September 1, 2025 • 39 mins
Chronic illness transforms not just our bodies, but our entire emotional landscape. What happens when persistent physical pain collides with mental health? How do we find joy when our bodies seem determined to hold us back?
"Mind Over Misery" brings together a diverse panel of chronic illness warriors who open up about the rarely discussed emotional sides of their health journeys. From polymyositis and lupus to arachnoiditis and complex regional pain syndrome, these guests navigate vastly different diagnoses but share remarkably similar emotional challenges.
The conversation begins with a profound exploration of grief – not as something to rush through, but as an intentional process essential for healing. As one guest powerfully frames it: "The level of pain needs to be matched by the level of intentionality." We hear how each person navigated the devastating loss of their former self and discovered unexpected gifts amid their suffering.
As the discussion deepens, our guests share their personal toolkits for maintaining emotional equilibrium during symptom flares. From the endorphin rush of gentle movement to the comfort of loyal pets, these practical strategies showcase the resourcefulness chronic illness demands. Most striking is their collective wisdom about balancing optimism with honesty – finding ways to acknowledge suffering authentically while still nurturing hope and resilience.
What emerges is a masterclass in transforming adversity into growth. Rather than pursuing toxic positivity, these warriors demonstrate something more nuanced: a hard-won ability to embrace both the darkness of chronic illness and the light of who they've become because of it. As one guest reflects, "I am thankful for my illnesses because they've made me a better person."
Whether you're battling health challenges yourself or supporting someone who is, this episode provides invaluable insight into cultivating resilience when your body feels like it's betraying you. Ready to discover how to develop the mental fortitude that chronic illness demands? Listen now and walk away with strategies that can transform your relationship with pain.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters podcast.
This is a powerful episode ofMind Over Misery.
Today we are diving into theemotional side of chronic
illness, the mental healthstruggles we don't always talk
about and the resilience ittakes to keep going.
Grab your favorite cozy drinkand join our panel as we unpack
(00:20):
grief, growth and the mindsetshifts that help us rise above
the misery.
Thank you all for joining.
Thanks for having me.
Speaker 2 (00:27):
Thank you so much.
Speaker 1 (00:28):
Thank you.
If your chronic illness had atheme song, what would it be
Right?
Speaker 2 (00:34):
away REO Speedwagon.
Roll the Changes.
Speaker 1 (00:37):
Excellent, that's a great one.
Speaker 3 (00:39):
I'm going to have to go with Bon Jovi's Living on a
Prayer.
Speaker 4 (00:42):
Another good one.
Speaker 3 (00:43):
That's great Yep with .
Speaker 4 (00:43):
Bon Jovi's Living on a Prayer Another good one.
That's great.
Yep.
Scott Stapp, who was the leadsinger for Creed, went out on
his own and he did an album.
After his recovery from a drugaddiction.
He wrote a song called Purposefor Pain, and that's my theme
song.
Speaker 1 (00:56):
Oh, okay, you've got to listen to it.
I will, and Lisa how about you?
Speaker 3 (01:02):
I don't know the original singers, but it's Keep
on Truckin', baby Ooh.
Speaker 1 (01:07):
Now I don't know if this would necessarily be my
theme song, but I did a video Iguess a parody to a Green Day
song not long ago I don't knowif any of you saw it and I kind
of changed the lyrics around andof course I'm going to have a
(01:31):
mind blank on what the song is.
Speaker 2 (01:33):
If I remember, I'll let you all know, but I love
Green Day, among many others.
I'm going to ask you all onemore Describe your chronic
illness using only emojis.
You know the two masks fortheater dramatically dramatic,
differently, differentexpressions, and that's what
it's like.
There are stark contrasts inthe journey.
Speaker 1 (01:46):
Would you use any other emojis?
Speaker 2 (01:48):
The next reply is this I'd pick them all because
crying feeling sometimesunstoppable.
For example, I recently had abreakthrough after working on
healing one particular traumafrom going through surgeries one
, two and three and that's mademe feel.
Lately I've been able to tapinto some new energy.
But virtually every emotion isin the mix.
Speaker 3 (02:24):
Yeah.
Speaker 4 (02:31):
I like that You're coming up with some good ones.
Yeah, mine's gonna be steppingon a nail with electricity going
through it.
Speaker 1 (02:34):
I'm feeling it right now actually I hope we're gonna
be a distraction for you oh yeah, and when I get my pizza, for
sure.
Speaker 3 (02:42):
Definitely, definitely, praying hands,
because I'm constantly reachingout to whosoever out there
Spirit, dangers, whatever canhelp me.
And then hearts and, likeStasha said, sprinkles of magic,
glitter, stars.
And then also, like Rick said,the sad emoji, the frustrated
(03:03):
emoji, the crying emoji.
So I think it's all of them.
Speaker 1 (03:08):
I actually pulled up my most used emojis and I
figured I'd share those with youall, because that probably just
goes with me, right, right.
So I have the one where you'resmiling but it looks like
sweat's coming down.
I use that one a lot withpeople I don't know why, smiling
, but it looks like sweat'scoming down.
I use that one a lot withpeople, I don't know why.
I use the melting one where youkind of have this weird face on
(03:29):
look on your face and you'remelting into the ground.
I use that one quite often.
That's my way of saying I'm notdoing so great, but I'm trying.
The one where you have yourface plant I use that one.
Tears, I have some happy thingsin there too.
I have some happy things inthere too.
I've got flowers, palm trees,strawberry.
(03:49):
I like to talk about food a lot.
I hope that helped loosen usall up a little bit before we
dive into these deeper questions.
The first one is living withchronic illness often means
grieving the life we once had.
How have you navigated thatemotional journey?
What helped you the most inmaking peace with your new
(04:09):
normal?
Speaker 2 (04:10):
I'm always ready.
Speaker 1 (04:12):
Okay.
Speaker 2 (04:17):
And I mean this in a positive way.
It's because I live it everyday.
And for those of you who don'tknow me, surgery number seven on
my left knee all started from afootball injury in the last
game of my senior high schoolfootball season.
Surgeries one, two and threeback before I was 20.
I had a fully arthritic kneefour, five and six in my late
season and in 2019, surgeryseven, which has left me my knee
(04:37):
in a state of trauma.
I experienced, for my baselinepain, a dozen or two instant
flashes of pain, generally inthe six to 10 range, and so it's
a daily thing.
I haven't found any relief.
I live it daily.
I've got answers to questionsand I've made it a passion.
I felt really strongly thatI've got to prepare myself and
(05:00):
get answers to questions, tosurvive and thrive in my own
unique way.
So part of the answer to thequestion about grieving is to be
fully intentional.
Fully intentional.
One of the things I learnedthrough surgeries four, five and
six is that the level of painneeds to be matched by the level
of intentionality.
I'm a lion of intentionality inso many ways in my life.
(05:24):
I look at grieving as somethingto do very deliberately because
so much good comes from it.
I practice probably every daysome measure of good grief and
I'll conclude with this thought,because this is a powerful
question.
We could spend the wholeafternoon talking about it.
I found that the benefits ofgrieving and in doing it very
(05:44):
intentionally, found that thebenefits of grieving, and doing
it very intentionally, bringsabout a lowering of cortisol
stress.
It lowers the pain.
So I know what it's like not todo it and the pain that comes
from that.
Speaker 1 (05:56):
I think that's so true, thank you Hi.
Speaker 4 (07:24):
So for me, my journey started back in 1982 when I had
my accident.
It took me years of sufferingto get a diagnosis.
In fact, my diagnosis came in2014.
And when I read the MRI report,it said arachnoiditis and all
these other things that I knew,with the exception of
arachnoiditis.
I started diving in doing myresearch and life got dark.
It was very tough because it'ssuch a rare disease and when
(07:47):
your neurosurgeon comes in,gives you the diagnosis and he
hangs his head and shakes it andsays I'm sorry, you know you're
in for hell, but I'm soresilient because of everything
that I've been through in mylife.
It didn't take long for me torecover from that and as I did
my research, there was verylittle on the internet back then
about arachnoiditis.
There's much more now.
There are groups on Facebookand I resigned myself to try to
(08:12):
become the face of the disease,which it has no face.
I have quite the story to tell.
As you know, I played a part insports history and that kind of
put me on the map.
I've been telling my story onpodcasts and just the other
night actually Tuesday I was ona call with four other gentlemen
that have the same disease.
It's called brothers inarachnoiditis, and they all
(08:34):
agreed with me that we need aface and I would be a good one.
So I'm not looking for theattention, but I am trying to
put forth an effort to showpeople that there's life without
medication, even though youhave one of the most painful
diseases.
I suffer daily, but I have gooddays, bad days and survival
days.
The good and the bad days Itake advantage, I make life
happen, I push through the painand I tell you what I'll be 63
(08:57):
this summer.
I've suffered since I was 20,but I feel better than ever.
So I've really come to termswith it and I embrace it now.
Speaker 2 (09:04):
It's intentionality in action right there.
Thank you, yeah.
Speaker 1 (09:07):
And, honestly, what I think is there's a lot of
groups out there that women getpart of right To talk about
chronic illness and chronic painand all that, but I think there
needs to be more options formen out there.
You deserve some guys to talkto.
Speaker 4 (09:22):
Men in general aren't really good at sharing their
feelings, so maybe that's why.
But yeah, I found this groupand it's really helped.
It's something I look forwardto every week.
Talking to these guys, I'vemade four fast friends and when
you have something like that inyour life to look forward to on
an ongoing basis, it makes sucha difference, such a difference.
Speaker 3 (09:41):
I think that, definitely, when I was first
diagnosed, which was in 2004, Isat with that for a long time
and you know and aggrieved myplans, went over my plans for my
life.
What was I?
You know, my whole thoughtpattern had changed and getting
(10:02):
used to that plan, the newnormal, the different plan.
Then I started doing researchon how am I going to manage this
?
Can I manage it holistically?
Can I manage it only withEastern and Western medicine
options?
Can I get on meeting people?
Of course, having a spirituallife, staying working would be
important to me with anycapacity, just being in life.
(10:25):
I think those things helped.
And of course, I think exercise, to any level, any, I don't
know if it's 10 minutes a dayand you're just walking, you
know, on the treadmill, on one,moving your body somehow, is
really good for the mind ormind-body connection, and so I
keep that way.
(10:45):
Of course, diet, which is neverfun, the anti-inflammatory diet
is not the most exciting, butit does work and that's why
holidays are hard.
It's kind of heartbreaking inthe beginning and in the middle.
I mean you just can't do whatyou used to do, but then you
(11:09):
become grateful for what you cando, I think each of us have
similarities in our stories andour grieving process, but then
we have the differences,especially having different
illnesses.
Speaker 1 (11:19):
Right, I look back and when I was first diagnosed,
I was almost 32, raising threemiddle school age kids, and I
did.
I grieved hard because Ithought, wow, I'm so young, I
shouldn't be living this life.
But I also wasn't thinkingabout the fact that I was going
to learn a whole new thing.
I was going to learn that theseillnesses, they affect all ages
(11:42):
.
There's no rhyme or reason, butI am so thankful for who it's
made me out to be.
I wouldn't change a thing, ascrazy as that might sound to
people.
I am thankful for my illnessesbecause they've made me a better
person.
They've made me more loving,compassionate.
I'm checking in and embracingother people in a way I don't
think I would have done, and soI'm glad I walked out of that
(12:06):
grieving pit that I was sittingin, thinking my life was over,
because it's not.
Look at all the amazing peopleI've met.
I've met awesome people, likeall of you, and I wouldn't
change a thing because of it.
Speaker 2 (12:17):
I applaud you.
You're reminding me of a song,jen.
The lyrics go something likeI'm thankful for the scars, for
without them I wouldn't know myheart.
I forget who it by.
You can sort of interpret thator apply different words to it.
I do the same thing I'mthankful for all 13 scars.
I wouldn't know who I am todaywithout all that I've gone
(12:38):
through.
Speaker 1 (12:39):
Maybe that needs to be my new theme song Now.
I got so excited to talk to allof you that I just drove us
directly in, but I think Ididn't take the time to let each
of you tell each other what itis you live with.
Speaker 2 (12:52):
So the doctors after a sensitive surgery number seven
on my left knee in 2019, it wasa partial revision of a total
knee replacement from 20 yearsbefore and at first, revision of
a total knee replacement from20 years before and at first
they diagnosed me with complexregional pain syndrome.
Working with a pain managementdoctor last year, he believes
(13:13):
we've ruled that out.
Last week I saw a doctor.
I thought I would never talk tothe kind of doctor about
options that I never thought I'dconsider it's amputation, that
I never thought I'd considerit's amputation, and, based on
the conversation, there are afew things I'm going to look
into before going further downthat path.
But it's those random blasts ofinstant agony over time.
(13:35):
Over the past five plus yearsnow, there are over 20 pain
sensations that I experience,most of them instant agony, and
I never know when each next oneis coming.
So I live with this.
I think starting with theconversation about grief is the
place to begin.
I don't think I'm a resiliencecoach.
I've been a caregiver for over20 years and a lot of people
(13:58):
think of grief as painful andgrieving as painful, when in
fact that's not the actual pain.
That's I believe I've found inresearching it.
That's, it's processing what ispainful.
The pain is from what we lose.
We talked about just now whatwe lost in terms of our former
selves and how we're blessedwith who we are and this growth
(14:21):
of character.
There's a lot to live with andthere's a book to each of us can
write.
I'm writing the book on themethodology that I use for
resilience and that I helppeople with, called Plan to Be
your Best as you navigate pain.
In a way and here's myconcluding thought for your
wonderful question Thank you forthis time I'll never actually
(14:44):
stop writing the book becauseI've got to continuously tell my
story and express what I'mgoing through.
Speaker 1 (14:50):
I think that's powerful.
It's going to help supportsomeone out there.
Someone needs to hear yourvoice.
Thank, you.
Speaker 3 (15:53):
Thank you.
In 2004, I was diagnosed withpolymyositis and then, about
maybe six years later, lupusshowed up.
I think it was always there,but it became more prevalent.
So yeah, so lupus andpolymyositis.
Speaker 1 (16:18):
What role has mental health support, such as things
like therapy, support groups oreven medication, played in your
chronic illness journey?
Speaker 2 (16:28):
It's been absolutely foundational, it's been
essential.
I know what it's like to nothave it, such as when I went
through the first threesurgeries and recovering from
those, as well as the.
I was not prepared.
I found that, even though we gointo each of our journeys not
fully prepared, it's never toolate to become able.
(16:49):
And becoming able includesbeing really deliberate about
mental health, identifying andunderstanding the patterns of
thoughts and feelings that wehave, validating them and
expressing them.
And mental health for me meansnot going it alone.
There are.
I have a counselor that I'vehad for years that gives me an
(17:10):
opportunity to do everythingfrom what I just described
identifying, understanding,validating, even letting me
lament, because lamenting I lookat and I experience it as a
level, a level to get to anotherlevel, to express it.
So mental health is a it'snecessary.
(17:37):
It's also the keys to beingresilient, finding each of our
own unique resilience andfinding our own unique ways of
thriving Driving.
Thank you.
Speaker 4 (19:05):
I never really sought out mental health help, Though
I needed it.
A long time ago I startedsubscribing to the philosophy of
stoicism.
It was born out of a Greekphilosopher named Epictetus.
He basically said everything inlife is a choice the way you
react to somebody in line behindyou that gets angry and your
reaction is your choice.
(19:28):
You don't have to react.
You don't have to have thatknee-jerk reactions, Knowing
that.
I chose to be happy despite thefact that I suffer immensely,
Like right now.
Sitting in this car seat islike sitting in an electric
chair.
Cars are very hard for me, butI choose to put a smile on my
face despite the pain.
I recently went through adivorce.
My disease was so tough on myfamily around me my wife ended
(19:51):
up leaving and she filed fordivorce two years later.
But I chose to have a goodrelationship with her to show my
kids that you don't have to bebitter and angry because
somebody loved you for 20 yearsand they decided to leave.
We're still good friends.
She's remarried.
The first soccer game, when Imet her new husband, I
approached him, extended my hand, said Hi, I'm Steve Lovelace,
(20:12):
I'm the ex-husband and I want tohave a good blended family.
So let's get together, let'shave a beer.
It was my choice, and he cameover to the house the other day.
First thing he did was walk upwith a smile and shake my hand
and asked me how I was doing.
So the choices we make matter.
I choose to be happy, I chooseto be positive, because being
positive is so hard to do intoday's society.
(20:33):
But again, it comes down towhat Steve wants on the inside
and how he wants to reflect tothe world outside.
So that's how I deal with it.
Speaker 3 (20:41):
I definitely have talked with different types of
therapists or people that canhelp.
You know, in the beginning moreso and a lot of research on my
own of tips and tricks thatwould help me get through the
times when you know I hadalready had appointments in the
(21:01):
rest of the week.
You know, in the beginning,where you just have some idle
time, there's definitelytransformative things that they
can help.
You know therapists can helpyou with and I also think good
friends, truly good friends,that you talk with, that
understand your situation.
It's very important.
(21:22):
Family can sometimes, you know,give you a different outlook
than you might be seeing foryourself because they know you
so well.
I think it's important to havea good attitude, like Steve said
, I mean to be as happy as youcan.
None of us know really when ourexpiration date is on this
(21:45):
earth, whether you have anillness, an autoimmune and
autoimmune whatever it may be ornot, and there is no way to
know that you know.
So living each day as happy asyou can is a lot nicer than
living depressed, sad, mad,angry.
Thank you.
Speaker 1 (22:05):
I agree with all of you so much.
You're just blowing me awaywith your answers on all these
questions and I have beencounseling over the years.
I've even tried betterhelpcomTotally recommend that to people
that are looking for an easy onthe go option.
A lot of podcasts out thereoffer codes for like a free
trial for a week, and that's howI did it.
It's great because you canactually do it through an app or
(22:27):
you can do it by text or phoneor email.
Just it's to your preference,right?
That's why I liked it so much.
And having that core group ofpeople that you trust and feel
comfortable with, there'snothing that can replace that.
It is important to have thosepeople that you can go to and
say I'm a mess today, I'mstruggling, you know, maybe it's
(22:50):
because your body's in pain, ormaybe just struggling
emotionally, for whatever reason.
Having those people that cankind of reframe our thoughts,
redirect where we're going,that's just not something we can
replace.
It's something so important inmy life.
All right, our next questionwhen symptoms flare or you hit a
(23:11):
mental low, what are some toolsor even rituals that you lean
on to protect your emotionalwell-being?
Speaker 2 (23:18):
We've talked about the three steps of resilience.
It's the first component of theplan to be your best method and
the steps are to tune in.
Second is to plan and third, beyour best.
They're basically threerelatively simple steps, but
what you do in each one matterstremendously.
I can tell from what Steveshared.
It sounds like what and this isvery true with the people that
(23:41):
practice this.
When I practice it, it buildsthe resilience toolkit things
that you can go to and rely onfor, as Steve put it, making
choices and then being your best, following through.
It's in that plan step that youcreate a list of options and
make the choices.
Be your best is followingthrough on it, and some people
(24:02):
and I'm able to most of the time, rip through these three steps
to quickly realize what I'mexperiencing, how I'm reacting
to it, make a choice and thenfollow through.
He keeps repeatedly probablyripping through it very quickly
and making that choice.
Some of the things in myresilience toolkit, for example,
are along the same lines, whereI'll get to making statements
(24:23):
such as this is all a part of myamazing life journey or my best
days are ahead of me, which Iwholeheartedly mean Sometimes
getting there, especially ifbecause I experience probably
being in the pit a couple oftimes a week, especially this
past year, this past winter,when my baseline pain was about
three to four times normal for acouple of months, doing some
(24:45):
grieving, good grief, every day.
It's part of those three stepsalways getting to that point.
So it's those steps that I'vefound have been to use your
words, stasia.
I think it was central, itworks and it's something that
you can practice and rely on.
Speaker 1 (25:02):
I'm glad that you shared about that, rick, and for
the rest of you, if you haven'theard his podcast episode or
about his resilience toolkit,ask either him or I.
We can send it to you, sharethat with you.
I think that's definitely ahelpful tool.
Speaker 4 (25:17):
I'm flaring right now and obviously I can still laugh
despite the immense pain.
I'm like at an eight or nine.
The thing that helps me themost is this girl right here,
right, Thank you.
(26:29):
Thank you, yes, absolutely yes,absolutely like I said, my girl
shelbo um she, when I, when I'mflaring, she knows it.
She's right under my feet,she's rarely a foot away and
because all my pain is focusedin my right foot, I rarely have
a shoe on but I always have asock on.
She's right underneath me and Irub my foot on her and it does
(26:50):
not bother her at all.
I think it comforts her just asmuch as it does.
But that's the one mostcomforting thing that I do when
I'm flaring and my flares willlast for two, three days
straight at level 10, no sleep,especially when storms move
through.
I take no pills other than aprednisone, maybe to preempt a
storm moving through, because itaffects the CSF pressure which
(27:11):
sends me into a flare-up.
So that's really about it.
Other than that, on my dayswhere I'm just kind of hurting
you know, between a five and aseven I'm on my bike.
It's truly the only time thatI'm pain-free and I think the
endorphins are probably the bestpainkillers of all.
I always get that post-ridehigh from a ride or a walk and
that helps probably more thananything.
Speaker 3 (27:32):
That's powerful.
Well, on the bad flare days,sometimes you just need to say,
okay, I'm going to commit tobeing in bed for a day or two
and have some meals eitherbrought to you or whatever.
Sometimes you're not evenhungry and I just okay, I'm
going to get stronger, I'm goingto get better, and this is how
(27:54):
it's going to help.
But, you know, in the mediumflares I will like Steve, I
think the endorphins there's not.
If it's a yoga class, it's.
If it's walking on thetreadmill, taking a walk outside
, now it's, you know, for theweather is nice, even just for a
short time.
Listening to birds, nature,affirmations, for sure.
(28:15):
Something else I do that Istarted early on in my diagnosis
.
I don't know.
I think one of my therapistshad mentioned them and they're
called angel cards.
They're really cool and they'reby Doreen Virtue, d-o-r-e-e-n.
Virtue.
She's also an author of acouple books, I believe, and she
has several different decks.
(28:35):
And you know, you can sit inbed and ask am I going to get
out of this flare?
And it'll give you what thatangel wants you to hear.
And sometimes they're so spoton.
It freaks me out, but they'rereally cool, angel cards.
Speaker 1 (28:52):
There are waves of time where I feel like I'm
symptom free.
Those are my favorite times.
I think if any of us have everhad that, those are our favorite
times.
But lately I am noticing moreand more inflammation and pain.
I'm also having a really badpsoriasis breakout on just my
hands right now nowhere else,which I guess that's a plus.
But I did some recent bloodwork for the rheumatologist and
my inflammation markers cameback skyrocketed and I was like,
(29:15):
wow, no wonder, no wonder.
I really don't want to get outand do the walking and do the
things that I normally like to.
It's beautiful and it's warm.
So finally, yesterday I lookedat my mother-in-law and I said
do you want to go on a walk withme?
She said, yes, Okay, great, shewalks slow anyway, so that's
the perfect pace for me when I'mlike this.
But it's exactly what you guysare talking about Getting out
(29:38):
there and getting thoseendorphins and getting moving.
Even when it's hard and evenwhen we're skyrocketed
inflammation, it's worth it atthe end of the day, even if I
don't want to.
The next question there's a lotof pressure in our community to
stay positive and some of us,like Steve, we want to look for
the positive right, and I'm thatway too, but sometimes it's
(30:00):
hard.
How do you balance the optimismwith honoring the hard days as
well?
Speaker 2 (30:06):
This is another way to use the three steps of
resilience.
For example, there have beentimes when people ask so how are
you?
And especially if it's in acertain groups where the honesty
is not the honesty is expected,it's like how are you really,
is the question.
Sometimes people will, if I sayI'm okay, that they will say no
(30:27):
.
No, you shouldn't say that thisis how you need to answer that
question, with nothing butpositivity and so forth.
I've seen that multiple timesand I've also seen how people
have a difficult time reactingor they show that they're having
difficulty being with someonein pain.
(30:48):
There's a wonderful piece in theNew York Times about a year and
a half ago around Christmastime, I think it was 2023, where
we're talking about pain, allwrong, and it made the point
about everything from stigmas topeople having a difficult time
caring for people with pain orsickness.
As we all know, sometimespeople say the same thing, the
(31:08):
wrong thing.
So I practice using three stepsof resilience in the way that I
answer questions such as howare you?
I will be honest, I will honorwhat I'm actually experiencing,
but also in a way thatillustrates and models my
resilience.
For example, you've heard mesay that my baseline pain was
(31:29):
about three or four times higherthis past winter.
I'll go ahead and acknowledgethat and how difficult it was.
One of the things that I did nowI'm moving into the plan step.
One of the things that I'vedone is more work on making sure
that I'm expressing myself inmultiple ways enough so that I'm
validating and understandingwhat I'm experiencing and then
making the choice to then tapinto one of the 25 different
(31:53):
things in my resilience toolkit.
And now I keep followingthrough on that over and over
again so that I'm able to get tothat point where I can say it's
all part of my amazing lifestory or my best days are ahead
of me.
Speaker 1 (32:06):
Again, such a good nugget.
I could listen to you for hours, thank you, you guys are
(32:57):
blowing me away over here.
Speaker 4 (32:58):
Yeah, I mean, I'm always positive, I'm always
laughing.
I did a podcast the other dayand I was talking about
everything that I've beenthrough.
I was abandoned as a child atfour years old.
I was abused by the father thatabandoned me.
My mom nearly died.
I got shipped off to mygrandparents, I mean I could go
on and on.
I just figured out that I'm goodat suffering and I am just.
(33:19):
I always have a smile on myface.
I was always kind of the classclown back in the day and I'm
still that guy to this day.
Even when I'm in my worst, Ican still laugh.
When the sharpest pain hits me,I laugh through it.
But I will say that there aretimes when I need to commiserate
with other people that suffer,because you can only hold so
much in before that emotionaldam starts to break on you.
(33:41):
So I'll go on to anarachnoiditis forum and I'll
just look for somebody that'sgoing through the same thing
that I'm going through, andthat's the only time that I
really feel like I can be honestwith the suffering that I'm
dealing with.
But it's very cathartic to dothat.
It's helpful, and it remainsclosed off in that society of
other people that suffer throughwhat I suffer through, and
(34:02):
that's the way I want it,because I don't want that.
Well, I did put something onFacebook the other day what
arachnoiditis looks like.
I was having a very bad flare.
I rarely talk about my diseaseon my Facebook page, but I put
it out to the world.
I wanted people to know that.
You know the positive, steve,that you see, these are some of
the days that you don't see, butI don't do it for attention.
I don't do it for your pity orfor your misery.
(34:24):
Ask me how I'm doing and I'llalways say I'm doing good
despite having a bad day.
Because again it goes back tothat Stoic philosophy it's a
choice for me to be happy, to bepositive, and I want to inspire
others that may be sufferingsimilarly that you don't have to
be miserable because you brokea finger or you stubbed a toe or
you got a diagnosis that youweren't expecting.
(34:45):
Embrace it.
It's part of your life and youcan't move forward without it.
Speaker 1 (34:49):
Absolutely, absolutely, absolutely.
Speaker 2 (34:51):
If.
Speaker 4 (34:51):
I may.
Speaker 2 (34:52):
It's wonderful to hear what you're sharing, steve.
You use the word suffer andI've found I'm a communications
professional and so I can nerdout on words.
There's one definition of theword suffer, which means to
allow, and sometimes it's theway we frame it, such as I can
tell you are.
(35:12):
There is the hard part ofsuffering, but there's also that
part where we allow in a wayand not fight it Trade, the
fight for flow, so to speak.
Speaker 4 (35:23):
Growth through suffering right and, as an FYI,
my phone's at 8% when I drop off.
I won't be able to get back on.
It's been a pleasure, though,and I really appreciate the
opportunity, janet.
Speaker 1 (35:33):
Absolutely, and I think, steve and Rick, I need to
connect the two of you.
Speaker 4 (35:36):
Yeah, absolutely Please.
Speaker 1 (35:38):
I really appreciate each of you taking the time out.
I think it's an important topicthat people want to hear about.
Speaker 3 (35:43):
There's definitely a pity party in there, but not
long Doesn't.
But not long doesn't last longlike why me?
You know the whole thing.
But but then I look and youknow the kids look at one of my
kids, will call and be like man,you know, I got a cold.
What's?
What's the regimen?
(36:03):
You know just the kids, youknow.
I mean, I think the kids giveyou purpose.
My husband, who I love, youknow so much purpose to take
care of him too during this time.
He has a bit of a health crisisright now.
So it's a little role reversal,but I think love.
When I sit back and think ofhow much love is in my life, I'm
like so grateful.
Speaker 1 (36:24):
Yeah, yeah, absolutely.
And how special that feelsright.
Speaker 3 (36:29):
Right, and how special that feels, right, right
, you know, I think you and Italked about this on our podcast
, or maybe it was MS disrupted.
When you get a diagnosis andyou realize, okay, you got a new
normal, suddenly the stars andthe moon at night look different
, right.
You have a differentappreciation for the flowers.
(36:52):
When you're taking a walk, youhave a different appreciation,
right.
So love or having a dog or apet or a cat, you know, it just
takes on a new meaning.
Speaker 1 (36:58):
It absolutely does.
I have two cats that want tospend all their cuddle time with
me.
There's something to be saidwith having pets and people
around us.
I think sometimes, at the endof the day, that's what helps
keep us going.
Yes, I don't really accept alot of pressure within the
community.
If people try to give mepressure, good for you.
(37:18):
I usually don't accept it.
The pressure that's the problemis the pressure I put on myself
.
I'm very, very lucky to besurrounded by people that are
saying Jenny, why are you doingthis to yourself?
You're already doing so much.
How much of yourself can yougive Andy, one of the co-hosts?
She says Jenny, you are givingof yourself to strangers.
(37:39):
Do you realize you do that?
You come before these strangersand it's a good point.
But at the end of the day,that's just who I am.
I love being there for otherpeople and supporting other
people.
That's kind of hard to change.
I got to just lessen thepressure on myself.
All of you for being here.
This has been phenomenal.
It was great to bring back someof my favorite guests.
(38:02):
I love each of you and it wasfun to do this roundtable
together.
Until next time, don't forgetyour spoon.
Welcome back to my Spoonie Sisters podcast.
This is a powerful episode ofMind Over Misery.
Today we are diving into theemotional side of chronic
illness, the mental healthstruggles we don't always talk
about and the resilience ittakes to keep going.
Grab your favorite cozy drinkand join our panel as we unpack
(00:20):
grief, growth and the mindsetshifts that help us rise above
the misery.
Thank you all for joining.
Thanks for having me.
Speaker 2 (00:27):
Thank you so much.
Speaker 1 (00:28):
Thank you.
If your chronic illness had atheme song, what would it be
Right?
Speaker 2 (00:34):
away REO Speedwagon.
Roll the Changes.
Speaker 1 (00:37):
Excellent, that's a great one.
Speaker 3 (00:39):
I'm going to have to go with Bon Jovi's Living on a
Prayer.
Speaker 4 (00:42):
Another good one.
Speaker 3 (00:43):
That's great Yep with .
Speaker 4 (00:43):
Bon Jovi's Living on a Prayer Another good one.
That's great.
Yep.
Scott Stapp, who was the leadsinger for Creed, went out on
his own and he did an album.
After his recovery from a drugaddiction.
He wrote a song called Purposefor Pain, and that's my theme
song.
Speaker 1 (00:56):
Oh, okay, you've got to listen to it.
I will, and Lisa how about you?
Speaker 3 (01:02):
I don't know the original singers, but it's Keep
on Truckin', baby Ooh.
Speaker 1 (01:07):
Now I don't know if this would necessarily be my
theme song, but I did a video Iguess a parody to a Green Day
song not long ago I don't knowif any of you saw it and I kind
of changed the lyrics around andof course I'm going to have a
(01:31):
mind blank on what the song is.
Speaker 2 (01:33):
If I remember, I'll let you all know, but I love
Green Day, among many others.
I'm going to ask you all onemore Describe your chronic
illness using only emojis.
You know the two masks fortheater dramatically dramatic,
differently, differentexpressions, and that's what
it's like.
There are stark contrasts inthe journey.
Speaker 1 (01:46):
Would you use any other emojis?
Speaker 2 (01:48):
The next reply is this I'd pick them all because
crying feeling sometimesunstoppable.
For example, I recently had abreakthrough after working on
healing one particular traumafrom going through surgeries one
, two and three and that's mademe feel.
Lately I've been able to tapinto some new energy.
But virtually every emotion isin the mix.
Speaker 3 (02:24):
Yeah.
Speaker 4 (02:31):
I like that You're coming up with some good ones.
Yeah, mine's gonna be steppingon a nail with electricity going
through it.
Speaker 1 (02:34):
I'm feeling it right now actually I hope we're gonna
be a distraction for you oh yeah, and when I get my pizza, for
sure.
Speaker 3 (02:42):
Definitely, definitely, praying hands,
because I'm constantly reachingout to whosoever out there
Spirit, dangers, whatever canhelp me.
And then hearts and, likeStasha said, sprinkles of magic,
glitter, stars.
And then also, like Rick said,the sad emoji, the frustrated
(03:03):
emoji, the crying emoji.
So I think it's all of them.
Speaker 1 (03:08):
I actually pulled up my most used emojis and I
figured I'd share those with youall, because that probably just
goes with me, right, right.
So I have the one where you'resmiling but it looks like
sweat's coming down.
I use that one a lot withpeople I don't know why, smiling
, but it looks like sweat'scoming down.
I use that one a lot withpeople, I don't know why.
I use the melting one where youkind of have this weird face on
(03:29):
look on your face and you'remelting into the ground.
I use that one quite often.
That's my way of saying I'm notdoing so great, but I'm trying.
The one where you have yourface plant I use that one.
Tears, I have some happy thingsin there too.
I have some happy things inthere too.
I've got flowers, palm trees,strawberry.
(03:49):
I like to talk about food a lot.
I hope that helped loosen usall up a little bit before we
dive into these deeper questions.
The first one is living withchronic illness often means
grieving the life we once had.
How have you navigated thatemotional journey?
What helped you the most inmaking peace with your new
(04:09):
normal?
Speaker 2 (04:10):
I'm always ready.
Speaker 1 (04:12):
Okay.
Speaker 2 (04:17):
And I mean this in a positive way.
It's because I live it everyday.
And for those of you who don'tknow me, surgery number seven on
my left knee all started from afootball injury in the last
game of my senior high schoolfootball season.
Surgeries one, two and threeback before I was 20.
I had a fully arthritic kneefour, five and six in my late
season and in 2019, surgeryseven, which has left me my knee
(04:37):
in a state of trauma.
I experienced, for my baselinepain, a dozen or two instant
flashes of pain, generally inthe six to 10 range, and so it's
a daily thing.
I haven't found any relief.
I live it daily.
I've got answers to questionsand I've made it a passion.
I felt really strongly thatI've got to prepare myself and
(05:00):
get answers to questions, tosurvive and thrive in my own
unique way.
So part of the answer to thequestion about grieving is to be
fully intentional.
Fully intentional.
One of the things I learnedthrough surgeries four, five and
six is that the level of painneeds to be matched by the level
of intentionality.
I'm a lion of intentionality inso many ways in my life.
(05:24):
I look at grieving as somethingto do very deliberately because
so much good comes from it.
I practice probably every daysome measure of good grief and
I'll conclude with this thought,because this is a powerful
question.
We could spend the wholeafternoon talking about it.
I found that the benefits ofgrieving and in doing it very
(05:44):
intentionally, found that thebenefits of grieving, and doing
it very intentionally, bringsabout a lowering of cortisol
stress.
It lowers the pain.
So I know what it's like not todo it and the pain that comes
from that.
Speaker 1 (05:56):
I think that's so true, thank you Hi.
Speaker 4 (07:24):
So for me, my journey started back in 1982 when I had
my accident.
It took me years of sufferingto get a diagnosis.
In fact, my diagnosis came in2014.
And when I read the MRI report,it said arachnoiditis and all
these other things that I knew,with the exception of
arachnoiditis.
I started diving in doing myresearch and life got dark.
It was very tough because it'ssuch a rare disease and when
(07:47):
your neurosurgeon comes in,gives you the diagnosis and he
hangs his head and shakes it andsays I'm sorry, you know you're
in for hell, but I'm soresilient because of everything
that I've been through in mylife.
It didn't take long for me torecover from that and as I did
my research, there was verylittle on the internet back then
about arachnoiditis.
There's much more now.
There are groups on Facebookand I resigned myself to try to
(08:12):
become the face of the disease,which it has no face.
I have quite the story to tell.
As you know, I played a part insports history and that kind of
put me on the map.
I've been telling my story onpodcasts and just the other
night actually Tuesday I was ona call with four other gentlemen
that have the same disease.
It's called brothers inarachnoiditis, and they all
(08:34):
agreed with me that we need aface and I would be a good one.
So I'm not looking for theattention, but I am trying to
put forth an effort to showpeople that there's life without
medication, even though youhave one of the most painful
diseases.
I suffer daily, but I have gooddays, bad days and survival
days.
The good and the bad days Itake advantage, I make life
happen, I push through the painand I tell you what I'll be 63
(08:57):
this summer.
I've suffered since I was 20,but I feel better than ever.
So I've really come to termswith it and I embrace it now.
Speaker 2 (09:04):
It's intentionality in action right there.
Thank you, yeah.
Speaker 1 (09:07):
And, honestly, what I think is there's a lot of
groups out there that women getpart of right To talk about
chronic illness and chronic painand all that, but I think there
needs to be more options formen out there.
You deserve some guys to talkto.
Speaker 4 (09:22):
Men in general aren't really good at sharing their
feelings, so maybe that's why.
But yeah, I found this groupand it's really helped.
It's something I look forwardto every week.
Talking to these guys, I'vemade four fast friends and when
you have something like that inyour life to look forward to on
an ongoing basis, it makes sucha difference, such a difference.
Speaker 3 (09:41):
I think that, definitely, when I was first
diagnosed, which was in 2004, Isat with that for a long time
and you know and aggrieved myplans, went over my plans for my
life.
What was I?
You know, my whole thoughtpattern had changed and getting
(10:02):
used to that plan, the newnormal, the different plan.
Then I started doing researchon how am I going to manage this
?
Can I manage it holistically?
Can I manage it only withEastern and Western medicine
options?
Can I get on meeting people?
Of course, having a spirituallife, staying working would be
important to me with anycapacity, just being in life.
(10:25):
I think those things helped.
And of course, I think exercise, to any level, any, I don't
know if it's 10 minutes a dayand you're just walking, you
know, on the treadmill, on one,moving your body somehow, is
really good for the mind ormind-body connection, and so I
keep that way.
(10:45):
Of course, diet, which is neverfun, the anti-inflammatory diet
is not the most exciting, butit does work and that's why
holidays are hard.
It's kind of heartbreaking inthe beginning and in the middle.
I mean you just can't do whatyou used to do, but then you
(11:09):
become grateful for what you cando, I think each of us have
similarities in our stories andour grieving process, but then
we have the differences,especially having different
illnesses.
Speaker 1 (11:19):
Right, I look back and when I was first diagnosed,
I was almost 32, raising threemiddle school age kids, and I
did.
I grieved hard because Ithought, wow, I'm so young, I
shouldn't be living this life.
But I also wasn't thinkingabout the fact that I was going
to learn a whole new thing.
I was going to learn that theseillnesses, they affect all ages
(11:42):
.
There's no rhyme or reason, butI am so thankful for who it's
made me out to be.
I wouldn't change a thing, ascrazy as that might sound to
people.
I am thankful for my illnessesbecause they've made me a better
person.
They've made me more loving,compassionate.
I'm checking in and embracingother people in a way I don't
think I would have done, and soI'm glad I walked out of that
(12:06):
grieving pit that I was sittingin, thinking my life was over,
because it's not.
Look at all the amazing peopleI've met.
I've met awesome people, likeall of you, and I wouldn't
change a thing because of it.
Speaker 2 (12:17):
I applaud you.
You're reminding me of a song,jen.
The lyrics go something likeI'm thankful for the scars, for
without them I wouldn't know myheart.
I forget who it by.
You can sort of interpret thator apply different words to it.
I do the same thing I'mthankful for all 13 scars.
I wouldn't know who I am todaywithout all that I've gone
(12:38):
through.
Speaker 1 (12:39):
Maybe that needs to be my new theme song Now.
I got so excited to talk to allof you that I just drove us
directly in, but I think Ididn't take the time to let each
of you tell each other what itis you live with.
Speaker 2 (12:52):
So the doctors after a sensitive surgery number seven
on my left knee in 2019, it wasa partial revision of a total
knee replacement from 20 yearsbefore and at first, revision of
a total knee replacement from20 years before and at first
they diagnosed me with complexregional pain syndrome.
Working with a pain managementdoctor last year, he believes
(13:13):
we've ruled that out.
Last week I saw a doctor.
I thought I would never talk tothe kind of doctor about
options that I never thought I'dconsider it's amputation, that
I never thought I'd considerit's amputation, and, based on
the conversation, there are afew things I'm going to look
into before going further downthat path.
But it's those random blasts ofinstant agony over time.
(13:35):
Over the past five plus yearsnow, there are over 20 pain
sensations that I experience,most of them instant agony, and
I never know when each next oneis coming.
So I live with this.
I think starting with theconversation about grief is the
place to begin.
I don't think I'm a resiliencecoach.
I've been a caregiver for over20 years and a lot of people
(13:58):
think of grief as painful andgrieving as painful, when in
fact that's not the actual pain.
That's I believe I've found inresearching it.
That's, it's processing what ispainful.
The pain is from what we lose.
We talked about just now whatwe lost in terms of our former
selves and how we're blessedwith who we are and this growth
(14:21):
of character.
There's a lot to live with andthere's a book to each of us can
write.
I'm writing the book on themethodology that I use for
resilience and that I helppeople with, called Plan to Be
your Best as you navigate pain.
In a way and here's myconcluding thought for your
wonderful question Thank you forthis time I'll never actually
(14:44):
stop writing the book becauseI've got to continuously tell my
story and express what I'mgoing through.
Speaker 1 (14:50):
I think that's powerful.
It's going to help supportsomeone out there.
Someone needs to hear yourvoice.
Thank, you.
Speaker 3 (15:53):
Thank you.
In 2004, I was diagnosed withpolymyositis and then, about
maybe six years later, lupusshowed up.
I think it was always there,but it became more prevalent.
So yeah, so lupus andpolymyositis.
Speaker 1 (16:18):
What role has mental health support, such as things
like therapy, support groups oreven medication, played in your
chronic illness journey?
Speaker 2 (16:28):
It's been absolutely foundational, it's been
essential.
I know what it's like to nothave it, such as when I went
through the first threesurgeries and recovering from
those, as well as the.
I was not prepared.
I found that, even though we gointo each of our journeys not
fully prepared, it's never toolate to become able.
(16:49):
And becoming able includesbeing really deliberate about
mental health, identifying andunderstanding the patterns of
thoughts and feelings that wehave, validating them and
expressing them.
And mental health for me meansnot going it alone.
There are.
I have a counselor that I'vehad for years that gives me an
(17:10):
opportunity to do everythingfrom what I just described
identifying, understanding,validating, even letting me
lament, because lamenting I lookat and I experience it as a
level, a level to get to anotherlevel, to express it.
So mental health is a it'snecessary.
(17:37):
It's also the keys to beingresilient, finding each of our
own unique resilience andfinding our own unique ways of
thriving Driving.
Thank you.
Speaker 4 (19:05):
I never really sought out mental health help, Though
I needed it.
A long time ago I startedsubscribing to the philosophy of
stoicism.
It was born out of a Greekphilosopher named Epictetus.
He basically said everything inlife is a choice the way you
react to somebody in line behindyou that gets angry and your
reaction is your choice.
(19:28):
You don't have to react.
You don't have to have thatknee-jerk reactions, Knowing
that.
I chose to be happy despite thefact that I suffer immensely,
Like right now.
Sitting in this car seat islike sitting in an electric
chair.
Cars are very hard for me, butI choose to put a smile on my
face despite the pain.
I recently went through adivorce.
My disease was so tough on myfamily around me my wife ended
(19:51):
up leaving and she filed fordivorce two years later.
But I chose to have a goodrelationship with her to show my
kids that you don't have to bebitter and angry because
somebody loved you for 20 yearsand they decided to leave.
We're still good friends.
She's remarried.
The first soccer game, when Imet her new husband, I
approached him, extended my hand, said Hi, I'm Steve Lovelace,
(20:12):
I'm the ex-husband and I want tohave a good blended family.
So let's get together, let'shave a beer.
It was my choice, and he cameover to the house the other day.
First thing he did was walk upwith a smile and shake my hand
and asked me how I was doing.
So the choices we make matter.
I choose to be happy, I chooseto be positive, because being
positive is so hard to do intoday's society.
(20:33):
But again, it comes down towhat Steve wants on the inside
and how he wants to reflect tothe world outside.
So that's how I deal with it.
Speaker 3 (20:41):
I definitely have talked with different types of
therapists or people that canhelp.
You know, in the beginning moreso and a lot of research on my
own of tips and tricks thatwould help me get through the
times when you know I hadalready had appointments in the
(21:01):
rest of the week.
You know, in the beginning,where you just have some idle
time, there's definitelytransformative things that they
can help.
You know therapists can helpyou with and I also think good
friends, truly good friends,that you talk with, that
understand your situation.
It's very important.
(21:22):
Family can sometimes, you know,give you a different outlook
than you might be seeing foryourself because they know you
so well.
I think it's important to havea good attitude, like Steve said
, I mean to be as happy as youcan.
None of us know really when ourexpiration date is on this
(21:45):
earth, whether you have anillness, an autoimmune and
autoimmune whatever it may be ornot, and there is no way to
know that you know.
So living each day as happy asyou can is a lot nicer than
living depressed, sad, mad,angry.
Thank you.
Speaker 1 (22:05):
I agree with all of you so much.
You're just blowing me awaywith your answers on all these
questions and I have beencounseling over the years.
I've even tried betterhelpcomTotally recommend that to people
that are looking for an easy onthe go option.
A lot of podcasts out thereoffer codes for like a free
trial for a week, and that's howI did it.
It's great because you canactually do it through an app or
(22:27):
you can do it by text or phoneor email.
Just it's to your preference,right?
That's why I liked it so much.
And having that core group ofpeople that you trust and feel
comfortable with, there'snothing that can replace that.
It is important to have thosepeople that you can go to and
say I'm a mess today, I'mstruggling, you know, maybe it's
(22:50):
because your body's in pain, ormaybe just struggling
emotionally, for whatever reason.
Having those people that cankind of reframe our thoughts,
redirect where we're going,that's just not something we can
replace.
It's something so important inmy life.
All right, our next questionwhen symptoms flare or you hit a
(23:11):
mental low, what are some toolsor even rituals that you lean
on to protect your emotionalwell-being?
Speaker 2 (23:18):
We've talked about the three steps of resilience.
It's the first component of theplan to be your best method and
the steps are to tune in.
Second is to plan and third, beyour best.
They're basically threerelatively simple steps, but
what you do in each one matterstremendously.
I can tell from what Steveshared.
It sounds like what and this isvery true with the people that
(23:41):
practice this.
When I practice it, it buildsthe resilience toolkit things
that you can go to and rely onfor, as Steve put it, making
choices and then being your best, following through.
It's in that plan step that youcreate a list of options and
make the choices.
Be your best is followingthrough on it, and some people
(24:02):
and I'm able to most of the time, rip through these three steps
to quickly realize what I'mexperiencing, how I'm reacting
to it, make a choice and thenfollow through.
He keeps repeatedly probablyripping through it very quickly
and making that choice.
Some of the things in myresilience toolkit, for example,
are along the same lines, whereI'll get to making statements
(24:23):
such as this is all a part of myamazing life journey or my best
days are ahead of me, which Iwholeheartedly mean Sometimes
getting there, especially ifbecause I experience probably
being in the pit a couple oftimes a week, especially this
past year, this past winter,when my baseline pain was about
three to four times normal for acouple of months, doing some
(24:45):
grieving, good grief, every day.
It's part of those three stepsalways getting to that point.
So it's those steps that I'vefound have been to use your
words, stasia.
I think it was central, itworks and it's something that
you can practice and rely on.
Speaker 1 (25:02):
I'm glad that you shared about that, rick, and for
the rest of you, if you haven'theard his podcast episode or
about his resilience toolkit,ask either him or I.
We can send it to you, sharethat with you.
I think that's definitely ahelpful tool.
Speaker 4 (25:17):
I'm flaring right now and obviously I can still laugh
despite the immense pain.
I'm like at an eight or nine.
The thing that helps me themost is this girl right here,
right, Thank you.
(26:29):
Thank you, yes, absolutely yes,absolutely like I said, my girl
shelbo um she, when I, when I'mflaring, she knows it.
She's right under my feet,she's rarely a foot away and
because all my pain is focusedin my right foot, I rarely have
a shoe on but I always have asock on.
She's right underneath me and Irub my foot on her and it does
(26:50):
not bother her at all.
I think it comforts her just asmuch as it does.
But that's the one mostcomforting thing that I do when
I'm flaring and my flares willlast for two, three days
straight at level 10, no sleep,especially when storms move
through.
I take no pills other than aprednisone, maybe to preempt a
storm moving through, because itaffects the CSF pressure which
(27:11):
sends me into a flare-up.
So that's really about it.
Other than that, on my dayswhere I'm just kind of hurting
you know, between a five and aseven I'm on my bike.
It's truly the only time thatI'm pain-free and I think the
endorphins are probably the bestpainkillers of all.
I always get that post-ridehigh from a ride or a walk and
that helps probably more thananything.
Speaker 3 (27:32):
That's powerful.
Well, on the bad flare days,sometimes you just need to say,
okay, I'm going to commit tobeing in bed for a day or two
and have some meals eitherbrought to you or whatever.
Sometimes you're not evenhungry and I just okay, I'm
going to get stronger, I'm goingto get better, and this is how
(27:54):
it's going to help.
But, you know, in the mediumflares I will like Steve, I
think the endorphins there's not.
If it's a yoga class, it's.
If it's walking on thetreadmill, taking a walk outside
, now it's, you know, for theweather is nice, even just for a
short time.
Listening to birds, nature,affirmations, for sure.
(28:15):
Something else I do that Istarted early on in my diagnosis
.
I don't know.
I think one of my therapistshad mentioned them and they're
called angel cards.
They're really cool and they'reby Doreen Virtue, d-o-r-e-e-n.
Virtue.
She's also an author of acouple books, I believe, and she
has several different decks.
(28:35):
And you know, you can sit inbed and ask am I going to get
out of this flare?
And it'll give you what thatangel wants you to hear.
And sometimes they're so spoton.
It freaks me out, but they'rereally cool, angel cards.
Speaker 1 (28:52):
There are waves of time where I feel like I'm
symptom free.
Those are my favorite times.
I think if any of us have everhad that, those are our favorite
times.
But lately I am noticing moreand more inflammation and pain.
I'm also having a really badpsoriasis breakout on just my
hands right now nowhere else,which I guess that's a plus.
But I did some recent bloodwork for the rheumatologist and
my inflammation markers cameback skyrocketed and I was like,
(29:15):
wow, no wonder, no wonder.
I really don't want to get outand do the walking and do the
things that I normally like to.
It's beautiful and it's warm.
So finally, yesterday I lookedat my mother-in-law and I said
do you want to go on a walk withme?
She said, yes, Okay, great, shewalks slow anyway, so that's
the perfect pace for me when I'mlike this.
But it's exactly what you guysare talking about Getting out
(29:38):
there and getting thoseendorphins and getting moving.
Even when it's hard and evenwhen we're skyrocketed
inflammation, it's worth it atthe end of the day, even if I
don't want to.
The next question there's a lotof pressure in our community to
stay positive and some of us,like Steve, we want to look for
the positive right, and I'm thatway too, but sometimes it's
(30:00):
hard.
How do you balance the optimismwith honoring the hard days as
well?
Speaker 2 (30:06):
This is another way to use the three steps of
resilience.
For example, there have beentimes when people ask so how are
you?
And especially if it's in acertain groups where the honesty
is not the honesty is expected,it's like how are you really,
is the question.
Sometimes people will, if I sayI'm okay, that they will say no
(30:27):
.
No, you shouldn't say that thisis how you need to answer that
question, with nothing butpositivity and so forth.
I've seen that multiple timesand I've also seen how people
have a difficult time reactingor they show that they're having
difficulty being with someonein pain.
(30:48):
There's a wonderful piece in theNew York Times about a year and
a half ago around Christmastime, I think it was 2023, where
we're talking about pain, allwrong, and it made the point
about everything from stigmas topeople having a difficult time
caring for people with pain orsickness.
As we all know, sometimespeople say the same thing, the
(31:08):
wrong thing.
So I practice using three stepsof resilience in the way that I
answer questions such as howare you?
I will be honest, I will honorwhat I'm actually experiencing,
but also in a way thatillustrates and models my
resilience.
For example, you've heard mesay that my baseline pain was
(31:29):
about three or four times higherthis past winter.
I'll go ahead and acknowledgethat and how difficult it was.
One of the things that I did nowI'm moving into the plan step.
One of the things that I'vedone is more work on making sure
that I'm expressing myself inmultiple ways enough so that I'm
validating and understandingwhat I'm experiencing and then
making the choice to then tapinto one of the 25 different
(31:53):
things in my resilience toolkit.
And now I keep followingthrough on that over and over
again so that I'm able to get tothat point where I can say it's
all part of my amazing lifestory or my best days are ahead
of me.
Speaker 1 (32:06):
Again, such a good nugget.
I could listen to you for hours, thank you, you guys are
(32:57):
blowing me away over here.
Speaker 4 (32:58):
Yeah, I mean, I'm always positive, I'm always
laughing.
I did a podcast the other dayand I was talking about
everything that I've beenthrough.
I was abandoned as a child atfour years old.
I was abused by the father thatabandoned me.
My mom nearly died.
I got shipped off to mygrandparents, I mean I could go
on and on.
I just figured out that I'm goodat suffering and I am just.
(33:19):
I always have a smile on myface.
I was always kind of the classclown back in the day and I'm
still that guy to this day.
Even when I'm in my worst, Ican still laugh.
When the sharpest pain hits me,I laugh through it.
But I will say that there aretimes when I need to commiserate
with other people that suffer,because you can only hold so
much in before that emotionaldam starts to break on you.
(33:41):
So I'll go on to anarachnoiditis forum and I'll
just look for somebody that'sgoing through the same thing
that I'm going through, andthat's the only time that I
really feel like I can be honestwith the suffering that I'm
dealing with.
But it's very cathartic to dothat.
It's helpful, and it remainsclosed off in that society of
other people that suffer throughwhat I suffer through, and
(34:02):
that's the way I want it,because I don't want that.
Well, I did put something onFacebook the other day what
arachnoiditis looks like.
I was having a very bad flare.
I rarely talk about my diseaseon my Facebook page, but I put
it out to the world.
I wanted people to know that.
You know the positive, steve,that you see, these are some of
the days that you don't see, butI don't do it for attention.
I don't do it for your pity orfor your misery.
(34:24):
Ask me how I'm doing and I'llalways say I'm doing good
despite having a bad day.
Because again it goes back tothat Stoic philosophy it's a
choice for me to be happy, to bepositive, and I want to inspire
others that may be sufferingsimilarly that you don't have to
be miserable because you brokea finger or you stubbed a toe or
you got a diagnosis that youweren't expecting.
(34:45):
Embrace it.
It's part of your life and youcan't move forward without it.
Speaker 1 (34:49):
Absolutely, absolutely, absolutely.
Speaker 2 (34:51):
If.
Speaker 4 (34:51):
I may.
Speaker 2 (34:52):
It's wonderful to hear what you're sharing, steve.
You use the word suffer andI've found I'm a communications
professional and so I can nerdout on words.
There's one definition of theword suffer, which means to
allow, and sometimes it's theway we frame it, such as I can
tell you are.
(35:12):
There is the hard part ofsuffering, but there's also that
part where we allow in a wayand not fight it Trade, the
fight for flow, so to speak.
Speaker 4 (35:23):
Growth through suffering right and, as an FYI,
my phone's at 8% when I drop off.
I won't be able to get back on.
It's been a pleasure, though,and I really appreciate the
opportunity, janet.
Speaker 1 (35:33):
Absolutely, and I think, steve and Rick, I need to
connect the two of you.
Speaker 4 (35:36):
Yeah, absolutely Please.
Speaker 1 (35:38):
I really appreciate each of you taking the time out.
I think it's an important topicthat people want to hear about.
Speaker 3 (35:43):
There's definitely a pity party in there, but not
long Doesn't.
But not long doesn't last longlike why me?
You know the whole thing.
But but then I look and youknow the kids look at one of my
kids, will call and be like man,you know, I got a cold.
What's?
What's the regimen?
(36:03):
You know just the kids, youknow.
I mean, I think the kids giveyou purpose.
My husband, who I love, youknow so much purpose to take
care of him too during this time.
He has a bit of a health crisisright now.
So it's a little role reversal,but I think love.
When I sit back and think ofhow much love is in my life, I'm
like so grateful.
Speaker 1 (36:24):
Yeah, yeah, absolutely.
And how special that feelsright.
Speaker 3 (36:29):
Right, and how special that feels, right, right
, you know, I think you and Italked about this on our podcast
, or maybe it was MS disrupted.
When you get a diagnosis andyou realize, okay, you got a new
normal, suddenly the stars andthe moon at night look different
, right.
You have a differentappreciation for the flowers.
(36:52):
When you're taking a walk, youhave a different appreciation,
right.
So love or having a dog or apet or a cat, you know, it just
takes on a new meaning.
Speaker 1 (36:58):
It absolutely does.
I have two cats that want tospend all their cuddle time with
me.
There's something to be saidwith having pets and people
around us.
I think sometimes, at the endof the day, that's what helps
keep us going.
Yes, I don't really accept alot of pressure within the
community.
If people try to give mepressure, good for you.
(37:18):
I usually don't accept it.
The pressure that's the problemis the pressure I put on myself
.
I'm very, very lucky to besurrounded by people that are
saying Jenny, why are you doingthis to yourself?
You're already doing so much.
How much of yourself can yougive Andy, one of the co-hosts?
She says Jenny, you are givingof yourself to strangers.
(37:39):
Do you realize you do that?
You come before these strangersand it's a good point.
But at the end of the day,that's just who I am.
I love being there for otherpeople and supporting other
people.
That's kind of hard to change.
I got to just lessen thepressure on myself.
All of you for being here.
This has been phenomenal.
It was great to bring back someof my favorite guests.
(38:02):
I love each of you and it wasfun to do this roundtable
together.
Until next time, don't forgetyour spoon.
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