room and you was like
I'm not going to let this stopme, I am going to do this.
Speaker 2 (34:39):
The devil tried it, but I'll repeat that.
Speaker 1 (34:42):
For the lupus warriors out there.
Continue holding your head up.
Continue fighting that fightwhen you feel like you want to
give up.
Don't give up.
You now have a platform.
You now have someone that youcan actually turn to and say hey
, Sandra, how do I get throughthis?
Or this is what happened sothat you can get some resource
(35:03):
help from the choms many helpsFoundation.
We stand at the ready to beable to help you and assist you
in making sure that you get thebest optimal healthcare that you
can possibly get.
And remember, Sandra L speaksand she says this it costs you
nothing to be kind.
It really doesn't.
(35:24):
It's free.
So use your kindness to helpsomeone along the way, because
you never know who you might behelping.
So with that, I'm going to bidyou all adieu and I hope that
you stay tuned for our nextupcoming show that we'll have
another patient sharing theirpatient experience.
(35:47):
Thank you so much for tuning in.
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