February 23, 2025 • 30 mins
What happens when a determined spirit meets a daunting diagnosis? Join us as we hear from Jewel Dukes, who courageously shares her battle with Cushing's disease. Discover the emotional rollercoaster she faced, from the challenges of weight gain, depression, and anxiety to the life-changing brain surgery to remove a tumor from her pituitary gland. Jewel's story is not just about enduring a rare disease; it's about the powerful connection and hope she found within a community that supports and uplifts her.
The path to finding support after a rare disease diagnosis is seldom straightforward. In our conversation, we explore Jewel's journey to connect with those who truly understand her struggles, especially on platforms like Facebook. We dive into the dual challenges of Cushing's disease and Lipoedema, shedding light on the pain and limited treatment options due to insurance obstacles. Jewel shares her wisdom on creating a practical toolkit for symptom management and the necessity of self-care, even when life seems overwhelming.
As we discuss holistic wellness, the episode also highlights the benefits of alternative therapies such as acupuncture and stretching for recovery and performance. We tackle the financial barriers to accessing these therapies and stress the importance of listening to one's body. Moreover, we underscore the need to support our friends who may be silently struggling, and how businesses like Crafted with TLC provide creative outlets and community support. As we gear up for Rare Disease Day, we celebrate the resilience and solidarity that Jewel and others find in shared experiences.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Andi (00:00):
Welcome back to my Spoonie Sisters podcast.
I'm Andi, and here with metoday is Jenny and Megan.
In honor of Disease Day, we arejoined by Ms Jewel Dukes, who
bravely shares her journey withCushing's disease, from battling
weight gain, depression andanxiety to making the life
changing decision to undergobrain surgery.
(00:22):
Jewel's story is one ofstrength and resilience.
Today we'll discuss the vitalrole of community support in
managing chronic illness, andJewel will share how her
community has helped her throughmedical procedures and recovery
, as well as her strategies forcoping with the unpredictability
of her condition.
Plus, she offers some insightsfrom both Cushing's and Addison
(00:43):
disease patients, while stayingstrong in the face of adversity.
We are super excited to haveJewel here with us to catch up,
to share her wisdom and herjourney.
Welcome, jewel.
Hi.
Thank you for having me.
Thank you for spending sometime with your sisters.
Can you share how your journeywith Cushing's disease began In?
Jewel (01:02):
2020, right as the pandemic started, I had too many
strokes and could not figureout why, what happened?
All the doctors, the MRIs,couldn't figure anything out.
So I went on this healthjourney.
If you eat healthy, youexercise, everything becomes
(01:26):
great, right?
So that's what I did.
I started eating healthy, Istarted exercising and I started
gaining weight.
I went to my primary carephysician oh, you're not doing
anything, right?
Go see a nutritionist becauseyou don't know how to eat.
So I had to go see anutritionist.
I had to go see a nutritionistbecause you don't know how to
eat, so I had to go see anutritionist.
(01:46):
I had to go see a physicaltherapist.
And all these people aretelling me things that I already
know.
I went to my gynecologist andI'm like hey, can you check my
hormones?
Can you do something?
but this I'm gaining weight andI'm working out and I'm eating
healthy, and no one believes me.
He told me I need to go see anendocrinologist.
I go see an endocrinologist andher first words to me were I
(02:10):
can give you medicine to helpyou lose weight.
And no, that's not what I want.
I want you to figure out whyI'm gaining weight.
So she's like well, there'sthis test we could do, but
you'll have to come back onMonday to do it.
So I have to take a pill onSunday night and come back in
Monday and have a blood test.
It was a cortisol test.
When I tested my cortisol, shecalled me back and she said well
(02:31):
, did you take the medicine?
I'm like, yeah, I took themedicine.
My numbers were astronomicallyhigh.
It was supposed to be at a Ican't even remember the normal
level, but mine was a 16.
I think it's like one point,something is where it's supposed
to be.
So she's like well, I'm gonnasend you to get an mri.
(02:52):
I went and got an mri and, um,it showed a tumor on my
pituitary gland.
So what she told me was well,we'll just watch it.
We'll wait and see whathappened.
So me, of course, being medoing research.
I knew that that wasn't correct, that in order for it to go
away they had to remove thetumor.
I took all of my documentation,went to another endocrinologist
(03:13):
and she told me yeah, you havepushing disease, you need to get
the tumor removed.
So I saw her in August.
By October I was having surgery.
So going through that process,it was a long process, it was a
very scary process and I don'twant to ever go through it again
.
Andi (03:33):
So you sprinkled in some brain surgery just now.
What was that like?
Let's address this from acouple angles, because I want to
pick your brain.
Pun intended non-medically, butmetaphorically.
What is that like mindset wiseas you're preparing for somebody
is about to go in my head.
And then how did you prepareyour family for that?
Jewel (03:53):
Going into your brain and it is scary, it is the worst
thing somebody can tell you.
That's how I felt.
I'm like you want to go into mybrain and remove it.
But from what they told me,well, we'll remove it and you'll
be fine, Everything will goback to normal and you'll lose
all the weight and you'll begood.
(04:14):
Well, that didn't happen for me.
So in my mind I'm like okay, Ican do this.
If it's going to help me, it'sgoing to help me get better.
This is fine.
My husband and I sat mychildren down at the time.
My son was five and my daughterwas 14 at the time.
We sat them down and told themhey, I'm gonna have to have
(04:35):
brain surgery and mommy's gonnaneed some help.
He's gonna have to help mommywith trying to heal and recover
and I need you all to be bigkids and help them.
I don't know if they reallyknew the severity of what was
going to happen yeah, what?
Jen (04:55):
what role has community support played in your journey,
my goodness?
Jewel (05:00):
so when I first found out I was sick, I wanted to go up
and tell my story and all thethings I thought about and I was
like, well, I don't want peopleto hate me, I don't want people
to tell me I'm lying.
People can be very mean on theInternet sometimes and I didn't
want that.
It took me a few months beforeI finally decided to get online
(05:24):
and share my story.
So, doing that, I have been metwith nothing but love.
It's been a big part of myhealing being able to talk to
people who have my disease, orbeing able to talk to people who
understand what it's like to besick, because having a chronic
illness, there's no way a personwho has never been sick can
(05:45):
understand.
So being able to have thatcommunity and have people to
talk to was vital for me how doyou manage both the physical and
emotional impacts of yourcondition.
Sometimes I don't, sometimes itmanages me.
But I used to be a person whodid everything.
(06:07):
I would rip around all theenergy in the world.
I could do all these things andhelp everybody.
And what I didn't realize thatwas because I had a cortisol
surgeon through my system.
I had no pain, I could do allthe things and I was superwoman.
I could do all the things and Iwas super woman.
I will say today I am physicallybetter than I was a year ago.
(06:31):
I no longer have to use mymobility aid on good days.
On bad days I still use my cane, but I'm still mentally one of
those people who like to do andlike to go, and I can do all the
things Physically.
I'm just not that personanymore.
(06:55):
So my body tends to let me knowwhen I've overexerted myself.
I don't like when that happens.
I don't like when my body hasto tell me okay, it's time to
sit down.
I try to keep conscious that myfamily, if they see I I drop
something, they'll pick it up,because they know if joel picks
it up it's probably gonna causesome pain she might pee on
herself, who knows?
So so, um, yeah, I just try togo day by day, and if my body
(07:18):
tells me to stop, I have to stop.
If my body tells me, okay, yougot a little bit more energy,
then I can do it.
Andi (07:24):
What advice would you give to someone else navigating rare
disease diagnosis?
Jewel (07:31):
Have a community.
For some reason, doctors don'ttend to know about rare diseases
and they don't tend to know howthey affect us.
It's helpful when you havesomebody who's been through that
and who knows.
Okay, maybe you should ask yourdoctor this, or maybe you
should ask your doctor that.
So community is a big part ofwhy I do what I do and why I
(07:55):
reach out to so many people,because it's easier to get help.
Andi (08:01):
So, when you were first looking for your community, what
were some of the things thatyou searched for?
If you were newly diagnosed orgoing through their diagnosis
journey, what were you searchingfor?
What was your Googleable itemfor support communities that led
you to your communities?
All of?
Jewel (08:18):
a sudden I knew Facebook would have a group so I Googled
all types of Cushing's groupsand facebook, because that's
where I started out.
On facebook, um, I googled allthe cushing's groups so every
cushing's group you couldprobably find.
I'm probably in that group orat least was in that group at
some point.
That's where I started.
(08:39):
Um, I googled and found thereare two non that I guess cater
to people with Cushing diseaseor adrenal diseases.
At me, to overcome the sideeffects, the symptoms, how I
could feel.
Should I feel this way?
(09:12):
Is this normal?
Is this side effect normal?
Am I on too many steroids?
Am I not on not enough steroids?
Because when I first gotdiagnosed, well after my surgery
, I wasn't on enough steroidsand I didn't know steroids and I
didn't know.
My doctor apparently didn'tknow.
I looked to the people in theFacebook group to help me.
Andi (09:31):
Actually, help me.
What advice would you givesomeone else navigating rare
disease diagnosis Do?
Jewel (09:38):
your research, find your community.
Being chronically ill is scary.
Being chronically ill is scaryand having a rare disease makes
that even scarier, becausethere's not a lot of research on
these diseases.
There's not a lot of doctorswho know about these diseases,
so it makes it very hard to findinformation.
(09:59):
Being in a community of peoplewho can help you live through
the situation that's my biggest.
Andi (10:06):
I can't stress that enough .
So, jewel, what's in yourtoolkit?
What's in your spoony toolkit?
Steroids?
She's on the juice, got it?
We juicing.
Jewel (10:15):
I'm on the juice Every day.
I take two different types ofsteroids four times a day.
I keep those with me at alltimes.
I keep the pain meds with me atall times.
I keep my cane with me at alltimes, because you never know
when you're going to need it.
I have my pen that Jenrecommended.
(10:37):
I can't find it right now, butit's a big pen and what is it
called?
Jen Dr, dr.
I love Dr, my Dr, greg pen.
And what is it called?
Jen, dr, dr, dr Grip I love DrGrip, my Dr Grip pen.
My hands don't hurt.
It's amazing.
I carry with me everywhere yes,mine's here somewhere up under
all this stuff.
I'm working so and I'm missingwhen I'm working.
So it's stuff everywhere.
(10:59):
But yeah, that that's what's inmy toolkit.
I carry with me everywherestuff to use the bathroom.
I have a phobia of publicrestrooms.
Andi (11:06):
So I can't I feel you on that.
I'm not a fan.
Jen (11:09):
How about your self-care kit?
What's in that?
Jewel (11:13):
Meditation.
Um, to be honest, lately myself-care has been very lacking,
mainly because I have a millionthings going on in my life.
I'm gonna be completely honestmy self-care right now is zero
to none.
I know that's horrible, butit's me being honest, so we're
being real.
Andi (11:32):
We go through those, those moments where we have self-care
slumps.
Right, that was a segue.
I just came out of a self-careslump Ebbs and flows, ebbs and
flows.
You have the energy for whatyou have the energy for, and
sometimes that self-care lookslike you were still.
Maybe sometimes not due to ourown wanting.
Sometimes our body makes us bestill and that is what self-care
(11:53):
looks like for us on that day.
But yeah, you gave your bodythe rest that it needs.
Linnea (11:59):
Self-care can look so different depending on the day
and the season of life thatyou're in.
Jen (12:06):
There's one topic we didn't really dive into at all.
So not only do you haveCushing's, but that's not the
only thing you have.
Can you tell us a little?
Jewel (12:15):
bit about that.
I have Lipoedema, which is afat disorder.
I have these small nodulesunder my skin that causes pain.
Lipoedema is pretty much a fatdisorder.
It ruins your lymphatic system.
My lymphatic system does notwork right as far as the fat.
(12:35):
I have extra fat in my arms, mystomach, my butt, my leg, only
my upper leg, though, not mylower legs.
So my upper legs are like thisand then it goes like really
small and I have these reallytiny ankles.
It causes pain.
There is no cure for lymphedema.
It can be taken care of byliposuction, but a lot of
(12:59):
insurance companies do not coverit.
So you would have to go throughappeals and have documents out
the butt to try to get yourinsurance to cover it.
But in my case I am not acandidate for surgery.
Because of me being on steroidsand my immune system being too
low, they don't think I wouldsurvive an infection from having
(13:23):
surgery.
Jen (13:24):
Would it come back, though, if people get that done?
Jewel (13:26):
It can come back, and it can come back in other areas
that you haven't had.
Can you describe what the painfeels like?
It's like feeling just sore allthe time, but if I'm touched it
hurts.
So like people hug me and thosetype of things, it kind of
hurts.
My kids don't really sit on mylap or be rough with me.
(13:48):
It's like touching the skin.
Jen (13:52):
I almost picture it like you're covered in a bunch of
painful knots and having anyonetouch you is like oh my gosh,
away, back away now.
Andi (14:01):
So do you do a lot of lymphatic drainage as self-care
or care for, like, your legs?
Does that help?
Does it?
Jewel (14:08):
hurt.
I try, I try.
I have a pneumatic pump that Iuse.
My insurance does not coverlymphatic drainage massages and
they are about $150 each time.
I try to go once a month.
Some months I can't make it,some months I can.
I use the massage gun to kindof break up the nodules.
(14:32):
Sometimes when they get really,really painful.
I can use the massage gun onthe arms.
But as far as the legs, I havea pneumatic pump that goes from
right up under my breasts allthe way down to my feet and it
massages my legs.
So I do get some relief thatway.
Jen (14:48):
Now something you told me about on Instagram when we were
chatting is that you do thisstretching thing.
Can you tell people what it is,because I'm going to butcher it
.
Jewel (14:57):
Yeah, it's called the Stretch Lab.
I have a video because I'mgoing to butcher it.
Yeah, it's called the stretchlab.
I have a video that I'm goingto post coming up here shortly,
but it's exactly what it soundslike they stretch you.
So, instead of me having totwist and stretch my back, they
will actually twist me andstretch my back.
(15:18):
They will actually lift my legup.
Andi (15:19):
It's amazing.
I love the stretch lab.
They're so awesome.
It's amazing.
Jewel (15:25):
The reason I started doing it was because we started
taking my daughter.
She's an athlete, so we startedtaking her before her meet and
it actually helped her getbetter time.
So I'm like, well, if it canhelp help her, why can't it help
me?
So I started going and it'samazing, and if you have one in
your area, I definitelyrecommend it.
Jen (15:46):
I picture it like going to the chiropractor times a hundred
.
You can see that Because I'lltell you when I go to the
chiropractor, even if I'm notpopping, the stretching me feel
so incredible.
I picture it being like that,but even better.
All right, andy, I saw thatface you were making.
Tell me what you're thinking.
Yes, yes, I want to know.
(16:08):
I want to know.
People think we're funny anyway, we got to hear it.
Andi (16:11):
Your word choice.
Your word choice.
Your word choice, the wordchoice Not you.
Joel, jen, stretching me out,stretching me out.
Then go to the chiropractor, hestretches me out and it feels
so good.
Your word choice.
Okay, your word choice.
And I was in the military and Iworked around a whole lot of
males, and so my mind goesexactly there.
(16:32):
It sure did.
I can't hear it now.
Jen (16:34):
Jen, I can't.
Would it help if I tell you thephysical therapist, a woman,
also helped me with that too?
Does that help or does thatmake it worse?
made it worse the woman alsostressed you out made it worse
okay, it doesn't matter ifthey're male or female, but a
person helping your body, yes,across the board, but man, a
person helping you to feel likeyou can relax better.
(16:58):
I mean, I don't want to takeaway from the humor we got to
let people laugh, but in allreality, anything that we can do
to help our bodies.
I do want to talk aboutacupuncture.
The one place I did findsomewhat local looks very, very
expensive, but then again Idon't know how much it should
cost, so I think it is expensivebecause when I was looking up
it was very expensive.
Jewel (17:18):
So, aside from the brain surgery, december 2023, I had
spine surgery and from that Ihave nerve damage down my left
side of my leg.
Andi (17:30):
And did it lead you to acupuncture?
Is that where we were going?
Okay, and I'm like I can'tafford that.
Others mean that insurancesdon't cover as much
complementary or alternativecare as they should.
If they just covered some camcare just a little bit, you
would have less people in yourwaiting rooms with ailments
(17:51):
where you're writing scripts,because it works very, very well
with any of the physicaltherapies and just like cupping
works super well.
Certain places and certaininsurances you can get to cover
your fitness component.
So look at what your insuranceis to see if it will cover your
one-time fitness component tonot exceed whatever their cap is
(18:13):
.
But they have written it in insuch small print now that you
don't know what's there.
But they may or may not coverone, a one-time holistic
anything, but it is expensive tonot want to be on a bunch of
medications for stuff yeah, butsee, if they covered that, then
you get.
Jen (18:30):
Well, then they don't there you go, there you go one thing
that I think is pretty cool isif, for the elderly anyway, they
have a thing called silversneakers that covers a gym
membership.
Yeah, I didn't know about thatuntil my mother-in-law moved in
with us, but they changed herinsurance and now she doesn't
have silver sneakers anymore.
Of course, dumb it's all dumb.
(18:51):
Okay, megan, I want to pry somequestions out of you.
What kind of stretching orat-home things would you
recommend to someone like Jeweldealing with the things she
deals with?
Linnea (19:03):
I mean, stretching is amazing, I feel like, honestly,
for anybody.
Sometimes I feel like it's morehelpful than the chiropractor,
because there are so manychiropractors who don't even
really touch on the stretchingcomponent, and sometimes those
muscles are like the tightnessof the muscles is the reason why
(19:23):
things kind of fall out ofplace, and if you're not fixing
that part of it and just, youknow, getting things back into
alignment for however long, likea day or a week or whatever
it's so likely that it's justgoing to come back out of place.
So the stretching, I think likewhatever feels good for you on
(19:45):
whatever day it is, that's goingto be the best thing.
So yeah, the stretch lab I'veheard amazing things about it.
You gone?
What was that?
Have you gone to the stretchlab?
I haven't.
I don't think I have one in myarea.
I'm going to look again, though, but last time I checked I
Googled it and I didn't have one, and I live in rural Iowa, so
(20:05):
there's not like a ton of thatstuff around here.
But I have had a few clientswho go to the stretch lab and
they just rave about it.
They're like this is the bestthing ever.
What is a copay?
Jen (20:17):
like, or is it a copay?
Do you have to pay a full priceto go to a stretch lab?
Jewel (20:21):
Yeah, I can't remember if it was through my I think it's
through my bank.
They have a program where youcan get a discount.
I ended up getting a discountand it was $130 a month for
stretching once a week, whichwas not bad.
I thought you were going to say$130 a month for stretching
once a week, which was not bad.
Jen (20:41):
I thought you were going to say $130 every time.
Okay, so pretty any better thanI was thinking.
Okay, Andy, I want to also askyou what tips would you give to
Jewel?
Andi (20:50):
Well, I would tell Jewel to sit down somewhere, because
we've had this conversation.
I would tell her to sit downsomewhere.
I would tell her that her brainneeds a vacation and deserves a
vacation at times, too, thatshe spends a lot of time
fighting in a body that'sfighting against her and I know
that she's tired that it's okayfor her to sit down and let
(21:10):
people love on her and show upfor her just as much as she's
showing up for her community, meincluded.
Jen (21:15):
I 100% agree with you.
I think that advice is goodadvice for everyone.
Andi (21:21):
Y'all check on the strong friends.
Okay, we need people to checkon your strong friends.
They're showing up, and they'reshowing up with a smile on
their face, but it doesn't meanthat they're not carrying
something really heavy.
So check in on your strongfriends.
Hear their voice, not justtheir words in a text.
Jewel (21:36):
Call and hear their voice .
And I was talking to Jenearlier she said he said usually
when you get quiet, I try tocheck on you, because that means
something's wrong.
I'm like, I'm over here, justlike treading water, but it's
not sustainable.
Jen (21:50):
We can only tread water for so long before we drown and
this is us.
Andi (21:53):
I don't understand this analogy because I can't swim, so
I don't understand the analogy.
I can't swim or tread water.
I instantly drown in thisscenario.
So I instantly drown.
My bones are heavy guys.
I instantly drown in thatscenario.
Jen (22:07):
So I think you need a floaty.
Andi (22:12):
Yes, I need a floaty.
Jen (22:14):
And even the floaty can only carry you for so long.
So I think this is my reminderto all of you have those people
I mean you draw that for me.
We all need that.
We all need those people thatwe can call up and say hey, I'm
barely treading water, myfloaty's got a hole in it, I'm
drowning quickly.
Let's talk about it.
Okay, you also have a business.
(22:35):
What's about your business?
Jewel (22:37):
My business is Crafted with TLC and I make awareness
apparel, custom gifts.
Right now I'm working forValentine's Day, so I have some
pretty cups that I'm making.
It started out as just my wayto get my mind off of what I was
(23:00):
going through.
It was something that I like todo, so I'm like, hey, if I got
to be in this house all the timebecause it's hard for me to get
out, then I'm going to dosomething that I like to do.
That hobby turned into mybusiness.
I have been so blessed to beable to give back to the chronic
illness community.
(23:20):
They think the point of abusiness is to make money, but
for me it's to feed people'sminds, and if that means giving
you a pretty cup is going tomake your day, then I want to be
that person to give you thatcup.
So for me it's just seeingpeople happy and seeing people
enjoy the things that I makewith them.
Jen (23:44):
I think it's also a good break for you to get away from
the thoughts in your mind aboutwhat you're struggling with and
your pain.
You might still be in pain asyou're creating these things,
but it's a healthy distractionwhen you're capable of doing it.
We all don't always have thecapacity to do the things we
love and we enjoy, but when wecan man, what a wonderful
distraction that is.
Jewel (24:03):
Oh yes, it helps.
It definitely helps, even tothe point where my husband, like
Joel, I can tell that you're inpain.
You probably should get up.
I'm like, if I can just finishthis one thing, but it's
definitely an attraction andit's helped me.
To be honest, I couldn't tellyou where I would be without me
starting my crafting business.
It's helped me mentally, it'shelped me physically and it's
(24:27):
just something that I love to do.
Andi (24:29):
For Valentine's Day.
Are you running any specialswith Crafted with TLC?
Jewel (24:35):
I am not running any specials.
So the way it works my business.
I cannot promote every holiday.
I cannot.
So unfortunately, no, I don'thave any specials going on for
Valentine's Day, but everythingon my website is there.
I don't think my prices areastronomically crazy.
(24:56):
I don't believe in that, likeif you want something nice, you
should be able to afford it, andif it's not gonna hurt me then
I'm on for it.
So yeah, I I just try to keepup with what I have going on.
Right now I have a few orders,so I wasn't able to get to Super
Bowl and I wasn't able to getto Valentine's Day.
(25:18):
But with me being chronicallyill and still having to run a
business, I try my best to dowhat I can.
Andi (25:25):
Yeah, y'all, if y'all don't go out to her socials and
check it out, because she doesrandom stuff at 11 o'clock at
night and it's always fire, itis always fire and I'm like go
to sleep, but then don't go tosleep because then I won't be
able to see these things thatyou're crafting, but it's always
really dope things, guys thankyou.
Jen (25:45):
Do you have any fun rare disease day projects or designs
that you're working on?
Jewel (25:50):
I do, and this is a surprise so excited, so I can
give away one thing.
I will be on Charles MediHelp,based out of Chicago.
It's having a Black HistoryMonth program, I guess, and I
will be speaking live for RareDisease Day and I'm very excited
about it.
She is a supporter of mybusiness and I'm definitely a
(26:14):
supporter of hers.
So if you don't know SandyWashington, get to know her,
because she's an amazing humanbeing.
She has a wealth of knowledgefor chronic illnesses and
insurance companies and she'shelped me with so many things.
And guess what y'all?
She does it for free, so thatis what I'm doing.
(26:37):
I do have some items that I'llbe coming out with for Rare
Disease Day, so I'm gettingthose together, trying to get
those posted here shortly, but Iam very excited.
I celebrate Rare Disease Dayevery year, whether it be
balloons or get a cake orsomething, so I'm excited to see
(26:58):
what this year brings.
Linnea (26:59):
Yay, I'm so excited I know that we've met each other
and connected, obviously throughthe Mindset Support Group, but
it's been so, so amazing gettingto actually hear all of of your
story and your resilience, justlike, shines through and you're
such an inspiration and asource of light, so I just want
(27:21):
to throw that out there, thankyou.
Jewel (27:23):
I love you all Like.
So, like you said, the mindsetgroup, I try to attend.
My brain doesn't work like it'ssupposed to.
I try to attend my braindoesn't work like it's supposed
to.
I try to attend when I can.
And Jen, if you message me, Itry.
I'm like I can't remember stuffand but I love getting to talk
to you all.
I love getting to work with youall and be working with Andy
(27:47):
with Village Street Health,which is another nonprofit that
I work with, and Jen now comingon Village Street Health, which
is another nonprofit that I workwith, and Jen now coming on
Village Street Health.
I'm super excited and you guyshave no idea how much you mean
to me and I truly appreciate youall and all the love and
support that you all give to meand the chronic illness
(28:08):
community as well.
I love you.
Jen (28:10):
I just love you.
I hope you know that and alwaysremember it.
Andi (28:13):
I'm a thug for real.
You're not going to make myeyes sweat.
I'm too tender to cry.
Linnea (28:17):
We love you so much, Jewel.
Jen (28:18):
Thank you.
Well, thank you for coming onand sharing more of your story.
I know we've had you on thepodcast before, but it's been,
oh geez, like almost two years,I don't know.
It's been a bit, a bit so.
So hopefully this was a deeperdive.
Now that I've gotten to knowyou better, I hope we were able
(28:39):
to cover more and share moreabout it.
So thank you for your time andfor sharing so much and all the
advocating that you do for therare disease community.
I know everyone appreciates you.
Well, until next time, don'tforget your spooch.
Welcome back to my Spoonie Sisters podcast.
I'm Andi, and here with metoday is Jenny and Megan.
In honor of Disease Day, we arejoined by Ms Jewel Dukes, who
bravely shares her journey withCushing's disease, from battling
weight gain, depression andanxiety to making the life
changing decision to undergobrain surgery.
(00:22):
Jewel's story is one ofstrength and resilience.
Today we'll discuss the vitalrole of community support in
managing chronic illness, andJewel will share how her
community has helped her throughmedical procedures and recovery
, as well as her strategies forcoping with the unpredictability
of her condition.
Plus, she offers some insightsfrom both Cushing's and Addison
(00:43):
disease patients, while stayingstrong in the face of adversity.
We are super excited to haveJewel here with us to catch up,
to share her wisdom and herjourney.
Welcome, jewel.
Hi.
Thank you for having me.
Thank you for spending sometime with your sisters.
Can you share how your journeywith Cushing's disease began In?
Jewel (01:02):
2020, right as the pandemic started, I had too many
strokes and could not figureout why, what happened?
All the doctors, the MRIs,couldn't figure anything out.
So I went on this healthjourney.
If you eat healthy, youexercise, everything becomes
(01:26):
great, right?
So that's what I did.
I started eating healthy, Istarted exercising and I started
gaining weight.
I went to my primary carephysician oh, you're not doing
anything, right?
Go see a nutritionist becauseyou don't know how to eat.
So I had to go see anutritionist.
I had to go see a nutritionistbecause you don't know how to
eat, so I had to go see anutritionist.
(01:46):
I had to go see a physicaltherapist.
And all these people aretelling me things that I already
know.
I went to my gynecologist andI'm like hey, can you check my
hormones?
Can you do something?
but this I'm gaining weight andI'm working out and I'm eating
healthy, and no one believes me.
He told me I need to go see anendocrinologist.
I go see an endocrinologist andher first words to me were I
(02:10):
can give you medicine to helpyou lose weight.
And no, that's not what I want.
I want you to figure out whyI'm gaining weight.
So she's like well, there'sthis test we could do, but
you'll have to come back onMonday to do it.
So I have to take a pill onSunday night and come back in
Monday and have a blood test.
It was a cortisol test.
When I tested my cortisol, shecalled me back and she said well
(02:31):
, did you take the medicine?
I'm like, yeah, I took themedicine.
My numbers were astronomicallyhigh.
It was supposed to be at a Ican't even remember the normal
level, but mine was a 16.
I think it's like one point,something is where it's supposed
to be.
So she's like well, I'm gonnasend you to get an mri.
(02:52):
I went and got an mri and, um,it showed a tumor on my
pituitary gland.
So what she told me was well,we'll just watch it.
We'll wait and see whathappened.
So me, of course, being medoing research.
I knew that that wasn't correct, that in order for it to go
away they had to remove thetumor.
I took all of my documentation,went to another endocrinologist
(03:13):
and she told me yeah, you havepushing disease, you need to get
the tumor removed.
So I saw her in August.
By October I was having surgery.
So going through that process,it was a long process, it was a
very scary process and I don'twant to ever go through it again
.
Andi (03:33):
So you sprinkled in some brain surgery just now.
What was that like?
Let's address this from acouple angles, because I want to
pick your brain.
Pun intended non-medically, butmetaphorically.
What is that like mindset wiseas you're preparing for somebody
is about to go in my head.
And then how did you prepareyour family for that?
Jewel (03:53):
Going into your brain and it is scary, it is the worst
thing somebody can tell you.
That's how I felt.
I'm like you want to go into mybrain and remove it.
But from what they told me,well, we'll remove it and you'll
be fine, Everything will goback to normal and you'll lose
all the weight and you'll begood.
(04:14):
Well, that didn't happen for me.
So in my mind I'm like okay, Ican do this.
If it's going to help me, it'sgoing to help me get better.
This is fine.
My husband and I sat mychildren down at the time.
My son was five and my daughterwas 14 at the time.
We sat them down and told themhey, I'm gonna have to have
(04:35):
brain surgery and mommy's gonnaneed some help.
He's gonna have to help mommywith trying to heal and recover
and I need you all to be bigkids and help them.
I don't know if they reallyknew the severity of what was
going to happen yeah, what?
Jen (04:55):
what role has community support played in your journey,
my goodness?
Jewel (05:00):
so when I first found out I was sick, I wanted to go up
and tell my story and all thethings I thought about and I was
like, well, I don't want peopleto hate me, I don't want people
to tell me I'm lying.
People can be very mean on theInternet sometimes and I didn't
want that.
It took me a few months beforeI finally decided to get online
(05:24):
and share my story.
So, doing that, I have been metwith nothing but love.
It's been a big part of myhealing being able to talk to
people who have my disease, orbeing able to talk to people who
understand what it's like to besick, because having a chronic
illness, there's no way a personwho has never been sick can
(05:45):
understand.
So being able to have thatcommunity and have people to
talk to was vital for me how doyou manage both the physical and
emotional impacts of yourcondition.
Sometimes I don't, sometimes itmanages me.
But I used to be a person whodid everything.
(06:07):
I would rip around all theenergy in the world.
I could do all these things andhelp everybody.
And what I didn't realize thatwas because I had a cortisol
surgeon through my system.
I had no pain, I could do allthe things and I was superwoman.
I could do all the things and Iwas super woman.
I will say today I am physicallybetter than I was a year ago.
(06:31):
I no longer have to use mymobility aid on good days.
On bad days I still use my cane, but I'm still mentally one of
those people who like to do andlike to go, and I can do all the
things Physically.
I'm just not that personanymore.
(06:55):
So my body tends to let me knowwhen I've overexerted myself.
I don't like when that happens.
I don't like when my body hasto tell me okay, it's time to
sit down.
I try to keep conscious that myfamily, if they see I I drop
something, they'll pick it up,because they know if joel picks
it up it's probably gonna causesome pain she might pee on
herself, who knows?
So so, um, yeah, I just try togo day by day, and if my body
(07:18):
tells me to stop, I have to stop.
If my body tells me, okay, yougot a little bit more energy,
then I can do it.
Andi (07:24):
What advice would you give to someone else navigating rare
disease diagnosis?
Jewel (07:31):
Have a community.
For some reason, doctors don'ttend to know about rare diseases
and they don't tend to know howthey affect us.
It's helpful when you havesomebody who's been through that
and who knows.
Okay, maybe you should ask yourdoctor this, or maybe you
should ask your doctor that.
So community is a big part ofwhy I do what I do and why I
(07:55):
reach out to so many people,because it's easier to get help.
Andi (08:01):
So, when you were first looking for your community, what
were some of the things thatyou searched for?
If you were newly diagnosed orgoing through their diagnosis
journey, what were you searchingfor?
What was your Googleable itemfor support communities that led
you to your communities?
All of?
Jewel (08:18):
a sudden I knew Facebook would have a group so I Googled
all types of Cushing's groupsand facebook, because that's
where I started out.
On facebook, um, I googled allthe cushing's groups so every
cushing's group you couldprobably find.
I'm probably in that group orat least was in that group at
some point.
That's where I started.
(08:39):
Um, I googled and found thereare two non that I guess cater
to people with Cushing diseaseor adrenal diseases.
At me, to overcome the sideeffects, the symptoms, how I
could feel.
Should I feel this way?
(09:12):
Is this normal?
Is this side effect normal?
Am I on too many steroids?
Am I not on not enough steroids?
Because when I first gotdiagnosed, well after my surgery
, I wasn't on enough steroidsand I didn't know steroids and I
didn't know.
My doctor apparently didn'tknow.
I looked to the people in theFacebook group to help me.
Andi (09:31):
Actually, help me.
What advice would you givesomeone else navigating rare
disease diagnosis Do?
Jewel (09:38):
your research, find your community.
Being chronically ill is scary.
Being chronically ill is scaryand having a rare disease makes
that even scarier, becausethere's not a lot of research on
these diseases.
There's not a lot of doctorswho know about these diseases,
so it makes it very hard to findinformation.
(09:59):
Being in a community of peoplewho can help you live through
the situation that's my biggest.
Andi (10:06):
I can't stress that enough .
So, jewel, what's in yourtoolkit?
What's in your spoony toolkit?
Steroids?
She's on the juice, got it?
We juicing.
Jewel (10:15):
I'm on the juice Every day.
I take two different types ofsteroids four times a day.
I keep those with me at alltimes.
I keep the pain meds with me atall times.
I keep my cane with me at alltimes, because you never know
when you're going to need it.
I have my pen that Jenrecommended.
(10:37):
I can't find it right now, butit's a big pen and what is it
called?
Jen Dr, dr.
I love Dr, my Dr, greg pen.
And what is it called?
Jen, dr, dr, dr Grip I love DrGrip, my Dr Grip pen.
My hands don't hurt.
It's amazing.
I carry with me everywhere yes,mine's here somewhere up under
all this stuff.
I'm working so and I'm missingwhen I'm working.
So it's stuff everywhere.
(10:59):
But yeah, that that's what's inmy toolkit.
I carry with me everywherestuff to use the bathroom.
I have a phobia of publicrestrooms.
Andi (11:06):
So I can't I feel you on that.
I'm not a fan.
Jen (11:09):
How about your self-care kit?
What's in that?
Jewel (11:13):
Meditation.
Um, to be honest, lately myself-care has been very lacking,
mainly because I have a millionthings going on in my life.
I'm gonna be completely honestmy self-care right now is zero
to none.
I know that's horrible, butit's me being honest, so we're
being real.
Andi (11:32):
We go through those, those moments where we have self-care
slumps.
Right, that was a segue.
I just came out of a self-careslump Ebbs and flows, ebbs and
flows.
You have the energy for whatyou have the energy for, and
sometimes that self-care lookslike you were still.
Maybe sometimes not due to ourown wanting.
Sometimes our body makes us bestill and that is what self-care
(11:53):
looks like for us on that day.
But yeah, you gave your bodythe rest that it needs.
Linnea (11:59):
Self-care can look so different depending on the day
and the season of life thatyou're in.
Jen (12:06):
There's one topic we didn't really dive into at all.
So not only do you haveCushing's, but that's not the
only thing you have.
Can you tell us a little?
Jewel (12:15):
bit about that.
I have Lipoedema, which is afat disorder.
I have these small nodulesunder my skin that causes pain.
Lipoedema is pretty much a fatdisorder.
It ruins your lymphatic system.
My lymphatic system does notwork right as far as the fat.
(12:35):
I have extra fat in my arms, mystomach, my butt, my leg, only
my upper leg, though, not mylower legs.
So my upper legs are like thisand then it goes like really
small and I have these reallytiny ankles.
It causes pain.
There is no cure for lymphedema.
It can be taken care of byliposuction, but a lot of
(12:59):
insurance companies do not coverit.
So you would have to go throughappeals and have documents out
the butt to try to get yourinsurance to cover it.
But in my case I am not acandidate for surgery.
Because of me being on steroidsand my immune system being too
low, they don't think I wouldsurvive an infection from having
(13:23):
surgery.
Jen (13:24):
Would it come back, though, if people get that done?
Jewel (13:26):
It can come back, and it can come back in other areas
that you haven't had.
Can you describe what the painfeels like?
It's like feeling just sore allthe time, but if I'm touched it
hurts.
So like people hug me and thosetype of things, it kind of
hurts.
My kids don't really sit on mylap or be rough with me.
(13:48):
It's like touching the skin.
Jen (13:52):
I almost picture it like you're covered in a bunch of
painful knots and having anyonetouch you is like oh my gosh,
away, back away now.
Andi (14:01):
So do you do a lot of lymphatic drainage as self-care
or care for, like, your legs?
Does that help?
Does it?
Jewel (14:08):
hurt.
I try, I try.
I have a pneumatic pump that Iuse.
My insurance does not coverlymphatic drainage massages and
they are about $150 each time.
I try to go once a month.
Some months I can't make it,some months I can.
I use the massage gun to kindof break up the nodules.
(14:32):
Sometimes when they get really,really painful.
I can use the massage gun onthe arms.
But as far as the legs, I havea pneumatic pump that goes from
right up under my breasts allthe way down to my feet and it
massages my legs.
So I do get some relief thatway.
Jen (14:48):
Now something you told me about on Instagram when we were
chatting is that you do thisstretching thing.
Can you tell people what it is,because I'm going to butcher it
.
Jewel (14:57):
Yeah, it's called the Stretch Lab.
I have a video because I'mgoing to butcher it.
Yeah, it's called the stretchlab.
I have a video that I'm goingto post coming up here shortly,
but it's exactly what it soundslike they stretch you.
So, instead of me having totwist and stretch my back, they
will actually twist me andstretch my back.
(15:18):
They will actually lift my legup.
Andi (15:19):
It's amazing.
I love the stretch lab.
They're so awesome.
It's amazing.
Jewel (15:25):
The reason I started doing it was because we started
taking my daughter.
She's an athlete, so we startedtaking her before her meet and
it actually helped her getbetter time.
So I'm like, well, if it canhelp help her, why can't it help
me?
So I started going and it'samazing, and if you have one in
your area, I definitelyrecommend it.
Jen (15:46):
I picture it like going to the chiropractor times a hundred
.
You can see that Because I'lltell you when I go to the
chiropractor, even if I'm notpopping, the stretching me feel
so incredible.
I picture it being like that,but even better.
All right, andy, I saw thatface you were making.
Tell me what you're thinking.
Yes, yes, I want to know.
(16:08):
I want to know.
People think we're funny anyway, we got to hear it.
Andi (16:11):
Your word choice.
Your word choice.
Your word choice, the wordchoice Not you.
Joel, jen, stretching me out,stretching me out.
Then go to the chiropractor, hestretches me out and it feels
so good.
Your word choice.
Okay, your word choice.
And I was in the military and Iworked around a whole lot of
males, and so my mind goesexactly there.
(16:32):
It sure did.
I can't hear it now.
Jen (16:34):
Jen, I can't.
Would it help if I tell you thephysical therapist, a woman,
also helped me with that too?
Does that help or does thatmake it worse?
made it worse the woman alsostressed you out made it worse
okay, it doesn't matter ifthey're male or female, but a
person helping your body, yes,across the board, but man, a
person helping you to feel likeyou can relax better.
(16:58):
I mean, I don't want to takeaway from the humor we got to
let people laugh, but in allreality, anything that we can do
to help our bodies.
I do want to talk aboutacupuncture.
The one place I did findsomewhat local looks very, very
expensive, but then again Idon't know how much it should
cost, so I think it is expensivebecause when I was looking up
it was very expensive.
Jewel (17:18):
So, aside from the brain surgery, december 2023, I had
spine surgery and from that Ihave nerve damage down my left
side of my leg.
Andi (17:30):
And did it lead you to acupuncture?
Is that where we were going?
Okay, and I'm like I can'tafford that.
Others mean that insurancesdon't cover as much
complementary or alternativecare as they should.
If they just covered some camcare just a little bit, you
would have less people in yourwaiting rooms with ailments
(17:51):
where you're writing scripts,because it works very, very well
with any of the physicaltherapies and just like cupping
works super well.
Certain places and certaininsurances you can get to cover
your fitness component.
So look at what your insuranceis to see if it will cover your
one-time fitness component tonot exceed whatever their cap is
(18:13):
.
But they have written it in insuch small print now that you
don't know what's there.
But they may or may not coverone, a one-time holistic
anything, but it is expensive tonot want to be on a bunch of
medications for stuff yeah, butsee, if they covered that, then
you get.
Jen (18:30):
Well, then they don't there you go, there you go one thing
that I think is pretty cool isif, for the elderly anyway, they
have a thing called silversneakers that covers a gym
membership.
Yeah, I didn't know about thatuntil my mother-in-law moved in
with us, but they changed herinsurance and now she doesn't
have silver sneakers anymore.
Of course, dumb it's all dumb.
(18:51):
Okay, megan, I want to pry somequestions out of you.
What kind of stretching orat-home things would you
recommend to someone like Jeweldealing with the things she
deals with?
Linnea (19:03):
I mean, stretching is amazing, I feel like, honestly,
for anybody.
Sometimes I feel like it's morehelpful than the chiropractor,
because there are so manychiropractors who don't even
really touch on the stretchingcomponent, and sometimes those
muscles are like the tightnessof the muscles is the reason why
(19:23):
things kind of fall out ofplace, and if you're not fixing
that part of it and just, youknow, getting things back into
alignment for however long, likea day or a week or whatever
it's so likely that it's justgoing to come back out of place.
So the stretching, I think likewhatever feels good for you on
(19:45):
whatever day it is, that's goingto be the best thing.
So yeah, the stretch lab I'veheard amazing things about it.
You gone?
What was that?
Have you gone to the stretchlab?
I haven't.
I don't think I have one in myarea.
I'm going to look again, though, but last time I checked I
Googled it and I didn't have one, and I live in rural Iowa, so
(20:05):
there's not like a ton of thatstuff around here.
But I have had a few clientswho go to the stretch lab and
they just rave about it.
They're like this is the bestthing ever.
What is a copay?
Jen (20:17):
like, or is it a copay?
Do you have to pay a full priceto go to a stretch lab?
Jewel (20:21):
Yeah, I can't remember if it was through my I think it's
through my bank.
They have a program where youcan get a discount.
I ended up getting a discountand it was $130 a month for
stretching once a week, whichwas not bad.
I thought you were going to say$130 a month for stretching
once a week, which was not bad.
Jen (20:41):
I thought you were going to say $130 every time.
Okay, so pretty any better thanI was thinking.
Okay, Andy, I want to also askyou what tips would you give to
Jewel?
Andi (20:50):
Well, I would tell Jewel to sit down somewhere, because
we've had this conversation.
I would tell her to sit downsomewhere.
I would tell her that her brainneeds a vacation and deserves a
vacation at times, too, thatshe spends a lot of time
fighting in a body that'sfighting against her and I know
that she's tired that it's okayfor her to sit down and let
(21:10):
people love on her and show upfor her just as much as she's
showing up for her community, meincluded.
Jen (21:15):
I 100% agree with you.
I think that advice is goodadvice for everyone.
Andi (21:21):
Y'all check on the strong friends.
Okay, we need people to checkon your strong friends.
They're showing up, and they'reshowing up with a smile on
their face, but it doesn't meanthat they're not carrying
something really heavy.
So check in on your strongfriends.
Hear their voice, not justtheir words in a text.
Jewel (21:36):
Call and hear their voice .
And I was talking to Jenearlier she said he said usually
when you get quiet, I try tocheck on you, because that means
something's wrong.
I'm like, I'm over here, justlike treading water, but it's
not sustainable.
Jen (21:50):
We can only tread water for so long before we drown and
this is us.
Andi (21:53):
I don't understand this analogy because I can't swim, so
I don't understand the analogy.
I can't swim or tread water.
I instantly drown in thisscenario.
So I instantly drown.
My bones are heavy guys.
I instantly drown in thatscenario.
Jen (22:07):
So I think you need a floaty.
Andi (22:12):
Yes, I need a floaty.
Jen (22:14):
And even the floaty can only carry you for so long.
So I think this is my reminderto all of you have those people
I mean you draw that for me.
We all need that.
We all need those people thatwe can call up and say hey, I'm
barely treading water, myfloaty's got a hole in it, I'm
drowning quickly.
Let's talk about it.
Okay, you also have a business.
(22:35):
What's about your business?
Jewel (22:37):
My business is Crafted with TLC and I make awareness
apparel, custom gifts.
Right now I'm working forValentine's Day, so I have some
pretty cups that I'm making.
It started out as just my wayto get my mind off of what I was
(23:00):
going through.
It was something that I like todo, so I'm like, hey, if I got
to be in this house all the timebecause it's hard for me to get
out, then I'm going to dosomething that I like to do.
That hobby turned into mybusiness.
I have been so blessed to beable to give back to the chronic
illness community.
(23:20):
They think the point of abusiness is to make money, but
for me it's to feed people'sminds, and if that means giving
you a pretty cup is going tomake your day, then I want to be
that person to give you thatcup.
So for me it's just seeingpeople happy and seeing people
enjoy the things that I makewith them.
Jen (23:44):
I think it's also a good break for you to get away from
the thoughts in your mind aboutwhat you're struggling with and
your pain.
You might still be in pain asyou're creating these things,
but it's a healthy distractionwhen you're capable of doing it.
We all don't always have thecapacity to do the things we
love and we enjoy, but when wecan man, what a wonderful
distraction that is.
Jewel (24:03):
Oh yes, it helps.
It definitely helps, even tothe point where my husband, like
Joel, I can tell that you're inpain.
You probably should get up.
I'm like, if I can just finishthis one thing, but it's
definitely an attraction andit's helped me.
To be honest, I couldn't tellyou where I would be without me
starting my crafting business.
It's helped me mentally, it'shelped me physically and it's
(24:27):
just something that I love to do.
Andi (24:29):
For Valentine's Day.
Are you running any specialswith Crafted with TLC?
Jewel (24:35):
I am not running any specials.
So the way it works my business.
I cannot promote every holiday.
I cannot.
So unfortunately, no, I don'thave any specials going on for
Valentine's Day, but everythingon my website is there.
I don't think my prices areastronomically crazy.
(24:56):
I don't believe in that, likeif you want something nice, you
should be able to afford it, andif it's not gonna hurt me then
I'm on for it.
So yeah, I I just try to keepup with what I have going on.
Right now I have a few orders,so I wasn't able to get to Super
Bowl and I wasn't able to getto Valentine's Day.
(25:18):
But with me being chronicallyill and still having to run a
business, I try my best to dowhat I can.
Andi (25:25):
Yeah, y'all, if y'all don't go out to her socials and
check it out, because she doesrandom stuff at 11 o'clock at
night and it's always fire, itis always fire and I'm like go
to sleep, but then don't go tosleep because then I won't be
able to see these things thatyou're crafting, but it's always
really dope things, guys thankyou.
Jen (25:45):
Do you have any fun rare disease day projects or designs
that you're working on?
Jewel (25:50):
I do, and this is a surprise so excited, so I can
give away one thing.
I will be on Charles MediHelp,based out of Chicago.
It's having a Black HistoryMonth program, I guess, and I
will be speaking live for RareDisease Day and I'm very excited
about it.
She is a supporter of mybusiness and I'm definitely a
(26:14):
supporter of hers.
So if you don't know SandyWashington, get to know her,
because she's an amazing humanbeing.
She has a wealth of knowledgefor chronic illnesses and
insurance companies and she'shelped me with so many things.
And guess what y'all?
She does it for free, so thatis what I'm doing.
(26:37):
I do have some items that I'llbe coming out with for Rare
Disease Day, so I'm gettingthose together, trying to get
those posted here shortly, but Iam very excited.
I celebrate Rare Disease Dayevery year, whether it be
balloons or get a cake orsomething, so I'm excited to see
(26:58):
what this year brings.
Linnea (26:59):
Yay, I'm so excited I know that we've met each other
and connected, obviously throughthe Mindset Support Group, but
it's been so, so amazing gettingto actually hear all of of your
story and your resilience, justlike, shines through and you're
such an inspiration and asource of light, so I just want
(27:21):
to throw that out there, thankyou.
Jewel (27:23):
I love you all Like.
So, like you said, the mindsetgroup, I try to attend.
My brain doesn't work like it'ssupposed to.
I try to attend my braindoesn't work like it's supposed
to.
I try to attend when I can.
And Jen, if you message me, Itry.
I'm like I can't remember stuffand but I love getting to talk
to you all.
I love getting to work with youall and be working with Andy
(27:47):
with Village Street Health,which is another nonprofit that
I work with, and Jen now comingon Village Street Health, which
is another nonprofit that I workwith, and Jen now coming on
Village Street Health.
I'm super excited and you guyshave no idea how much you mean
to me and I truly appreciate youall and all the love and
support that you all give to meand the chronic illness
(28:08):
community as well.
I love you.
Jen (28:10):
I just love you.
I hope you know that and alwaysremember it.
Andi (28:13):
I'm a thug for real.
You're not going to make myeyes sweat.
I'm too tender to cry.
Linnea (28:17):
We love you so much, Jewel.
Jen (28:18):
Thank you.
Well, thank you for coming onand sharing more of your story.
I know we've had you on thepodcast before, but it's been,
oh geez, like almost two years,I don't know.
It's been a bit, a bit so.
So hopefully this was a deeperdive.
Now that I've gotten to knowyou better, I hope we were able
(28:39):
to cover more and share moreabout it.
So thank you for your time andfor sharing so much and all the
advocating that you do for therare disease community.
I know everyone appreciates you.
Well, until next time, don'tforget your spooch.
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