Crafting Through Illness

Episode Transcript

Speaker 1 (00:03):
Good day everyone, and thank you so much for
joining in another discussionspeaking with Sandra L, the
Patient Experience.
As always, we welcome yourthoughts, we welcome your
comments into this conversationand we thank you so very much
for taking some time out of yourbusy day, no matter whether

(00:23):
you're watching this with uslive or you're tuning in at a
later point.
We appreciate you because youknow what.
You could have seen us and sayyou know what?
I don't know what that is, butI'm going to keep it moving, and
so I am very, very thankful,and Charms Many Helps Foundation
team is very, very thankfulthat you're spending some time

(00:43):
taking some time in to listen tothis very important discussion
where we talk about all thingspatient experience.
I do want to put thisdisclaimer out here this is not
a bash the doctor syndrome.
It's not a bash the doctorsession.
It's a.
We want to get along with ourdoctors and we want them to know

(01:04):
from our standpoint, frompatient standpoint.
We want them to know what it isthat a good patient experience
for us is and what isn't.
Likewise, if you're a providerand you want to share your
thoughts on you know there'ssome things that patients can do
as well If they want thatpatient experience to be better.

(01:25):
We want to hear from you.
We would love to have you onthe show.
I'm speaking to the patientcommunity and sharing with us
your thoughts on OK, well,you're asking for a good patient
experience, but yet you come inhere ill prepared, you don't
have no notes, you don't havenothing with you.
You know, really you knowYou're leaving us in a limbo and

(01:46):
what we need for you torecognize is that right now,
with the system the way it is,as a business instead of
healthcare, we can't help you.
Unless you come to us withnotes written or having things
together for us, we can't helpyou.
We're stuck.
So you might say well, doctor,she's rushing me out of this

(02:07):
office or he's rushing me out ofthe office.
But you have to understand ourbusiness is tied to a contract.
That contract says how muchtime we can spend with you.
For most doctors Not alldoctors are like that, but for
most doctors are tied to acontract and they have to go by
that contract.
Because guess what people?
We don't work because we wantto work.

(02:29):
We work because we have to work.
So, providers and patients,both on their ends we do what we
have to do and we shouldevening.
Our special guest is a dynamicwoman.
She has taken her talents andher gift.

(02:55):
When the doctor told her youknow what, this is your
diagnosis and this is what'sgoing wrong with you, after so
many years of going here, thereand everywhere trying to get the
help for her to get to help, itwas like, okay, here's what's
wrong with you.
And she was like okay, youshowed up at the wrong body, I'm
not going anywhere and this iswhat I'm going to do to fight.

(03:18):
So she's going to show you somelovely pieces of this is what?
When my mind sets in and I startto feel bad, these are some of
the things that I work on tohelp uplift my spirit so that,
if you're a patient or you knowsomeone that is a patient, you
can talk to them and say hey,listen, here's some things that
you can do to help you to have areally good patient experience.

(03:42):
So, without further ado, I'mgoing to let her go ahead and
introduce herself.
Jewel, please go ahead andintroduce yourself and tell
everyone who you are and whatyou do.
A general overview, because ofcourse, I'm going to get into a
deeper overview.
But if you could tell us whoyou are and what you do.

Speaker 2 (04:01):
I'd appreciate it and what you do.
I'd appreciate it.
Hi, my name is Jewel Dukes.
I am, how old am I?
39.
39 years old.
I live in Atlanta, georgia, andI am a patient advocate.
Slash crafter.
Oh, I, um, yeah, that's that's,that's me.

Speaker 1 (04:30):
That's what she's saying now because she's being
modest.
She's really being modest, andI say that not so that I can
tell her story, but so that Ican allow her to tell her story,
and everyone that's listeningor watching is going to be like
she do so much more than patientadvocacy and crafting.
Is she kidding me?
So I'm going to have to draw itout of her, which I very often

(04:51):
have to do.
I have some dynamic patientsthat come on and they're talking
and I'm like, okay, well, letus really know what you do.
You're doing so much, and she'sone of them.
But I so appreciate her andwe've grown to be really close
associates.
So I certainly enjoy speakingto her and I certainly enjoy

(05:13):
seeing her.
Every time she puts somethingon Facebook to show what she's
doing, I'm like you know whatthat girl got the brain?
I mean, the crafts that shecomes up with are dynamic.
She also does our T-shirts forour Many Hot Charms, many Helps
Foundation.
She does design and do ourT-shirts for us, and so for that

(05:34):
I'm very, very thankful.
Jewel, my first question to youis can you take us back to the
moment when you found out aboutyour diagnosis and, within that
moment, what were you feelingand how did you, how did
crafting enter into that phase?

Speaker 2 (05:51):
Okay, so I guess I'll go back to who I am.
I am a mother of two children,a wife of 14 years this year,
and yeah, so my diagnosis, myoriginal diagnosis well, my

(06:12):
major diagnosis, is Cushing'sdisease, which is a rare disease
.
It is hypercortisolism, whichmeans my body was making too
much cortisol.
Cortisol is a hormone you needto live, but it's also a hormone
that, in excess, can kill youor, you know, deteriorate your

(06:34):
body and your bones andeverything.
But that moment that I got mydiagnosis, it was just pure fear
.
Fear of being a Black woman inthe medical world, fear of not

(07:05):
being taken seriously, fear ofnot getting help, and those were
the things that first wentthrough my mind.
And then I it's so crazybecause most of my information
came from me getting online onFacebook groups.
I was able to find and meetpeople that helped me.
They gave me advice when mydoctor didn't know how to treat
me.
They gave me advice when mydoctor didn't know how to treat

(07:28):
me, so I could go to my doctorand say, hey, I'm having this
problem, I need you to do this,and yeah, so that's kind of how
my diagnosis started.
That was in 2021.
That was in August of 2021.

(08:01):
In October of 2021, I hadpituitary surgery, which is kind
of like brain surgery to removea tumor that was on my
pituitary gland that was causingmy body to overproduce cortisol
.
So crafting entered when I hadnothing else.
I had lost all hope After I hadmy surgery.
I had no God forbid say it willto live, so I didn't have

(08:21):
anything.
I had my children and my familyand that was it, and so I
created a hobby.
I've always been crafty orartsy, but I was always on the
go because my body was geeked upon cortisol all the time.
So I began crafting and myfirst thing that I made was

(08:57):
T-shirts for my daughter's trackteam for her high school, and
it just grew from there and hercoach was like, well, can you
make this?
And I'm like I don't know, butI'll figure it out.
And that's kind of how I grewinto being a crafter and owning

(09:18):
the business, and which thismonth actually makes three years
that I have actually been inbusiness.
So that's nice.

Speaker 1 (09:29):
Happy anniversary.
See, I learned something newtoday, which is a good thing,
because every day when I wake upI hope to learn something new,
especially if it's a patientthat I'm speaking with and I've
helped.
And they're like Sandra, youknow what?
Thanks to you I got this help.
Or you know, I was able to openup my mouth and when the doctor
said this, I said no, hold onfor a second and I was able to

(09:51):
talk.
So every day I look for thatgold line that tells me, sandra,
what you're doing is neededright, even if it's not for
everybody, somebody out thereneeds that information, that
resource that you have, thatyou're giving them, that you or
your team is coming up andsaying, hey, this is how this
person could be helped.

(10:11):
I got to grab a hold ofsomething to help me push past
this.
It's a big, you know, it's abig plus for you and it's a big
plus for me, because I remembertalking to you a couple of years

(10:34):
ago when you were having anissue and you was like I really
don't know what to do, and youknow, and us talking through it
got you through it and I'm soglad you didn't get through it
and say, okay, well, I'm done.
You got through it and say,okay, well, how can I do
something on an everyday basisto make sure that my patient
experience, whether I'm at thedoctors or home, is a great

(10:55):
patient experience, right?
So I'm grateful and I'm very,very happy to know that you made
three years and you didn't quitand didn't say you know what
glass is drawing closer to beingout?
You know, you like, took thathourglass and you flipped it and
made it come.
You know, no, I'm living, I'mnot dying I'm.

Speaker 2 (11:16):
I don't want to make it sound like it was easy.
It was not I have days where Ican't get out of bed and I post
those things.
I am very honest about what I'mgoing through and what my
situation is, because I see alot of people who out here and
they're not honest.
And then when I'm going throughit I'm like well, I'm over here

(11:36):
hurting, but you happy.
But then when you turn around.
They're like, oh well, yeah, Ido have this issue and I do have
this issue.
So I want people to see thereal real behind what goes on
with the chronically illcommunity.
Because it is not easy, somedays I lay in my bed and I'm

(11:56):
like, well, I can't get up today, I can't do it, and that's okay
and I give myself grace onthose days.
So it has not been an easythree years.

Speaker 1 (12:08):
Like I said, I know it hasn't because I've watched
you over those three years andI've seen you going through the
pain and you're right.
For anyone that's listeningthat's like, well, I'm not a
critically ill patient and thisdoesn't amount to me.
Once again, what I want tobring to everyone's attention is

(12:29):
that illnesses and sicknesses,they don't ask for our
permission for them to show upin our body.
They show up when they want toshow up, and it doesn't make a
difference whether you're 25,whether you're 35, on down the
line, even our babies, who arepediatric, critically,
chronically ill patients.

(12:50):
Illness doesn't ask for yourpermission to show up.
It just shows up.
And when it shows up, you haveto have some type of hope and
someone seeing you suffering,but then also seeing you doing
well, to know that, no, don'tgive up hope.
You know you got to keepfighting for what you know that
you want in your life.

(13:11):
So thank you for that.
I do want to ask you, though sowhen did you make the decision?
And you're like, okay, well,I'm personally, I'm doing this
for my daughter's track team andfor my family members, but now
I want to branch out and I wantto monetize what it is that I do
so that I can have someadditional assistance paying for

(13:31):
my medicines or paying to go.
Maybe I want to go to aspecialist and my insurance is
saying, well, we'll cover 80 or70%, but I need a hundred
percent.
So let me monetize this so thatI can have some additional
income coming in.
What made you decide and I'm sothank you for deciding that you

(13:52):
know what I have to honestlysay I don't think I made that
decision.

Speaker 2 (13:58):
I think the decision was made for me.
Because people said oh, you didthat, oh, I need you to do this,
you did that, oh, I need you todo it.
So we kind of snowballed into Imight as well create a business
.
I might as well, you know, andfor a long time I worked part

(14:19):
time and also did my business.
But when I tell you it'ssomething that I love, it's
something close to my heart, andI want to make things that
people can enjoy.
I want to make things that makepeople smile.
I want to make things that givesomebody hope, whether it's
something for awareness orwhether it's just let me tell

(14:44):
you, I do just about everything.
Okay, yes, you do.
I have not done that.
I love doing it all, and itjust makes me happy to see other
people happy.
It makes me happy to see thejoy that people get out of the
things that I can create with myhands.

Speaker 1 (15:07):
Now, what I do want to ask you is this so you've
done well with your crafting andwe're going to show a few
pieces before we leave for thisevening or before we leave for
this discussion.
You've done crafting, done itpersonally, you've done it.
You know, as far asmonetization, you've been able
to monetize off of it and youhave a rare health condition

(15:33):
which, once again, you statedearlier.
You had to learn how to setboundaries and say no and no is
a full sentence and say nowithout any explanation, because
we know that you have.
A person knows that you have anillness, right, what should be
happening is they should be, andthey know that there are some

(15:53):
things that they need.
Ok, well, she might be notgoing through some stuff, and so
for me to actually get thisback from her in time, I need to
give it to her in time so shecan get it back, so in those
days that she can feel good, shecan continue to work.
So how has that illness or thathealth condition I don't want
to say illness how has thathealth condition, how has it

(16:15):
impacted the way you, creatively, are able to keep functioning
in that crafting atmosphere?

Speaker 2 (16:22):
Yeah, so I would say, in these past three years I may
have been hospitalized aboutfour times and each time I felt
like I was on the mend.
I'm going up and then now I'mback down.
I'm going up and now I'm backdown.

(16:44):
So, whereas it would take anormal person maybe three or
four days to do something, well,I have to take into account
that I may not be able to getout of my bed for a day.
I may be tired, I may be weak,I may have to do something for
my kids and once I go outsideand I come back in, I'm done for

(17:08):
the day.
I need a nap, I need a wholerecharge, I need a Coca-Cola, I
need everything to get back intothe swing of things.
So that's the way it affects mybusiness.
I have to be mindful of thetimeframe that I have to do
things.
So if somebody comes to me andsay, hey, jewel, I have this

(17:28):
order and I need it reallyquickly, I need to be able to
identify how do I feel?
Do I feel like I can actuallyphysically complete this order
in the amount of time that theyneed it?
Physically complete this orderin the amount of time that they
need it, and if I can't, I haveto tell you no, or I can tell
you I can't do it in that time,but I can do it by this time.
So I will say I do think I getmy orders out pretty quickly,

(18:02):
though I have less bad days nowthan I have had before.
So I don't know.
I know we talked about it.
I believe we talked about it,but at the end of 2023, I had
spinal surgery and after that Ihad to close down my business
for a little while because, ofcourse, I couldn't go down the
stairs, I couldn't bend over.
I couldn't bend over.
I couldn't do all these thingsthat I love to do.

(18:24):
So I did have to take a breakfrom my business, and I do have
to step back sometimes.
Um, are they?
Is this something that?

(18:46):
they like to do as well my sonis not crafty at all.
He is the smart one, not sayingmy daughter's not smart, but he
is the the mind you know, he'sall about schoolwork, all about
his grades.
And my daughter, she is really,really crafty, but she does not
want to embrace it.

(19:06):
She is actually better at methan a lot of the things that I
do, but she won't, she won'tembrace it.
She actually just went tocollege this year.
My daughter goes to GeorgiaState.
She runs for their track team.
She did get a scholarship to gorun there, so she is out here
enjoying and living her bestlife in atlanta.

(19:27):
Okay, um, but um, yeah, she isvery crafty, she, she, but she
won't embrace it she won'tembrace it yet.

Speaker 1 (19:39):
So you're like okay, right, like what, mommy?

Speaker 2 (19:47):
yeah, she's actually very, very good.
She can look at colors and tellme if they'll go together, if
they won't go together, if Ishouldn't do that or if I should
do that.
She's actually better than meat a lot of stuff that I do.
We'll see.
She was going to school fornursing.
Maybe she'll be the craftynurse.

Speaker 1 (20:11):
Hey, nothing wrong with that.
Or maybe she could teach herpatients that she's working with
, how here's when they feel downand out or like let me show you
how to do something to gettheir mind, you know.
Okay, I could do that Right.

Speaker 2 (20:25):
But you want to work with children, so that would be
excellent Right up her alleyRight.

Speaker 1 (20:30):
Right up her lane.
She doesn't know it yet, sowe're going to watch.
We're going to sit back andlike, look at her and watch and
then when she starts coming inand say, mommy, I showed the
child how to do this, you'regoing to nod your head and say,
baby, I know what's in you allthe time.
Are there any messages when youdo your creativity?

(20:52):
Are there any messages thatyou're trying to send to
patients?
Not even patients, butproviders, the whole network?
Is there any messages thatyou're trying to send?

Speaker 2 (21:03):
To the providers like we just want to be heard, and
sometimes that is more than likeI can wait on my diagnosis if I
feel like you're listening tome, hearing me, are you or are
you just?
You Are just so for me.

(21:23):
I am overweight due to cortisoland when I go in, doctors just
look and say, oh, you're fat.
So everything that ever has todo with my body and it being
messed up is because I'm fat.
So I'm like we just want to beheard.
I was telling the doctors.

(21:44):
So Cushing's disease can causea plethora of things.
Some of mine include I haveosteoporosis at the age of 39.
I had a fat patch on my spine.
So according to them, it's likeoh well, you're fat, so lose

(22:04):
weight and it'll go away.
Well, at a certain point Ibecame my walking.
I couldn't.
My mobility changed and Icouldn't walk.
And that's when I met thelovely Sandra and the first
thing she helped me with wastrying to get a wheelchair.
And I'm like it's been a year.

(22:25):
She's like well, why are youjust not calling me?
So she helped me through and Ikid you not, it was like a month
later I had my wheelchair andnow, to this day, I sit in the
crafting community becauseeverywhere I go, I always want
to build a community.

(22:45):
I never just want to besomebody that's selling products
online.
I will always have a community.
I will always advocate forpeople in their health.
And I recently started gettingon TikTok and I follow a lot of
creatives, a lot of crafters, alot of people that do resin art,

(23:07):
and I've noticed a lot of theBlack women saying, oh, I have
thyroid disease or I havefibroids or I have.
And this is every woman thatI'm coming across and I'm like,
well, if all of us are havingissues, what can we do to help

(23:32):
fix this?
So one of the ladies, she's onthe live and she's like, yeah, I
haven't had, I have, she hadthyroid disease and she hasn't
had her medicine.
And I'm like, hey, I know youdon't know me, but I know
somebody that might can help.
And I come off as the strangelady on TikTok trying to help.

(23:55):
But I'm like I know somebodythat might be able to help and
if I can't help, if I can't justbe an ear, hey, I'm calling
Sandra's like hey, this persongot this issue.
I gave them your number so theycould call you.
They need help Because we don'thave anybody out here helping
us.
We don't have anybody to callwhen we don't understand what's

(24:17):
going on with our health, ordon't understand what's going on
with this paperwork, or don'tunderstand how to get through to
insurance companies or how toget through the political red
tape.
And I thank you.

Speaker 1 (24:31):
I thank you from the bottom of my heart for being
that person, for us, you know,and it's like and that's
actually one reason why, it'sthe main reason why we're
hosting the Charms Many HelpsFoundation is having the Unseen
Health Summit on October 25th,in October, because we realized

(24:53):
I realized personally that I hadtwo sisters who passed away
from.
One passed away from a reallyrare condition and the other one
passed away because she wasgaslit, and so, on a daily basis
, I'm talking to people whodon't get it right, and they
don't get it because nobody'seducating them right.
Like you just said, you're onTikTok and you hear, these women

(25:16):
and all these women have all ofthese problems and nobody is
listening and nobody reallyunderstands that this is what's
needed.
Right, we need to come together, we need to address some of
these unseen conditions.
We need to address some ofthose conditions that we know
about, but we need to showpeople how to go and where to
get help from, so that we're allnot sitting around grieving.

(25:39):
We're all not sitting aroundgrieving, we're all not sitting
around dying.
We're all not sitting aroundworried about those people who
have those conditions and sayingI just feel like giving up.
We can give hope to people,which is why we are doing the
Unseen Health Summit in Octoberhere in Chicago.
Hopefully we'll be able tobranch it on a global level.
That's what we're working onright now.

(26:00):
So hopefully we'll find someonethat'll be able to branch it on
a global level.
That's what we're working onright now.
So hopefully we'll find someonethat will be able to come in
and say OK, I could do that foryou.
You know I can control yourZoom while you guys are speaking
.
So that's a little bit aboutthe reasoning why we're having
the Unseen Health Summit.
Next question I wish I couldcome to Atlanta and do that.

(26:21):
You know what, who knows, we may, we might start branching it
off, which is another reason whyI'm trying to do it on a global
level, so that they know that,hey, this is something that we
can do, we can share it, we canactually connect with those
people that are in those otherstates or in those other
countries to show them how to doit, so that this is an ongoing

(26:43):
thing.
This isn't a one and done thing.
This is an ongoing thing, andso that's what, behind the
scenes, we're working on.
We don't know if it's going topan out, but that's what we're
working on is getting people tobe able to see it, for, you know
, full space.
My other question to you isthis, but before I actually ask
you the last question, what I dowant you to do is can you show

(27:04):
us some of the lovely piecesthat you've actually created?

Speaker 2 (27:08):
Yes, oh, can I.
Oh, here it is.
I'm like well, didn't we gothrough this before we did okay,
can you see?
yes, I'm gonna see I justprepared a few slides of some of

(27:31):
the things I made recently.
Um, I made a chess board.
Um, I have several differentsizes of chessboards on my
website.
I do make advocacy things withresin.
These are some memorialbarriers that I made my

(27:53):
beautiful sister, aka fall of2024, and I just made this
recently for her, so that thatwas something close to my heart,
and I love to do dominoes.
If you play games, I gear a lotof things towards advocacy

(28:17):
advocacy and Greek life.
So I also do football,basketball, like whatever theme
you can imagine I can create foryou, and this is a labor of
love.
Recently, I started makingdominoes and I wanted to get

(28:41):
into making dominoes forchildren With.
This domino set is going toinclude five or six pages of
math worksheets so that the kidcan just practice and look at
something nice and have fun withit.
Let the kid can just practiceand look at something nice and

(29:03):
have fun with it.
I make all types of tumblers.
I work with a few companies, asoccer league and I just
graduation.
So I was fortunate enough to beable to create the things for
my daughter's graduation.
So here is books I made for hertrack team all the stuff I made

(29:30):
for graduation for her as wellas other people.
But I use my daughter herebecause this year was special to
me, because I did get to do allthese things for my daughter
and see her go to the next level.
So I do all different types ofcrafts, as you can see here.

(29:53):
So my website isshopcraftedwithtlc.
On my TikTok it'scraftedwithtlc, instagram and

(30:14):
Facebook craftedwithtlclc.

Speaker 1 (30:26):
That is all I have, all right, and so I thank you so
much, and so my last questionto you is this what advice would
you give to someone who's newlydiagnosed with Cushing's
disease or any type of diseaseand is searching for a way to
not live every day just you, youknow at a stalemate, just like,
okay, I'm just going to sithere and wait to die?
What advice can you give themabout staying active and staying

(30:48):
busy?

Speaker 2 (30:50):
Well, cushing's disease is one of those things
that go under the table.
We look and we say, oh, canceris bad, oh, these things are bad
.
I want to say Cushing's diseaseis right up there on that list
and you only have a few options.

(31:13):
But know your options.
Do your own research.
There are different options asfar as Cushing's disease versus
Cushing's syndrome.
There are different medicationsyou can take to lower or raise
your cortisol.
There are different surgeriesyou can have.

(31:36):
But know your options.
I didn't know my options andthat's one of the things I want
people to understand.
Find a community.
I'm out here, we are out here.
If you put hashtag Cushing'sdisease, I'm almost positive
You'll find a post of mine, apost of somebody's, because I

(31:57):
use it on everything.
So if you need help, reach outto people who are going through
it, because doctors only knowwhat they're getting taught out
of a book.
If you don't look like thepicture of a Cushing person in a
textbook, then to them youdon't have Cushing.

(32:20):
It's impossible because it'srare, but that's not always the
case.
You don't always get.
One of the major signs ofCushing's is purple striae, and
they get purple striae frombeing a Caucasian person.
Their skin turns purple.
Well, I'm not Caucasian, soyou're not going to find purple

(32:43):
straw egg, but you will findsome dark brown ones.
But because in the textbook itsays it has to be purple.
Now you just eliminated a wholerace of people who now you
don't have cushions.
So know your options, find acommunity and advocate for your

(33:04):
rights.
You know your body.
They don't.
If they don't believe in you,find you another doctor.
If that doctor don't believeyou, find you another doctor.
If you need help understandingsomething, reach out to people
like Sandra, like me, who canhelp guide you.

(33:25):
I may not have the answers, butI can guarantee you I know
somebody that does.
Somebody reached out to me andsaid hey, do you know anything
about Crohn's disease?
I don't, but I have a friendwho has Crohn's disease.
I can get you in contact withher and she can help you out.
So, and that's what thecommunity is, a big part of it.

(33:48):
Unfortunately, people who arenot chronically ill don't
understand people who arechronically ill.
So it'll be.
You'll be hard pressed to findsomebody who understands what
you're going through,understands how you're feeling.
It's hard because my doctorjust told me recently this is a

(34:11):
conversation that I haven't beenable to have with you yet that
I may be on steroids for therest of my life, and that wasn't
what I thought was gonna happen.
But now I have to pivot.
So now I have to figure out.
Okay, what test can I have doneto tell me that?

(34:32):
First of all, this is the casebecause I need you to prove to
me but, um, I'm from the show mestate.
I need you to show me whatyou're talking about, cause it
ain't making sense.
But now I have to pivot and Ihave to figure out, okay.
So what is my next step?
How do I want to take the nextstep in my life with trying to

(34:53):
figure out how to manage beingchronically ill for the rest of
my life, having to manage myenergy levels with medication
for the rest of my life?
How am I going to get past that?
And I take the advice that Igive other people.
I reach out to my community.

Speaker 1 (35:17):
And thank you so much for reaching out to your
community.
And, once again, that's thereason why we're doing, why
we're launching the UnseenHealth Summit here in Chicago,
because you are exactly correct,people that are not sick are
not going to understand peoplethat are sick.

(35:38):
As a matter of fact, I oftenhave to tell people that say, oh
, that's not for me, okay, whenis it going to be for you?
Right, you have to stop.
I mean, I'm glad I, the peoplewho have no health conditions
right now.
I consider them to be extremelyblessed.
We're all blessed, but Iconsider them to be extremely

(35:59):
blessed because they don't haveto depend on medication.
They you medication.
My nephrologist tells me allthe time Sandra, I don't have
you on the medicine right nowand I want to keep you off
because I'm telling you rightnow, if I put you on medicine,
you are going to stay on thatmedicine for the rest of your
life.
What it did was actuallyreinforce.
What I'm often always told isthat once they put you on

(36:22):
medicine, it's going to be hardfor them to take you off, for
various reasons which I'm notgoing to get into today.
But if someone wanted to reachout to me and say well, sandra,
what are those reasons?
I would be more than happy todiscuss them with them, because
it's a proven fact.
But how do we stay off of it?
We have to depend on each other.
You could do it by yourself.

(36:42):
You could be a patient on anisland by yourself.
You're only hurting yourself.
So podcasts such as the PatientExperience, speaking with Sandra
L going and seeing who's onFacebook, as far as the groups,
the health groups Going onLinkedIn LinkedIn is a good
channel now that actually alsohas a lot of health channel your

(37:02):
health groups that are onLinkedIn doing different things.
So there are all differenttypes of social media platforms
that you can get on.
But know this everyonelistening, no matter when you're
listening to it, june or myselfare medical doctors.
Dr Google and Mr Firefox arenot medical doctors, you may say

(37:26):
, but when I go to the doctor,that's what he be doing.
He be in or she be getting onthe internet, because they know
what resources they can trust.
They know that I can't go onwikipedia or I can't go on this
other channel because it's ablog.
It's not really peer-reviewedinformation, it's a blog.

(37:47):
So your doctors are trained toknow.
Your doctors, your dentists,your clinicians are trained to
know what sites are trustworthyand what sites aren't.
So please stop getting thesediagnoses and running home and
seeing what Dr, google, mrFirefox and all the other ones
all their cousins say about yourcondition.

(38:08):
And speak to people who havepersonal lived experiences so
they can help you through theprocess.
Every prognosis and everydiagnosis is not a death
sentence, and Jewel is not theonly one that's showing that
it's not a death sentence.
There are others out there thatare showing that it's not a
death sentence.
But because I know Jewel andbecause I believe in the work

(38:31):
that she's doing and I've seenher go through her personal
lived experience, I asked herand she always does she said,
yes, sandra, when you want me,because she wants to tell the
story to let other people knowthat these do exist.
What I do want to say is this Bekind always.
I end every session with thesame thing Be kind always.

(38:53):
It's free, it doesn't cost adime, a penny, it's free.
Be kind always, as Jewel wassaying when she was speaking.
You know, when she goes to thedoctor, even when she's not at
the doctor, that's how she getsfat.
They don't realize that there'sa health condition that's
causing her to be like that.
So how hurtful and how harmfulis it for you to say to someone

(39:18):
girl, you just fat, lose someweight, are you pregnant?
I mean statements like thatwhen someone is dealing with
already going through a healthchallenge, a health battle.
Those things hurt, they hurt,and you don't have to hurt
anybody.
You can be kind, and if youcan't be kind, walk the other
way and don't say nothing at all.
Don't open your mouth.

(39:40):
If you don't know what's rightto say, don't open your mouth,
walk away, turn around and walkaway and call it a day.
You know.
One of the other things that Ido want to add to the session
before I close out is this a lotof what you spoke about, about.
You know patients don't knowand they feel alone and they,
you know patients don't know andthey feel alone and they, you
know, what resources do we go tothose?

(40:09):
A lot of those issues willactually be discussed on our
digital health learning platformthat we will be releasing.
We're hopeful that we can getit to market, get it to the
public the first quarter of 2026.
The courses are done.
We're going through the usertesting period, so we're really
hoping that we will have it outto the public the first quarter
of 2026.

(40:29):
But even with it out to thepublic, if you have questions,
just ask.
That's what I'm here for,that's what Jewel's here for is
to ask those questions so thatyou're not going through these
health challenges alone and thatyour patient experience
questions, so that you're notgoing through these health
challenges alone and that yourpatient experience becomes one
that you know hey, yeah, I'mgoing through it, but I'm doing
my thing.
Uh, instead of yeah, you know,I'm just gonna go home, I'm, you

(40:50):
know, I'm not feeling well, I'mjust the downness.
We don't need the downness,right, joel?
Thank you, I appreciate you.

Speaker 2 (40:58):
I wanted to show you something, so I asked you if I
could donate something to your.

Speaker 1 (41:06):
The health summit.

Speaker 2 (41:07):
Yes, and I got these pocket hugs.
I make these pocket hugs andthey come in a little package
like this and I have alldifferent colors and I'll be
getting I'm preparing them toget them out in the mail to you
this week coming up.
So, um, hopefully they'll bethere for your summit and it's

(41:31):
just a little token to tellpeople that somebody's thinking
about you right, exactly, andthat's what I said when you was
like you know what, sandra, canI do some pocket hugs for you?

Speaker 1 (41:40):
And I was like you know what?
How many of us that are goingto the doctor and facing
different things, even not evengoing to the doctor, but I have
a bad day how cool is it toactually reach in your pocket
and feel a hug?
I mean, it gives you hope andit gives you strength.
I so thank you.
The patients that will be there, the attendees I'm not going to

(42:01):
say just patients, because wehave others that will be
attending, but they'll love it.
Yeah, right, yeah, big hit, bighit.
And so Delight Jewel is givingus an in-kind donation.
If you have something that'sin-kind and you're like Sandra,
I don't live in Chicago, I'm notthere, but hey, I think the
attendees would love this, can Iget it to you?
Like Sandra, I don't live inChicago, I'm not there, but hey,
I think the attendees wouldlove this, can I get it to you?

(42:23):
By all means, please reach out.
We're accepting monetary andnon-monetary donations because
we want this to be a success.

Speaker 2 (42:32):
I appreciate you.
Go ahead.
I actually have a few people inthe crafting community that
would like to donate, so I willbe giving them your information
so that they can donatewhatever's on their heart.

Speaker 1 (42:47):
Okay, I appreciate you.
We appreciate you from thebottom of our hearts.
My goal is if I can reach one,like I said earlier, one patient
makes me happy.
If I can see the light go offin one patient's heart and in
their eyes, it makes me happy.
If I can see the light go offin one patient's heart and in
their eyes, it makes me happy.
Each one teach one, reach one.

(43:07):
It's my mission and my goal.
I thank you.

Speaker 2 (43:11):
Thank you.

Speaker 1 (43:12):
Have the rest of a good night.

Speaker 2 (43:14):
You too.

Speaker 1 (43:16):
And then we'll talk offline about that steroid
situation.

Speaker 2 (43:19):
Yes, ma'am.

Speaker 1 (43:22):
Have a good one.

Speaker 2 (43:23):
You too.

Speaker 1 (43:24):
All right, bye.

Speaker 2 (43:25):
Bye-bye.