March 17, 2025 • 38 mins
Uncover the power of advocacy and community in rheumatology as we welcome our empowering guests, Jennifer Weaver and Cheryl Crow. Jennifer, a dedicated patient leader, and Cheryl, an occupational therapist and founder of Arthritis Life, open up about their journeys as Rheum Champions at the ACR Convergence 2024. With a promise of insight and inspiration, we navigate the intricacies of large conferences, including the importance of patient voices at the table and the small yet significant moments that define their experiences.
Balancing the realities of healthcare challenges with triumphs, our conversation shifts to the heart of patient advocacy. Dive into the emotional, and at times, hopeful connections formed between patient advocates and medical professionals. Cheryl and Jennifer share personal stories on navigating sleep hygiene, the subtle pressures of defining "normal," and the importance of sensitivity in language. Through these reflections, we emphasize a broader understanding and embrace of diverse health experiences.
Explore the intricate world of rheumatology and the complexities of comorbidities like POTS, long COVID, and rheumatoid arthritis. We also shine a light on recent advancements in lupus treatment and managing chronic pain with "positive activity scheduling." Our discussion concludes with an homage to the supportive sisterhood that empowers us, urging listeners to connect with organizations like the Dysautonomia Association and Creaky Joints. As we wrap up, we celebrate the strength found in shared experiences and encourage you to stay engaged for future episodes.
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Cheryl: Rheum Champions - The Rheumatology Labhttps://www.instagram.com/arthritis_life_cheryl/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to another episode of my Spoonie
Sisters.
I'm your co-host, andy, andtoday we have an incredibly
exciting episode for you.
We're diving into the heart ofrheumatology advocacy, research
and empowerment with tworemarkable guests Jennifer
Weaver and Cheryl Crow.
Jen, our beautiful host, is apassionate patient, leader and
advocate, dedicated to shining alight on life with rheumatoid
(00:23):
arthritis and inspiring othersto live their fullest lives
despite chronic illness.
Cheryl is an extraordinaryoccupational therapist, fellow
advocate and founder ofArthritis Life, where she
empowers people with arthritisthrough education and practical
strategies for thriving.
These two inspiring womenrecently represented the
rheumatology community as roomchampions at the ACR Convergence
(00:45):
in 2024, where they attendedcutting-edge sessions and spoke
at prestigious RheumatologyResearch Foundation Awards
luncheon.
Together they bring a uniqueperspective on the latest
advancements, meaningfulconversations and how we can
continue to break down thebarriers for those living with
chronic illness.
Ladies, I'm glad to have you onthe pod.
Are we ready to chat?
Speaker 2 (01:07):
Of course.
Thanks so much.
Speaker 1 (01:09):
Awesome.
So the ACR?
What does that even stand for?
For people who are unaware ofwhat that even means?
Speaker 2 (01:17):
Yeah, the ACR stands for American College of
Rheumatology, which is a littlemisleading because it's not a
college like a university, it'sa professional association, kind
of like.
If you've ever heard of theAmerican Academy of
Pediatricians, you know, say,the American Academy of
Pediatricians suggests blah,blah, blah, it's like that.
(01:37):
For rheumatology, acr isAmerican College of Rheumatology
and the conference is wherethey bring together all the
leaders in the field to talkabout the latest research,
latest greatest developments.
Speaker 3 (01:48):
Yeah, and they like to call it where rheumatology
meets.
Speaker 1 (01:52):
Where rheumatology meets what.
Speaker 2 (01:55):
So where they meet together to discuss the latest,
the latest updates, and I willsay it's also what's really cool
about it for me as aoccupational therapist is it's
also a truly likemultidisciplinary organization.
So they also have nurses, nursepractitioners, psychologists,
physical therapists,occupational therapists anyone
(02:16):
in the health field that is thatworks with people with
rheumatic and musculoskeletaldiseases is able to come to this
conference and learn.
Oh, also pharmacists oftenunsung heroes.
So they have separate tracksfor people who are MDs or
doctors versus the allied healthprofessionals.
Historically, they haven'tinvolved patient partners as
(02:37):
well as they could have, and Ithink that there's been a big
push in the chronic illnesscommunity to involve what they
call patient partners, orpatients who are the experts in
their own care, in these events,and so Jen and I were able to
represent the rheumatologypatient community as Rheum
Champions, which, with aaffiliated organization, the
Rheumatology Research Foundation, rrf.
(03:00):
They're the foundation thatraises money for research in
rheumatology.
Speaker 1 (03:06):
That's a lot of acronyms.
That's a lot of acronyms, socan you share a little bit more
about?
We've covered the acronym baseright.
We got some new wrinkles on ourbrains.
What has it meant for you guysto be Roam Champions?
Speaker 2 (03:19):
Yeah, do you want to go first?
Sure, yeah, sorry, yeah, Ithink that for me it is just
intrinsically empowering to beinvited to share the patient
voice and it's been a reallypositive experience because the
researchers I think that a lotof them this is just my
impression from talking to them,but they are very cerebral and
(03:40):
they're looking at databases andspreadsheets and sometimes they
maybe have were motivated tojoin the research field
initially because they want tohelp patients, they want to help
advance the field Right, andultimately, everyone's trying to
understand how these diseaseswork so they can find a cure.
But sometimes they get.
They get.
You know, the day to day oftheir work is very tedious and
(04:02):
they don't get to actually talkwith patients that often who are
the ones that are actuallybenefiting from their work.
I mean, I think, jenny, maybeyou felt the same, I don't know,
but share your opinion but theyjust were really embracing of
us being there.
It wasn't at all.
Oh well, we have PhDs and we'resmart.
They were enthusiastic aboutour participation, so that was a
(04:22):
really positive experience.
Speaker 3 (04:24):
I agree, and you know I've talked to Andy before
about all the anxiety that Ifelt there and I think that was
pretty fresh from me.
Coming back Now I can reflectback and think about all the
positives instead of thinkingabout how awful I was feeling
while we were there, because yougot to see firsthand.
Oh my gosh, Jenny fell apart.
But besides all of that, what'snice is it's not like people
(04:45):
walk around with a tag on theirshoulder saying I have a PhD and
I have this and I have that.
Nobody's judging.
We're all there because we wantto learn, we want to engage.
It's an incredible experience.
It is overwhelming and thereare a lot of people, but it's in
such a good way and I rememberas we were giving bracelets out
(05:05):
to people, they'd get so excitedand they'd want to put them on
and get their picture taken andyeah it was so much fun I loved
it.
Speaker 1 (05:13):
I love it, so there's food there, yeah yeah.
Speaker 3 (05:17):
Yeah, it's kind of hard to fight sometimes bananas
were we were, yeah, different.
Speaker 2 (05:23):
So the conferences I've been to numerous of these
conferences and I will say itreally depends on the which site
they go to.
They rotate between the eastcoast, west coast, midwest, like
philadelphia and san diego aremy favorites because they have a
lot of good food around them.
Dc was not the best for food,so, yeah, but we went to some.
(05:43):
When we went to these sponsoredevents like the Rheumatology
Research Foundation lunch, wegot food.
But when we were trying to findour own snacks we were pretty
unlucky.
We had the whole quest to tryto find like literally one
banana and we couldn't findbananas.
They were just sold out.
Anyway, it was very dramatic.
Speaker 1 (05:59):
So I'm a foodie, I'm a foodie and I'm living
vicariously through you guys.
And you gave me a great seguebecause you mentioned that you
were at the RheumatologyResearch Foundation Awards
Luncheon.
Two, for this is a twoferquestion what was the food?
Was it delicious?
Was it anti-inflammatorybecause it's rheumatology, was
it anti-inflammatory and how didit feel to be a part of that
(06:21):
awards luncheon?
Speaker 2 (06:22):
yeah, I, we were both nervous because we had to speak
and so we were kind of likehaving that pre-speaking jitters
where your appetite goes away.
But I think it was like chickenand some quinoa was pretty
healthy and I actually thoughtit was.
Yeah, it was really good.
Um, and yeah, the awardsluncheon is where they get these
research awards, so basicallygrants to keep performing
(06:44):
research.
I mean it was a strange timebecause it was, I think, one or
two weeks after the election.
By that point we knew who wasgoing to be in power and that
they were saying that they'regoing to do a lot of funding
cuts.
And I actually think there wasa lot of the researchers.
We all everyone wanted to bepositive and celebrate the
research wins that had happenedand the advances in autoimmune
(07:07):
understanding and research andmedications.
But it was a little bit scarytoo, because I think when we got
into longer conversations withindividuals, they were like well
, I don't know what's going tohappen to my lab, my scientific
lab, if it's funded by a sourcethat's going to be like cutting
off my funding.
So kind of a mixed bag, I wouldsay.
Speaker 3 (07:25):
Yeah, and I agree with Cheryl.
We got in there early as wewere prepping and they bring out
the salads and the drinks.
But who wants to go eat saladbefore they're going to get on
stage, because the last thingyou want to do is have lettuce
sticking out of your teeth.
And yes to my idea to Cherylwas hey, let's start out with
like some kind of comedy, justbecause that might help loosen
(07:45):
my nerves.
It was great.
I loved that.
We did that and it worked outwell.
They loved it, they loved thepuns.
But all I could think is whatif I would have been standing
there with lettuce hanging outof my teeth?
Then, of course, the meal cameand it was chicken and it was
salmon and it looked sodelicious.
But again, I had nerves and soI ate what I could, and it was
delicious.
There was asparagus too, Ithink.
I think, yep, yep, there was adessert.
(08:07):
I never got to touch it, Idon't even know what it was, but
the meal itself was delicious,yeah.
Speaker 1 (08:12):
Were there any moments during the event that
really stood out or inspired youpersonally where you left and
you were like.
That lit a fire in me.
Speaker 2 (08:20):
I think what we ended up doing was we presented, we
highlighted a couple ofresearchers and said why their
work was important to us.
And I know because I saw ithappen to Jenny too.
Right after we spoke, whenthere was kind of like a mix and
mingle time for people to talkto each other, the researchers
came up to us.
We actually weren't expectingthis.
They were like one of them hadtears in her eyes because she
(08:42):
her research is all aboutpregnancy and I said this is
important to me because I had apregnancy like 10 years ago with
rheumatoid arthritis.
It was a planned pregnancy butthere weren't a lot of solid
guidelines and research backthen and it's already gotten so
much better for people now whoare experiencing pregnancy.
And she had tears in her eyesand she was so grateful that we
were interested in her researchand it just reminded me that the
(09:06):
researchers need to see thefaces of the people they're
actually helping.
It's so gratifying for them andit's gratifying for us to see
who's helping us.
I think so often as patientadvocates, there's a lot of
times we vent to each other,right?
People vent about this doctordidn't listen to me and this
doctor medically gas lit me andthose are all like, like real
I've had that happen andlegitimately like really
(09:26):
difficult situations to copewith.
But it's also empowering tocounterbalance that, to remember
that there's also the positivesof people out there who are
working till midnight in the labtrying to find a better
treatments for us.
So that that was.
That was the key moment.
I guess the woman coming upwith tears in her eyes I didn't
know it was going to touch herso emotionally.
How about you, Jen?
Speaker 3 (09:47):
Echo that too, the hugs that we got from
individuals afterwards or eventhe group at our table.
I loved the group at our table.
We had fellows right and theywere so sweet.
We had this incredible youngman recording the video for us.
We got a picture with him andwe got to cheer on a couple
people at our table as they weregetting their awards and the
(10:08):
excitement on their faces.
You can feel it and you want toclap and cheer to me and be
proud of them, because this isthe future.
These are the people that wantto help us.
They genuinely care and they'relooking at us with care.
That means a lot to me to havethem look at me like a real
person and truly care about me.
Speaker 1 (10:25):
So while you were there, you guys sat through some
pretty empowering sessions.
Jenny, I'd love to hear yourthoughts on chasing Zs rheumatic
disease.
How was that session?
Speaker 3 (10:38):
Chasing Zs.
It was pretty cool.
A girl that I know she workswith AI arthritis.
She shares about her illnesswith lupus.
Her name is Layla and her uncleis a rheumatologist and he was
one presenting at the Chase andZ's with a few other people that
I didn't really know as well,but it was super exciting to
hear them talk about how sleepis so important and how it can
(11:01):
be related in disorders withpatients of rheumatic disease.
They went through and talkedabout it, about how important it
is for them to teach us sleephygiene, and sitting there
thinking, oh my, yes, sleephygiene is such a huge topic
that we don't always talk about.
And does a family doctor talkto you about that, as they're
telling you you need to see arheumatologist?
(11:22):
Probably not.
Did my rheumatologist ever talkto me about it?
Not really.
It was actually a life coachthat talked to me about it and
once I started putting in bettersleep hygiene, I noticed I
started feeling a lot better anda lot less pain it was.
I was controlling it better.
It really resonated with me andmade so much sense.
I wanted to record every secondof what they had to say.
Speaker 1 (11:43):
Cheryl, you were a part of the session.
Was it called AddressingAbleism from the perspective of
the patient?
Can you walk us through some ofthose key points?
Speaker 2 (11:59):
It was really great.
I love talking about ableismand I didn't myself hitch this
idea.
So you have to apply to be aspeaker typically, but someone
else nominated me, which wasreally a honor, right?
Someone said I think I've heardher talk about this on social
media and I think she'd be agood speaker on this topic of
ableism.
So if you haven't heard of whatableism is, honestly I don't
think I had heard until I was onsocial media but it's
discrimination against peoplewith health conditions or
(12:22):
disabilities.
Racism is discriminationagainst people of different
racial backgrounds.
That's what ableism is againstpeople who either have a visible
or invisible disability orhealth condition.
I I was asked to share myexperience as a patient and as a
occupational therapist.
I pointed out basically,there's a lot.
There's some obvious, external,overt examples that are very
(12:47):
obvious.
They're very obvious.
Sometimes I'll get a comment ona tiktok video of and I'm um,
I'm using a mobility aid.
I'm actually usually because mymy small joints are more
affected with rheumatoidarthritis than my big joints, so
I don't have any issues withmobility, but I have issues with
my fingers.
I'll be wearing a compressionglove or using adaptive
equipment.
Someone's like you're ugly oryou.
(13:07):
You know these.
You shouldn't use those things.
You're weird, obvious exampleswhere you are less than because
you have a disability or healthcondition.
But the ones I was moreinterested in is the ones that
are more subtle.
They're things like thepressure to define a normal life
as just a healthy orable-bodied life and the
(13:28):
pressure that we as healthprofessionals I'm both a health
professional and a patient, so Ilike feel like I'm an
interpreter, sometimes talkingto doctors or other health
providers about this stuff, anda lot of times they'll say stuff
like well, you can have anormal life with these
conditions, and they don'trealize that's like a subtle
form.
Well, when they're saying it,yes, normal life is a catch-all.
(13:52):
That is saying a life that isnot ruled by chronic pain or
your disability is not going tobe the focal point of your life.
You can still do the thingsthat you want and love to do,
and that's a really positivemessage.
But we have to be careful,right, I said this a lot more
eloquently because I had allthese slides and stuff to keep
me on track, but basicallysaying, when we say the normal
(14:16):
life that most providers aretalking about in rheumatology is
they're defining normal ashealthy or able-bodied.
I actually used this examplewhen I was pregnant and people
were like, oh, as long as it'shealthy.
But okay, so what if it's nothealthy?
What are you saying?
Like my kid's going to be lesslovable because they're not
healthy?
Like, obviously, they're justsaying we all wish and desire I
mean, I desire to be, to havegood health, because having poor
(14:40):
health is painful and I don'tlike pain, but it's not a choice
a lot of people get to have.
And we should still beinspiring our patients to say
that you can have a good lifeinstead of saying you can have a
normal life.
Do you know what I'm saying?
That kind of thing.
So again, sorry this is not likethe most coherent, but I also
shared my own personal journeyof like feeling this pressure to
(15:00):
like overcome my arthritis orhave the hero's journey right
when I like climb the mountainof my illness and then like
surmount it.
I've even been asked when I'veshared my story publicly.
Someone said can you share howyou overcame it?
And I'm like people don't havea good script for like what a
chronic illness is.
I'm not overcoming it, it'sgoing to be here until there's a
(15:21):
cure.
But I'm living with it, I'mliving alongside it, but at
first I felt like I was failingbecause I didn't overcome it or
heal it, or beat it or defeat it, or like I'm an arthritis
warrior, like there's all theselike subtle pressures we put on
people and in the ways that we,as health providers, encourage
or reward patients right forimproving constantly.
(15:46):
It's much more complexrelationship than it seems at
first.
And one last little point I'llsay is a phrase I hadn't heard
till I was on social media a lotwhich is called inspiration
porn.
I hope it's okay to say that,but it's not actually talking
about real porn.
We're talking about the idea ofpictures of a person in a
wheelchair and it's the onlydisability in life is a bad
attitude.
(16:06):
And if they can do it, what'syour excuse?
You know, and it's the using ofthese images by able-bodied
people to make themselves like,to force the disabled population
or people with disabilities toconform to the able-bodied
standard, instead of sayingthere are many ways of having a
beautiful, full life.
(16:26):
Not everyone who is awheelchair user is having a
horrible experience, or also not.
They're not only worthy ifthey're able to like, do five
pull ups in the wheelchair.
It was a really great sessionand they were mostly allied
health providers meaningnon-doctors in there, because
there was a bunch of other highprofile sessions at the same
time, but there were some greatsocial workers and other people
(16:49):
that had great questions andstuff like that too.
Speaker 1 (16:51):
You were also part of another session.
It's not just joint pain.
Speaker 2 (16:55):
Yes, tell me a little bit more about that.
Yeah, that one was a littlemore straightforward, but this
I'm going to give EileenDavidson, our fellow rheumatoid
arthritis patient advocatefriend, some credit here.
She came up with the idea to dothis session as a
multidisciplinary session with awith a rheumatologist, and the
idea was people and even healthproviders tend to just look at
(17:17):
the joint symptoms of conditionslike rheumatoid arthritis and I
I helped a lot on this becauseI had done my own like podcast
episode on this too and dividedit all.
This said, let's have a wholehour-long session on just the
symptoms that are outside ofyour joints.
So we divided it into fatigueand then brain fog or cognitive
dysfunction, and then mentalhealth so concurrent anxiety and
(17:41):
depression that are veryprevalent in the rheumatoid
arthritis community and sleepissues, sleep disruptions.
We had a really amazing sleepspecialist from the University
of Michigan who's done amazingresearch in the effect of lack
of sleep on inflammation in yourbody and how, like Jenny
mentioned earlier, gettingadequate sleep can be so
(18:02):
positive for your inflammationlevels.
And we also talked about theimportance of interventions to
help reduce pain, fatigue andbrain fog.
So things like exercise andnutrition were two of the big
ones.
So it was great.
People were really receptiveand that one was pretty packed
with doctors and allied healthprofessionals too, so it's
literally doctor just tellingthem to just ask your patient
(18:26):
about other symptoms other thanjoint pain.
It's so simple, but often we'reonly asked oh, how are your
joints, how's your finger?
Can I feel your finger?
Can I feel your knees?
And it's like okay, can I alsotell you about the fatigue and
how that's affecting my qualityof life.
Speaker 1 (18:39):
So both of you have been these super advocates.
You guys are phenomenal in theadvocation space and even
superheroes like known in thecommunity, superheroes for the
rheumatology community.
How do you see these kinds ofevents and these discussions
(18:59):
shaping the future of care andsupport for people living with
chronic illnesses.
Speaker 3 (19:01):
Honestly, I feel like it's going to continually help
patients feel seen and caredabout, which is crucial, but
it's also so exciting to seethat they actually are working
really, really hard.
We don't see it.
We don't see all the behind thescenes things that they are
doing to make our lives better.
And you know, Cheryl, I knowthat you got to go to a few more
(19:22):
sessions than I did because Iwas there a very limited amount
of time, but I went with theArthritis Foundation to the
post-ACR.
There were people there thathad either been to ACR or they
got to watch it online.
They were presenting on it,Getting to hear more.
It was amazing, and one of thegals was so passionate In fact I
(19:43):
was going to give you her name.
I asked her if she'd be on thepodcast.
She was such a gifted speakerand passionate about what she
was talking about.
Andy, it's one I told you abouttoo.
It was about POTS, and theperson that originally had put
this together and presented itat ACR was saying if you in your
professional settings are notasking your patients about this
and if you are not diagnosingthis, there's something wrong,
(20:06):
because this is happening morethan any of us want to admit.
So stop trying to direct it toa different physician.
You should be diagnosing this.
You should be learning moreabout it.
And that struck a chord with me,and I don't even have POTS,
that's so funny.
Speaker 2 (20:19):
You say that, Jenny.
It's striking a chord.
Yeah, same with me.
Speaker 1 (20:22):
I was like it's striking a chord with Jenny.
It was very beneficial for Andybecause it was helping me
connect the pieces as to why Icouldn't swallow.
That is one of thecomorbidities that come with you
have POTS and if your POTS isout of control, the dysphagia.
And that was what has beenhappening to me for almost three
years.
I had been getting kickedaround for almost three years
(20:42):
where they're going, it's notthat, it's not that.
And then today I got to see mycardiologist and I'm like is it
this?
And he says you're my 1%.
He's like I treat POTS all thetime but I have never come
across someone who has lostweight like you, who lost their
hunger cues, who is having thedigestive upset and all of the
things.
He said you are my 1%.
(21:04):
I don't have the answer, butI'm committed to helping you
find the answer, because I don'tthink anybody has the answer
for the 1%.
We don't have the answer forthe 99.
Speaker 2 (21:15):
Was that the one called stirring the pots, long
COVID and beyond?
Yes, okay, did you get to go tothat one?
Yeah, that's so funny becausethat was the one I had
identified as a reallyinteresting as well, because
they were also talking about.
No one knows for sure exactlywhat is happening with long
COVID at the cellular level, butapparently they're finding
(21:35):
autoantibodies with people withlong COVID at rates higher than
people without long COVID.
So they're theorizing that itcould be, you know, an
autoimmune process where yourimmune system, after having
COVID for some people, ismistakenly attacking your
healthy tissues.
I think that that is a reallyfascinating development and just
(21:57):
in trying to keep an eye on it,you know, to see if that's
going to lead to maybe treatmentfor long COVID.
I don't have long COVID myselfeither.
I don't have a diagnosis ofPOTS.
I do have for sure orthostatichypotension where when I stand
up I will get lightheaded andstuff like that.
So it's just one potentialsymptom of pots from what I
understand.
(22:17):
But I just think that so manyof us are living with
comorbidities.
Right, it's not just rheumatoidarthritis, it's not just a show
grands or um pots.
It's like a lot of us havemultiple overlapping conditions,
so the more we can learn aboutthose comorbidities.
Hopefully managing those canhelp us improve our other
conditions too.
Speaker 3 (22:37):
I pulled up my slides from some of the ones that you
and I presented on Cheryl.
If you don't mind, Andy, I wantto dive into one of the people
that we shared on, because Iwish she had several, several
sessions, but I couldn't make itto any of them because they
were either the days I wasn'tthere or I was already committed
to something else.
Her name is ChristinaCharles-Schumann.
(22:59):
I wish that she was on socialsbecause I feel she would be a
wonderful one to watch and gleanfrom her research.
It's about approach to managingrheumatoid arthritis in the
setting of cardiovasculardisease.
That one has been so importantto me.
I talk about this all the time,but I have a cholesterol issue
that they've never really beenable to figure out why?
(23:21):
Because even when I was 98pounds, I had high cholesterol.
So they were like, okay, itdidn't matter what I was doing,
it didn't matter what I waseating, it didn't matter if I
was exercising.
My cholesterol was sky high,and so to get to hear from her
personally at sessions wouldhave been amazing.
But I was glad to at least beable to read about it and to
(23:41):
also share about her award atthe luncheon.
Speaker 2 (23:48):
Lupus I don't know if you might have heard this, but
the American College ofRheumatology one of their jobs
is to put out like theseclinical guidelines, which are
documents that are updatedtypically every five years.
That are what the doctors useto determine like what's the
state of the art or what's thelatest evidence pointing to as
(24:08):
the best interventions.
So these were updated in 2024for lupus specifically, and
there was a lot of like chatterin the medical community about
there being, you know, maybe,some new medications out there.
I don't have lupus, but theywere talking about especially
like the importance of tripletherapy, so hydroxychloroquine
and there's a couple that youcan look these up.
(24:31):
This is all public information.
It's just it's a lot of thescience stuff.
That's kind of like way toomany syllables for me, but that
was exciting to see some updatedresearch there for lupus.
Speaker 1 (24:43):
So were there any other sessions or topics that
you're just like?
Hey, everyone needs to knowabout this outside of the ones
we just talked about.
Speaker 2 (24:52):
I think I would say that for brain fog, I think that
, or cognitive dysfunction, thatthere are a lot of people that
were really resonating with theidea that we need better and
more studies on the role ofinflammatory diseases like
rheumatoid arthritis, how thoseaffect your brain, because brain
(25:14):
fog can sound like such a cutething, right, you're like, oh,
it's brain fog, like a littlecloud, but it can be
debilitating.
It can lead to you having ahard time focusing on maybe even
safety issues, like withdriving, potentially taking care
of children, being able toremember that there's something
stovetop.
There was a real call to actionthere.
(25:35):
Second thing is, I went to asession that was a from a pain
chronic pain researcher, drAfton Hassett, also,
coincidentally, from theUniversity of Michigan.
She has a great book calledChronic Pain Reset.
Yeah, and she's really great.
I know, sometimes it seems likethese things are so simple, but
in terms of, okay, what's thetakeaway that someone listening
(25:55):
to this podcast episode couldtake?
She talked about the importanceof she called them scheduling
positive activities, right?
Is that what you want to say?
Yeah, positive activity,scheduling, scheduling, it's so
simple, sounding right, but evenif you're in a lot of pain to
say what's something that canbring me joy today?
What's something small.
Is it calling a friend, or isit listening to music?
(26:17):
Is it smelling something that Ireally love, like putting some
lavender, you know, in my bath,or something like that?
I thought that was a great idea, something I've started
thinking about, like micromoments, small little moments of
joy, trying to schedule thosein the day rather than just
waiting for them to happen.
Did you pick up her book?
Yep.
Speaker 3 (26:36):
It's on my desk.
I sure did too, and my husbandwas like, oh great, another
chronic illness book.
It's great For anyone listening.
I actually added it to myAmazon Spoonie list, so if you
want it.
I'm not an affiliate, I don'tmake money off of it, but I love
sharing my list of all myfavorite finds which you can
find the beautiful Andy Byers onthere.
(26:56):
I have quite a few of her bookson there too.
Cheryl, if you write a book,you're going on.
Speaker 2 (27:01):
Okay, it's on my to-do list, my life to-do list.
Speaker 1 (27:04):
So, ladies, how can our listeners get involved in
advocating for more awarenessand resources for rheumatic
disease?
Do you have any favoriteorganizations that they could
support or specific actions theycould take?
Speaker 3 (27:17):
to just start the conversation, you can look at
people like Cheryl like I did afew years ago and be, oh my gosh
, I can never be one of them.
They're so famous I can't dothis stuff.
That's what we do.
That is seriously what we do.
We sit on the sidelines, we putyou on this pedestal and you're
a real person.
You are and you're a fun person.
But what you need to do when youwant to advocate is just start
(27:39):
using your voice.
You have to start somewhere.
If that means starting anInstagram account that is set up
for your specific conditionsand sharing about it and
reaching out to people, that's agood start.
But then, when you want tostart diving into other things,
don't be afraid.
I've asked Cheryl questions amillion times.
I've asked all kinds of otherpeople questions about what
(28:01):
they've done, what they enjoy,who they like to work with.
It's okay to ask thosequestions, Because not all these
organizations will just jumpinto your feed and say, hey,
want to work with me.
It doesn't work like that.
A few of them do, Like the roomchampion thing.
They reached out to us and itwas such an honor.
It was such an honor, but itdoesn't always work like that.
(28:22):
So what I would?
Speaker 2 (28:38):
say is just start somewhere and don't be afraid to
talk to people.
Advocacy every nonprofit that Iknow of for specific chronic
illnesses, whether it's likeDysautonomia Association or, you
know, ayurvedic Foundation,creaky Joints they all have a
like system for onboardingpeople into advocacy.
You don't have to figure it outon your own.
In fact, I don't get nervouseasily, and I was really nervous
(29:00):
the first time I talked to likean elected official because I
don't know how the governmentworks.
I don't remember, but literallyit doesn't matter what you know
about the government.
They just need to hear yourstory.
They need to hear how insurancebarriers, for example, have
affected you and your quality oflife.
If you're really a governmentgeek or into that kind of thing,
I have been flown out toWashington DC through some of
(29:23):
the donation dollars to thesefoundations.
You don't have to do it all onyour own, so that's really cool.
The second one, though, isbeing I'm a heart teacher cater
person, so I love volunteeringat in-person or now virtual
events, educational events, or,for example, in Washington State
(29:44):
, where Jenny and I both live,there's an annual family camp
for kids with arthritis andjuvenile inflammatory disease.
They're always looking for morevolunteers.
You can do anything from makingpainting decorations for the
room that they hold the summercamp in the rooms.
These are all grassrootsorganizations.
(30:06):
From my experience they couldalways use a hector set of
helping hands.
So the third thing is that forawareness, you can just start
where you bloom, where your plandid start.
Either if you're a social mediaperson like I am, start and you
become and you are identified,that you're comfortable with it,
start sharing about yourcondition, they connecting with
other patient advocates, or, ifyou want to Gosh.
(30:29):
I mean, there's so manycreative ideas.
I did the Jingle Bell Run forarthritis in Seattle and there
was a whole.
It was so adorable.
There was a whole lacrosse teamof eight-year-old kid and it
was the kid wants more people toknow that kids get arthritis
too, and they made a team forthe Jingle Bell Run, which the
proceeds go to the ArthritisFoundation.
So just be creative and havefun with it and that will make
(30:53):
it more sustainable for youExactly.
Speaker 3 (30:56):
A lot of these have websites or you can find them on
Instagram, tiktok, all thethings and just messaging the
person that runs that account.
Most of them are very engagingand the websites even have a
spot where you can say I want tobe a volunteer for the
Arthritis Foundation, for theone local to me, I'm near Oregon
but I'm still in Washington.
I don't get to go to thein-person events with you, but I
(31:19):
can hold a virtual one.
That's okay.
Those are great things to dotoo.
The Psoriasis Foundation that'sclose to me in Portland.
They're they're very active andI do stuff with them as well.
Just reach out doesn't hurtright.
Speaker 1 (31:31):
So last final question.
Question is does andy deviate?
Does she go rogue for this lastquestion?
Does she go rogue for this lastquestion?
Do I want to do that to SherylCrow, you know, because I've
been playing.
Yeah do it, do it, do it.
So you got to have thisexperience.
(31:52):
This is Sheryl's not her firstexperience with the convention.
What is your message of hope?
So, if you had to talk to youearly in your diagnosis and you
were in your darkest moment ofyour diagnosis journey trying to
figure it out, what message ofhope or resilience do you give
your future, you about whererheumatology is going?
Speaker 2 (32:15):
Yeah, that's a great question.
I always think of hope as thedouble-sided coin, and so, on
the one side is, every yearthere's more scientific
discoveries, there's more hopefor a cure.
That's the end game, right Iscuring rheumatoid arthritis and
autoimmune diseases.
On the other side, though, isthat I remind myself that life
(32:35):
isn't my life is not perfect.
It's not going to be perfect ifthere's a cure for rheumatoid
arthritis.
So there, right, there's alsothe idea that I don't want to
hinge all my hopes for a good,beautiful life on this idea of a
cure, because there's alwayschallenges in life.
There's always going to bethings that maybe stress me out.
Certainly, eliminatingrheumatoid arthritis for my life
(32:56):
would get rid of a specific setof issues, but I think this is
maybe just my point of view ingeneral, but so I'm very excited
about the hope for a cure.
I think they're certainlyobjectively closer than ever to
a cure for rheumatoid arthritisand autoimmune conditions in
general, but on the other hand,there's also always hope in the
moment for living a good life,with whatever challenges are
(33:20):
coming your way, and findingagain those pockets of joy and
finding those micro moments ofpositive activities
(33:47):
no-transcript yeah 100%.
Speaker 1 (33:52):
Yeah, I was just staring at you back, waiting on
you to answer the question.
Speaker 3 (33:56):
So this is where I admit that I'm having a brain
fog moment and I don't evenremember the question, so you
know what we have.
Speaker 1 (34:02):
that so you talking to younger you a message of hope
and resilience about the futureof you managing your rheumatic
situations and the future ofrheumatology.
What do you tell you?
Speaker 3 (34:16):
young you.
Well, first of all, I wouldtell young you, young me, I
would say your life's going tobe a little different and that's
okay.
It's going to scare you.
You're going to be a mom takingcare of three middle schoolers
and you're going to think yourlife is over and you can't do
the things for those kidsanymore, but you still can.
And with this changed life,you're going to meet incredible
(34:36):
people, lifelong friends, peoplethat are going to change your
life and that will make youthankful.
It's crazy to say I know I soundcrazy to people that I would
not change my life Because Idon't like pain.
Who likes pain?
But it's made me who I am todayand for that I am grateful.
I would never take it away.
I like the compassionate personthat I have become because of
(34:59):
what my life has done to me.
It is a beautiful thing that Iwould never take away because I
am who I am and I love you guysbecause of it love the slowness
that my life forced on me, thestillness I used to be so mad
about it.
Speaker 1 (35:16):
I appreciate the quiet moments.
I appreciate the stillness.
I appreciate rest.
You know we fight.
We fight naps as teenagers andlook forward to it in your 40s
Okay, because I love a goodjuicy nap.
So I love a juicy nap.
Well, ladies, thank you forspending some time with us and
for taking the time to shareyour experience.
(35:37):
I'm going off script.
So this is me and you right.
I appreciate what you do, andif nobody tells you today that
they see you, I see you and I amglad that you do what you do
because what you do gave.
And if nobody tells you todaythat they see you, I see you and
I am glad that you do what youdo because what you do gave me
my voice and it's the reason whyI do what I do and why I can do
it with a bigger voice.
And when I don't feel like I'mstrong enough, I have amazing
(36:00):
women like you that go.
Hey, I'll hold your hand.
Here's a spoon where I went tothis thing and this may help.
I am grateful for you and youguys are more than champions to
me, you'll always be more thanchampions to me.
So with that y'all I done gotsweat from my eyeballs and we're
going to go ahead and wrap thisup To everyone that is
listening.
Please stay tuned for moreepisodes and remember it may get
(36:23):
dark, but you're not alone.
You have some amazing sistersthat would just love to hold
your hand and send you a virtualhug.
We are in this together.
Until next time, don't forgetyour spoons.
Welcome back to another episode of my Spoonie
Sisters.
I'm your co-host, andy, andtoday we have an incredibly
exciting episode for you.
We're diving into the heart ofrheumatology advocacy, research
and empowerment with tworemarkable guests Jennifer
Weaver and Cheryl Crow.
Jen, our beautiful host, is apassionate patient, leader and
advocate, dedicated to shining alight on life with rheumatoid
(00:23):
arthritis and inspiring othersto live their fullest lives
despite chronic illness.
Cheryl is an extraordinaryoccupational therapist, fellow
advocate and founder ofArthritis Life, where she
empowers people with arthritisthrough education and practical
strategies for thriving.
These two inspiring womenrecently represented the
rheumatology community as roomchampions at the ACR Convergence
(00:45):
in 2024, where they attendedcutting-edge sessions and spoke
at prestigious RheumatologyResearch Foundation Awards
luncheon.
Together they bring a uniqueperspective on the latest
advancements, meaningfulconversations and how we can
continue to break down thebarriers for those living with
chronic illness.
Ladies, I'm glad to have you onthe pod.
Are we ready to chat?
Speaker 2 (01:07):
Of course.
Thanks so much.
Speaker 1 (01:09):
Awesome.
So the ACR?
What does that even stand for?
For people who are unaware ofwhat that even means?
Speaker 2 (01:17):
Yeah, the ACR stands for American College of
Rheumatology, which is a littlemisleading because it's not a
college like a university, it'sa professional association, kind
of like.
If you've ever heard of theAmerican Academy of
Pediatricians, you know, say,the American Academy of
Pediatricians suggests blah,blah, blah, it's like that.
(01:37):
For rheumatology, acr isAmerican College of Rheumatology
and the conference is wherethey bring together all the
leaders in the field to talkabout the latest research,
latest greatest developments.
Speaker 3 (01:48):
Yeah, and they like to call it where rheumatology
meets.
Speaker 1 (01:52):
Where rheumatology meets what.
Speaker 2 (01:55):
So where they meet together to discuss the latest,
the latest updates, and I willsay it's also what's really cool
about it for me as aoccupational therapist is it's
also a truly likemultidisciplinary organization.
So they also have nurses, nursepractitioners, psychologists,
physical therapists,occupational therapists anyone
(02:16):
in the health field that is thatworks with people with
rheumatic and musculoskeletaldiseases is able to come to this
conference and learn.
Oh, also pharmacists oftenunsung heroes.
So they have separate tracksfor people who are MDs or
doctors versus the allied healthprofessionals.
Historically, they haven'tinvolved patient partners as
(02:37):
well as they could have, and Ithink that there's been a big
push in the chronic illnesscommunity to involve what they
call patient partners, orpatients who are the experts in
their own care, in these events,and so Jen and I were able to
represent the rheumatologypatient community as Rheum
Champions, which, with aaffiliated organization, the
Rheumatology Research Foundation, rrf.
(03:00):
They're the foundation thatraises money for research in
rheumatology.
Speaker 1 (03:06):
That's a lot of acronyms.
That's a lot of acronyms, socan you share a little bit more
about?
We've covered the acronym baseright.
We got some new wrinkles on ourbrains.
What has it meant for you guysto be Roam Champions?
Speaker 2 (03:19):
Yeah, do you want to go first?
Sure, yeah, sorry, yeah, Ithink that for me it is just
intrinsically empowering to beinvited to share the patient
voice and it's been a reallypositive experience because the
researchers I think that a lotof them this is just my
impression from talking to them,but they are very cerebral and
(03:40):
they're looking at databases andspreadsheets and sometimes they
maybe have were motivated tojoin the research field
initially because they want tohelp patients, they want to help
advance the field Right, andultimately, everyone's trying to
understand how these diseaseswork so they can find a cure.
But sometimes they get.
They get.
You know, the day to day oftheir work is very tedious and
(04:02):
they don't get to actually talkwith patients that often who are
the ones that are actuallybenefiting from their work.
I mean, I think, jenny, maybeyou felt the same, I don't know,
but share your opinion but theyjust were really embracing of
us being there.
It wasn't at all.
Oh well, we have PhDs and we'resmart.
They were enthusiastic aboutour participation, so that was a
(04:22):
really positive experience.
Speaker 3 (04:24):
I agree, and you know I've talked to Andy before
about all the anxiety that Ifelt there and I think that was
pretty fresh from me.
Coming back Now I can reflectback and think about all the
positives instead of thinkingabout how awful I was feeling
while we were there, because yougot to see firsthand.
Oh my gosh, Jenny fell apart.
But besides all of that, what'snice is it's not like people
(04:45):
walk around with a tag on theirshoulder saying I have a PhD and
I have this and I have that.
Nobody's judging.
We're all there because we wantto learn, we want to engage.
It's an incredible experience.
It is overwhelming and thereare a lot of people, but it's in
such a good way and I rememberas we were giving bracelets out
(05:05):
to people, they'd get so excitedand they'd want to put them on
and get their picture taken andyeah it was so much fun I loved
it.
Speaker 1 (05:13):
I love it, so there's food there, yeah yeah.
Speaker 3 (05:17):
Yeah, it's kind of hard to fight sometimes bananas
were we were, yeah, different.
Speaker 2 (05:23):
So the conferences I've been to numerous of these
conferences and I will say itreally depends on the which site
they go to.
They rotate between the eastcoast, west coast, midwest, like
philadelphia and san diego aremy favorites because they have a
lot of good food around them.
Dc was not the best for food,so, yeah, but we went to some.
(05:43):
When we went to these sponsoredevents like the Rheumatology
Research Foundation lunch, wegot food.
But when we were trying to findour own snacks we were pretty
unlucky.
We had the whole quest to tryto find like literally one
banana and we couldn't findbananas.
They were just sold out.
Anyway, it was very dramatic.
Speaker 1 (05:59):
So I'm a foodie, I'm a foodie and I'm living
vicariously through you guys.
And you gave me a great seguebecause you mentioned that you
were at the RheumatologyResearch Foundation Awards
Luncheon.
Two, for this is a twoferquestion what was the food?
Was it delicious?
Was it anti-inflammatorybecause it's rheumatology, was
it anti-inflammatory and how didit feel to be a part of that
(06:21):
awards luncheon?
Speaker 2 (06:22):
yeah, I, we were both nervous because we had to speak
and so we were kind of likehaving that pre-speaking jitters
where your appetite goes away.
But I think it was like chickenand some quinoa was pretty
healthy and I actually thoughtit was.
Yeah, it was really good.
Um, and yeah, the awardsluncheon is where they get these
research awards, so basicallygrants to keep performing
(06:44):
research.
I mean it was a strange timebecause it was, I think, one or
two weeks after the election.
By that point we knew who wasgoing to be in power and that
they were saying that they'regoing to do a lot of funding
cuts.
And I actually think there wasa lot of the researchers.
We all everyone wanted to bepositive and celebrate the
research wins that had happenedand the advances in autoimmune
(07:07):
understanding and research andmedications.
But it was a little bit scarytoo, because I think when we got
into longer conversations withindividuals, they were like well
, I don't know what's going tohappen to my lab, my scientific
lab, if it's funded by a sourcethat's going to be like cutting
off my funding.
So kind of a mixed bag, I wouldsay.
Speaker 3 (07:25):
Yeah, and I agree with Cheryl.
We got in there early as wewere prepping and they bring out
the salads and the drinks.
But who wants to go eat saladbefore they're going to get on
stage, because the last thingyou want to do is have lettuce
sticking out of your teeth.
And yes to my idea to Cherylwas hey, let's start out with
like some kind of comedy, justbecause that might help loosen
(07:45):
my nerves.
It was great.
I loved that.
We did that and it worked outwell.
They loved it, they loved thepuns.
But all I could think is whatif I would have been standing
there with lettuce hanging outof my teeth?
Then, of course, the meal cameand it was chicken and it was
salmon and it looked sodelicious.
But again, I had nerves and soI ate what I could, and it was
delicious.
There was asparagus too, Ithink.
I think, yep, yep, there was adessert.
(08:07):
I never got to touch it, Idon't even know what it was, but
the meal itself was delicious,yeah.
Speaker 1 (08:12):
Were there any moments during the event that
really stood out or inspired youpersonally where you left and
you were like.
That lit a fire in me.
Speaker 2 (08:20):
I think what we ended up doing was we presented, we
highlighted a couple ofresearchers and said why their
work was important to us.
And I know because I saw ithappen to Jenny too.
Right after we spoke, whenthere was kind of like a mix and
mingle time for people to talkto each other, the researchers
came up to us.
We actually weren't expectingthis.
They were like one of them hadtears in her eyes because she
(08:42):
her research is all aboutpregnancy and I said this is
important to me because I had apregnancy like 10 years ago with
rheumatoid arthritis.
It was a planned pregnancy butthere weren't a lot of solid
guidelines and research backthen and it's already gotten so
much better for people now whoare experiencing pregnancy.
And she had tears in her eyesand she was so grateful that we
were interested in her researchand it just reminded me that the
(09:06):
researchers need to see thefaces of the people they're
actually helping.
It's so gratifying for them andit's gratifying for us to see
who's helping us.
I think so often as patientadvocates, there's a lot of
times we vent to each other,right?
People vent about this doctordidn't listen to me and this
doctor medically gas lit me andthose are all like, like real
I've had that happen andlegitimately like really
(09:26):
difficult situations to copewith.
But it's also empowering tocounterbalance that, to remember
that there's also the positivesof people out there who are
working till midnight in the labtrying to find a better
treatments for us.
So that that was.
That was the key moment.
I guess the woman coming upwith tears in her eyes I didn't
know it was going to touch herso emotionally.
How about you, Jen?
Speaker 3 (09:47):
Echo that too, the hugs that we got from
individuals afterwards or eventhe group at our table.
I loved the group at our table.
We had fellows right and theywere so sweet.
We had this incredible youngman recording the video for us.
We got a picture with him andwe got to cheer on a couple
people at our table as they weregetting their awards and the
(10:08):
excitement on their faces.
You can feel it and you want toclap and cheer to me and be
proud of them, because this isthe future.
These are the people that wantto help us.
They genuinely care and they'relooking at us with care.
That means a lot to me to havethem look at me like a real
person and truly care about me.
Speaker 1 (10:25):
So while you were there, you guys sat through some
pretty empowering sessions.
Jenny, I'd love to hear yourthoughts on chasing Zs rheumatic
disease.
How was that session?
Speaker 3 (10:38):
Chasing Zs.
It was pretty cool.
A girl that I know she workswith AI arthritis.
She shares about her illnesswith lupus.
Her name is Layla and her uncleis a rheumatologist and he was
one presenting at the Chase andZ's with a few other people that
I didn't really know as well,but it was super exciting to
hear them talk about how sleepis so important and how it can
(11:01):
be related in disorders withpatients of rheumatic disease.
They went through and talkedabout it, about how important it
is for them to teach us sleephygiene, and sitting there
thinking, oh my, yes, sleephygiene is such a huge topic
that we don't always talk about.
And does a family doctor talkto you about that, as they're
telling you you need to see arheumatologist?
(11:22):
Probably not.
Did my rheumatologist ever talkto me about it?
Not really.
It was actually a life coachthat talked to me about it and
once I started putting in bettersleep hygiene, I noticed I
started feeling a lot better anda lot less pain it was.
I was controlling it better.
It really resonated with me andmade so much sense.
I wanted to record every secondof what they had to say.
Speaker 1 (11:43):
Cheryl, you were a part of the session.
Was it called AddressingAbleism from the perspective of
the patient?
Can you walk us through some ofthose key points?
Speaker 2 (11:59):
It was really great.
I love talking about ableismand I didn't myself hitch this
idea.
So you have to apply to be aspeaker typically, but someone
else nominated me, which wasreally a honor, right?
Someone said I think I've heardher talk about this on social
media and I think she'd be agood speaker on this topic of
ableism.
So if you haven't heard of whatableism is, honestly I don't
think I had heard until I was onsocial media but it's
discrimination against peoplewith health conditions or
(12:22):
disabilities.
Racism is discriminationagainst people of different
racial backgrounds.
That's what ableism is againstpeople who either have a visible
or invisible disability orhealth condition.
I I was asked to share myexperience as a patient and as a
occupational therapist.
I pointed out basically,there's a lot.
There's some obvious, external,overt examples that are very
(12:47):
obvious.
They're very obvious.
Sometimes I'll get a comment ona tiktok video of and I'm um,
I'm using a mobility aid.
I'm actually usually because mymy small joints are more
affected with rheumatoidarthritis than my big joints, so
I don't have any issues withmobility, but I have issues with
my fingers.
I'll be wearing a compressionglove or using adaptive
equipment.
Someone's like you're ugly oryou.
(13:07):
You know these.
You shouldn't use those things.
You're weird, obvious exampleswhere you are less than because
you have a disability or healthcondition.
But the ones I was moreinterested in is the ones that
are more subtle.
They're things like thepressure to define a normal life
as just a healthy orable-bodied life and the
(13:28):
pressure that we as healthprofessionals I'm both a health
professional and a patient, so Ilike feel like I'm an
interpreter, sometimes talkingto doctors or other health
providers about this stuff, anda lot of times they'll say stuff
like well, you can have anormal life with these
conditions, and they don'trealize that's like a subtle
form.
Well, when they're saying it,yes, normal life is a catch-all.
(13:52):
That is saying a life that isnot ruled by chronic pain or
your disability is not going tobe the focal point of your life.
You can still do the thingsthat you want and love to do,
and that's a really positivemessage.
But we have to be careful,right, I said this a lot more
eloquently because I had allthese slides and stuff to keep
me on track, but basicallysaying, when we say the normal
(14:16):
life that most providers aretalking about in rheumatology is
they're defining normal ashealthy or able-bodied.
I actually used this examplewhen I was pregnant and people
were like, oh, as long as it'shealthy.
But okay, so what if it's nothealthy?
What are you saying?
Like my kid's going to be lesslovable because they're not
healthy?
Like, obviously, they're justsaying we all wish and desire I
mean, I desire to be, to havegood health, because having poor
(14:40):
health is painful and I don'tlike pain, but it's not a choice
a lot of people get to have.
And we should still beinspiring our patients to say
that you can have a good lifeinstead of saying you can have a
normal life.
Do you know what I'm saying?
That kind of thing.
So again, sorry this is not likethe most coherent, but I also
shared my own personal journeyof like feeling this pressure to
(15:00):
like overcome my arthritis orhave the hero's journey right
when I like climb the mountainof my illness and then like
surmount it.
I've even been asked when I'veshared my story publicly.
Someone said can you share howyou overcame it?
And I'm like people don't havea good script for like what a
chronic illness is.
I'm not overcoming it, it'sgoing to be here until there's a
(15:21):
cure.
But I'm living with it, I'mliving alongside it, but at
first I felt like I was failingbecause I didn't overcome it or
heal it, or beat it or defeat it, or like I'm an arthritis
warrior, like there's all theselike subtle pressures we put on
people and in the ways that we,as health providers, encourage
or reward patients right forimproving constantly.
(15:46):
It's much more complexrelationship than it seems at
first.
And one last little point I'llsay is a phrase I hadn't heard
till I was on social media a lotwhich is called inspiration
porn.
I hope it's okay to say that,but it's not actually talking
about real porn.
We're talking about the idea ofpictures of a person in a
wheelchair and it's the onlydisability in life is a bad
attitude.
(16:06):
And if they can do it, what'syour excuse?
You know, and it's the using ofthese images by able-bodied
people to make themselves like,to force the disabled population
or people with disabilities toconform to the able-bodied
standard, instead of sayingthere are many ways of having a
beautiful, full life.
(16:26):
Not everyone who is awheelchair user is having a
horrible experience, or also not.
They're not only worthy ifthey're able to like, do five
pull ups in the wheelchair.
It was a really great sessionand they were mostly allied
health providers meaningnon-doctors in there, because
there was a bunch of other highprofile sessions at the same
time, but there were some greatsocial workers and other people
(16:49):
that had great questions andstuff like that too.
Speaker 1 (16:51):
You were also part of another session.
It's not just joint pain.
Speaker 2 (16:55):
Yes, tell me a little bit more about that.
Yeah, that one was a littlemore straightforward, but this
I'm going to give EileenDavidson, our fellow rheumatoid
arthritis patient advocatefriend, some credit here.
She came up with the idea to dothis session as a
multidisciplinary session with awith a rheumatologist, and the
idea was people and even healthproviders tend to just look at
(17:17):
the joint symptoms of conditionslike rheumatoid arthritis and I
I helped a lot on this becauseI had done my own like podcast
episode on this too and dividedit all.
This said, let's have a wholehour-long session on just the
symptoms that are outside ofyour joints.
So we divided it into fatigueand then brain fog or cognitive
dysfunction, and then mentalhealth so concurrent anxiety and
(17:41):
depression that are veryprevalent in the rheumatoid
arthritis community and sleepissues, sleep disruptions.
We had a really amazing sleepspecialist from the University
of Michigan who's done amazingresearch in the effect of lack
of sleep on inflammation in yourbody and how, like Jenny
mentioned earlier, gettingadequate sleep can be so
(18:02):
positive for your inflammationlevels.
And we also talked about theimportance of interventions to
help reduce pain, fatigue andbrain fog.
So things like exercise andnutrition were two of the big
ones.
So it was great.
People were really receptiveand that one was pretty packed
with doctors and allied healthprofessionals too, so it's
literally doctor just tellingthem to just ask your patient
(18:26):
about other symptoms other thanjoint pain.
It's so simple, but often we'reonly asked oh, how are your
joints, how's your finger?
Can I feel your finger?
Can I feel your knees?
And it's like okay, can I alsotell you about the fatigue and
how that's affecting my qualityof life.
Speaker 1 (18:39):
So both of you have been these super advocates.
You guys are phenomenal in theadvocation space and even
superheroes like known in thecommunity, superheroes for the
rheumatology community.
How do you see these kinds ofevents and these discussions
(18:59):
shaping the future of care andsupport for people living with
chronic illnesses.
Speaker 3 (19:01):
Honestly, I feel like it's going to continually help
patients feel seen and caredabout, which is crucial, but
it's also so exciting to seethat they actually are working
really, really hard.
We don't see it.
We don't see all the behind thescenes things that they are
doing to make our lives better.
And you know, Cheryl, I knowthat you got to go to a few more
(19:22):
sessions than I did because Iwas there a very limited amount
of time, but I went with theArthritis Foundation to the
post-ACR.
There were people there thathad either been to ACR or they
got to watch it online.
They were presenting on it,Getting to hear more.
It was amazing, and one of thegals was so passionate In fact I
(19:43):
was going to give you her name.
I asked her if she'd be on thepodcast.
She was such a gifted speakerand passionate about what she
was talking about.
Andy, it's one I told you abouttoo.
It was about POTS, and theperson that originally had put
this together and presented itat ACR was saying if you in your
professional settings are notasking your patients about this
and if you are not diagnosingthis, there's something wrong,
(20:06):
because this is happening morethan any of us want to admit.
So stop trying to direct it toa different physician.
You should be diagnosing this.
You should be learning moreabout it.
And that struck a chord with me,and I don't even have POTS,
that's so funny.
Speaker 2 (20:19):
You say that, Jenny.
It's striking a chord.
Yeah, same with me.
Speaker 1 (20:22):
I was like it's striking a chord with Jenny.
It was very beneficial for Andybecause it was helping me
connect the pieces as to why Icouldn't swallow.
That is one of thecomorbidities that come with you
have POTS and if your POTS isout of control, the dysphagia.
And that was what has beenhappening to me for almost three
years.
I had been getting kickedaround for almost three years
(20:42):
where they're going, it's notthat, it's not that.
And then today I got to see mycardiologist and I'm like is it
this?
And he says you're my 1%.
He's like I treat POTS all thetime but I have never come
across someone who has lostweight like you, who lost their
hunger cues, who is having thedigestive upset and all of the
things.
He said you are my 1%.
(21:04):
I don't have the answer, butI'm committed to helping you
find the answer, because I don'tthink anybody has the answer
for the 1%.
We don't have the answer forthe 99.
Speaker 2 (21:15):
Was that the one called stirring the pots, long
COVID and beyond?
Yes, okay, did you get to go tothat one?
Yeah, that's so funny becausethat was the one I had
identified as a reallyinteresting as well, because
they were also talking about.
No one knows for sure exactlywhat is happening with long
COVID at the cellular level, butapparently they're finding
(21:35):
autoantibodies with people withlong COVID at rates higher than
people without long COVID.
So they're theorizing that itcould be, you know, an
autoimmune process where yourimmune system, after having
COVID for some people, ismistakenly attacking your
healthy tissues.
I think that that is a reallyfascinating development and just
(21:57):
in trying to keep an eye on it,you know, to see if that's
going to lead to maybe treatmentfor long COVID.
I don't have long COVID myselfeither.
I don't have a diagnosis ofPOTS.
I do have for sure orthostatichypotension where when I stand
up I will get lightheaded andstuff like that.
So it's just one potentialsymptom of pots from what I
understand.
(22:17):
But I just think that so manyof us are living with
comorbidities.
Right, it's not just rheumatoidarthritis, it's not just a show
grands or um pots.
It's like a lot of us havemultiple overlapping conditions,
so the more we can learn aboutthose comorbidities.
Hopefully managing those canhelp us improve our other
conditions too.
Speaker 3 (22:37):
I pulled up my slides from some of the ones that you
and I presented on Cheryl.
If you don't mind, Andy, I wantto dive into one of the people
that we shared on, because Iwish she had several, several
sessions, but I couldn't make itto any of them because they
were either the days I wasn'tthere or I was already committed
to something else.
Her name is ChristinaCharles-Schumann.
(22:59):
I wish that she was on socialsbecause I feel she would be a
wonderful one to watch and gleanfrom her research.
It's about approach to managingrheumatoid arthritis in the
setting of cardiovasculardisease.
That one has been so importantto me.
I talk about this all the time,but I have a cholesterol issue
that they've never really beenable to figure out why?
(23:21):
Because even when I was 98pounds, I had high cholesterol.
So they were like, okay, itdidn't matter what I was doing,
it didn't matter what I waseating, it didn't matter if I
was exercising.
My cholesterol was sky high,and so to get to hear from her
personally at sessions wouldhave been amazing.
But I was glad to at least beable to read about it and to
(23:41):
also share about her award atthe luncheon.
Speaker 2 (23:48):
Lupus I don't know if you might have heard this, but
the American College ofRheumatology one of their jobs
is to put out like theseclinical guidelines, which are
documents that are updatedtypically every five years.
That are what the doctors useto determine like what's the
state of the art or what's thelatest evidence pointing to as
(24:08):
the best interventions.
So these were updated in 2024for lupus specifically, and
there was a lot of like chatterin the medical community about
there being, you know, maybe,some new medications out there.
I don't have lupus, but theywere talking about especially
like the importance of tripletherapy, so hydroxychloroquine
and there's a couple that youcan look these up.
(24:31):
This is all public information.
It's just it's a lot of thescience stuff.
That's kind of like way toomany syllables for me, but that
was exciting to see some updatedresearch there for lupus.
Speaker 1 (24:43):
So were there any other sessions or topics that
you're just like?
Hey, everyone needs to knowabout this outside of the ones
we just talked about.
Speaker 2 (24:52):
I think I would say that for brain fog, I think that
, or cognitive dysfunction, thatthere are a lot of people that
were really resonating with theidea that we need better and
more studies on the role ofinflammatory diseases like
rheumatoid arthritis, how thoseaffect your brain, because brain
(25:14):
fog can sound like such a cutething, right, you're like, oh,
it's brain fog, like a littlecloud, but it can be
debilitating.
It can lead to you having ahard time focusing on maybe even
safety issues, like withdriving, potentially taking care
of children, being able toremember that there's something
stovetop.
There was a real call to actionthere.
(25:35):
Second thing is, I went to asession that was a from a pain
chronic pain researcher, drAfton Hassett, also,
coincidentally, from theUniversity of Michigan.
She has a great book calledChronic Pain Reset.
Yeah, and she's really great.
I know, sometimes it seems likethese things are so simple, but
in terms of, okay, what's thetakeaway that someone listening
(25:55):
to this podcast episode couldtake?
She talked about the importanceof she called them scheduling
positive activities, right?
Is that what you want to say?
Yeah, positive activity,scheduling, scheduling, it's so
simple, sounding right, but evenif you're in a lot of pain to
say what's something that canbring me joy today?
What's something small.
Is it calling a friend, or isit listening to music?
(26:17):
Is it smelling something that Ireally love, like putting some
lavender, you know, in my bath,or something like that?
I thought that was a great idea, something I've started
thinking about, like micromoments, small little moments of
joy, trying to schedule thosein the day rather than just
waiting for them to happen.
Did you pick up her book?
Yep.
Speaker 3 (26:36):
It's on my desk.
I sure did too, and my husbandwas like, oh great, another
chronic illness book.
It's great For anyone listening.
I actually added it to myAmazon Spoonie list, so if you
want it.
I'm not an affiliate, I don'tmake money off of it, but I love
sharing my list of all myfavorite finds which you can
find the beautiful Andy Byers onthere.
(26:56):
I have quite a few of her bookson there too.
Cheryl, if you write a book,you're going on.
Speaker 2 (27:01):
Okay, it's on my to-do list, my life to-do list.
Speaker 1 (27:04):
So, ladies, how can our listeners get involved in
advocating for more awarenessand resources for rheumatic
disease?
Do you have any favoriteorganizations that they could
support or specific actions theycould take?
Speaker 3 (27:17):
to just start the conversation, you can look at
people like Cheryl like I did afew years ago and be, oh my gosh
, I can never be one of them.
They're so famous I can't dothis stuff.
That's what we do.
That is seriously what we do.
We sit on the sidelines, we putyou on this pedestal and you're
a real person.
You are and you're a fun person.
But what you need to do when youwant to advocate is just start
(27:39):
using your voice.
You have to start somewhere.
If that means starting anInstagram account that is set up
for your specific conditionsand sharing about it and
reaching out to people, that's agood start.
But then, when you want tostart diving into other things,
don't be afraid.
I've asked Cheryl questions amillion times.
I've asked all kinds of otherpeople questions about what
(28:01):
they've done, what they enjoy,who they like to work with.
It's okay to ask thosequestions, Because not all these
organizations will just jumpinto your feed and say, hey,
want to work with me.
It doesn't work like that.
A few of them do, Like the roomchampion thing.
They reached out to us and itwas such an honor.
It was such an honor, but itdoesn't always work like that.
(28:22):
So what I would?
Speaker 2 (28:38):
say is just start somewhere and don't be afraid to
talk to people.
Advocacy every nonprofit that Iknow of for specific chronic
illnesses, whether it's likeDysautonomia Association or, you
know, ayurvedic Foundation,creaky Joints they all have a
like system for onboardingpeople into advocacy.
You don't have to figure it outon your own.
In fact, I don't get nervouseasily, and I was really nervous
(29:00):
the first time I talked to likean elected official because I
don't know how the governmentworks.
I don't remember, but literallyit doesn't matter what you know
about the government.
They just need to hear yourstory.
They need to hear how insurancebarriers, for example, have
affected you and your quality oflife.
If you're really a governmentgeek or into that kind of thing,
I have been flown out toWashington DC through some of
(29:23):
the donation dollars to thesefoundations.
You don't have to do it all onyour own, so that's really cool.
The second one, though, isbeing I'm a heart teacher cater
person, so I love volunteeringat in-person or now virtual
events, educational events, or,for example, in Washington State
(29:44):
, where Jenny and I both live,there's an annual family camp
for kids with arthritis andjuvenile inflammatory disease.
They're always looking for morevolunteers.
You can do anything from makingpainting decorations for the
room that they hold the summercamp in the rooms.
These are all grassrootsorganizations.
(30:06):
From my experience they couldalways use a hector set of
helping hands.
So the third thing is that forawareness, you can just start
where you bloom, where your plandid start.
Either if you're a social mediaperson like I am, start and you
become and you are identified,that you're comfortable with it,
start sharing about yourcondition, they connecting with
other patient advocates, or, ifyou want to Gosh.
(30:29):
I mean, there's so manycreative ideas.
I did the Jingle Bell Run forarthritis in Seattle and there
was a whole.
It was so adorable.
There was a whole lacrosse teamof eight-year-old kid and it
was the kid wants more people toknow that kids get arthritis
too, and they made a team forthe Jingle Bell Run, which the
proceeds go to the ArthritisFoundation.
So just be creative and havefun with it and that will make
(30:53):
it more sustainable for youExactly.
Speaker 3 (30:56):
A lot of these have websites or you can find them on
Instagram, tiktok, all thethings and just messaging the
person that runs that account.
Most of them are very engagingand the websites even have a
spot where you can say I want tobe a volunteer for the
Arthritis Foundation, for theone local to me, I'm near Oregon
but I'm still in Washington.
I don't get to go to thein-person events with you, but I
(31:19):
can hold a virtual one.
That's okay.
Those are great things to dotoo.
The Psoriasis Foundation that'sclose to me in Portland.
They're they're very active andI do stuff with them as well.
Just reach out doesn't hurtright.
Speaker 1 (31:31):
So last final question.
Question is does andy deviate?
Does she go rogue for this lastquestion?
Does she go rogue for this lastquestion?
Do I want to do that to SherylCrow, you know, because I've
been playing.
Yeah do it, do it, do it.
So you got to have thisexperience.
(31:52):
This is Sheryl's not her firstexperience with the convention.
What is your message of hope?
So, if you had to talk to youearly in your diagnosis and you
were in your darkest moment ofyour diagnosis journey trying to
figure it out, what message ofhope or resilience do you give
your future, you about whererheumatology is going?
Speaker 2 (32:15):
Yeah, that's a great question.
I always think of hope as thedouble-sided coin, and so, on
the one side is, every yearthere's more scientific
discoveries, there's more hopefor a cure.
That's the end game, right Iscuring rheumatoid arthritis and
autoimmune diseases.
On the other side, though, isthat I remind myself that life
(32:35):
isn't my life is not perfect.
It's not going to be perfect ifthere's a cure for rheumatoid
arthritis.
So there, right, there's alsothe idea that I don't want to
hinge all my hopes for a good,beautiful life on this idea of a
cure, because there's alwayschallenges in life.
There's always going to bethings that maybe stress me out.
Certainly, eliminatingrheumatoid arthritis for my life
(32:56):
would get rid of a specific setof issues, but I think this is
maybe just my point of view ingeneral, but so I'm very excited
about the hope for a cure.
I think they're certainlyobjectively closer than ever to
a cure for rheumatoid arthritisand autoimmune conditions in
general, but on the other hand,there's also always hope in the
moment for living a good life,with whatever challenges are
(33:20):
coming your way, and findingagain those pockets of joy and
finding those micro moments ofpositive activities
(33:47):
no-transcript yeah 100%.
Speaker 1 (33:52):
Yeah, I was just staring at you back, waiting on
you to answer the question.
Speaker 3 (33:56):
So this is where I admit that I'm having a brain
fog moment and I don't evenremember the question, so you
know what we have.
Speaker 1 (34:02):
that so you talking to younger you a message of hope
and resilience about the futureof you managing your rheumatic
situations and the future ofrheumatology.
What do you tell you?
Speaker 3 (34:16):
young you.
Well, first of all, I wouldtell young you, young me, I
would say your life's going tobe a little different and that's
okay.
It's going to scare you.
You're going to be a mom takingcare of three middle schoolers
and you're going to think yourlife is over and you can't do
the things for those kidsanymore, but you still can.
And with this changed life,you're going to meet incredible
(34:36):
people, lifelong friends, peoplethat are going to change your
life and that will make youthankful.
It's crazy to say I know I soundcrazy to people that I would
not change my life Because Idon't like pain.
Who likes pain?
But it's made me who I am todayand for that I am grateful.
I would never take it away.
I like the compassionate personthat I have become because of
(34:59):
what my life has done to me.
It is a beautiful thing that Iwould never take away because I
am who I am and I love you guysbecause of it love the slowness
that my life forced on me, thestillness I used to be so mad
about it.
Speaker 1 (35:16):
I appreciate the quiet moments.
I appreciate the stillness.
I appreciate rest.
You know we fight.
We fight naps as teenagers andlook forward to it in your 40s
Okay, because I love a goodjuicy nap.
So I love a juicy nap.
Well, ladies, thank you forspending some time with us and
for taking the time to shareyour experience.
(35:37):
I'm going off script.
So this is me and you right.
I appreciate what you do, andif nobody tells you today that
they see you, I see you and I amglad that you do what you do
because what you do gave.
And if nobody tells you todaythat they see you, I see you and
I am glad that you do what youdo because what you do gave me
my voice and it's the reason whyI do what I do and why I can do
it with a bigger voice.
And when I don't feel like I'mstrong enough, I have amazing
(36:00):
women like you that go.
Hey, I'll hold your hand.
Here's a spoon where I went tothis thing and this may help.
I am grateful for you and youguys are more than champions to
me, you'll always be more thanchampions to me.
So with that y'all I done gotsweat from my eyeballs and we're
going to go ahead and wrap thisup To everyone that is
listening.
Please stay tuned for moreepisodes and remember it may get
(36:23):
dark, but you're not alone.
You have some amazing sistersthat would just love to hold
your hand and send you a virtualhug.
We are in this together.
Until next time, don't forgetyour spoons.
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