May 12, 2025 • 48 mins
Steve Lovelace's journey with arachnoiditis demonstrates the remarkable strength of the human spirit when faced with seemingly insurmountable pain. When his neurologist delivered the devastating diagnosis in 2014 with a solemn "I'm sorry," Steve realized his life would never be the same. This rare disease, ranking at the top of the pain scale, forced him to abandon his career as a traveling salesman and reimagine his entire existence.
The roots of Steve's condition trace back to 1982, when a horrific accident left him temporarily paralyzed from the waist down with three crushed vertebrae. Though he defied doctors' predictions by walking again, the trauma planted seeds for future suffering. As mobility issues and excruciating pain gradually took over, Steve initially followed the traditional path of pain management through medication. But after years as "a zombie still thrashing in pain," he made the bold decision to quit all medications cold turkey, enduring withdrawal that he describes as worse than his original accident.
What makes Steve's story truly extraordinary is his refusal to surrender. He categorizes his days as "good days, bad days, and survival days," strategically using each to maximize his life despite constant pain. On better days, he pushes his physical boundaries through endurance sports, riding his bike with ankle foot orthotics and walking with forearm crutches. He recently completed a 5K and is training for a quarter marathon, demonstrating that limitations exist primarily in our minds.
Steve's golden doodle Shelby provides constant companionship, particularly on difficult days when PTSD compounds his physical pain. His journey has evolved into a mission of inspiration as he writes a book about his experiences and pursues motivational speaking. Living by the mantra "Don't say I can't, say I'll try," Steve shows us that true resilience isn't about avoiding suffering but transforming it into purpose.
Listen as Steve shares profound insights about family dynamics with chronic illness, the pitfalls of the medical system, and finding meaning beyond diagnosis. His story reminds us that even in our darkest moments, we can choose how we respond to adversity.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to another episode of my Spoonie
Sisters Podcast, the space wherewe uplift, educate and empower
those navigating life withchronic illness.
I'm excited for today'sconversation because we have the
incredible guest joining us,someone whose journey is a true
testament to resilience,perseverance and finding purpose
beyond a diagnosis.
Today we're sitting down withSteve Lovelace, a devoted father
(00:23):
, former traveling salesman,endurance athlete and passionate
advocate.
Steve's journey has beenanything but easy.
Diagnosed in 2014 afterunexplained pain and progressive
mobility challenges, he wasforced to leave his career and
completely redefine his life.
But instead of letting thediagnosis define him, steve
(00:43):
chose to fight back withpersistence, perseverance and
perspiration.
Through endurance, sports,journaling and advocacy, steve
has found ways to not onlymanage his pain but also inspire
others facing similarchallenges.
He's currently working on abook about his experience and is
on a mission to raise awarenessabout these often overlooked
conditions, bringing much neededattention to the medical
(01:06):
community and beyond.
In this episode, we'll diveinto his journey, from the
challenges of daily life with arare disease to the power of
movement, mental health andfinding joy even in the face of
adversity.
Plus, we'll hear all about hisaspirations as an author and
speaker and what keeps himpushing forward every single day
.
Steve, welcome to the my SmileySisters podcast.
(01:28):
We're super honored to have youhere.
Speaker 2 (01:31):
I'm more than honored beyond to be here to share my
story with you guys.
I've listened to some of yourpodcasts and I know that you're
advocates as well as me andhopefully you know we can share
both of our stories and, youknow, if we touch one person out
there, that's the differencethat makes me different.
I mean, that's what reallycounts.
Speaker 1 (01:50):
Indeed, we've done a formal introduction, but can you
give our guests a little bit ofa background of what
kickstarted your diagnosisjourney and a little bit about
your diagnosis?
Speaker 2 (02:00):
Sure, my diagnosis of arachnoiditis, which is a rare
and extremely painful disease,it's on the chart of painful
diseases.
It's up there at the very top.
I was diagnosed, as you said,in 2014.
But the journey before that,and really kind of the epicenter
of what happened to me, was anaccident in 1982.
Cut in firewood tree, split inhalf, did what they call a
(02:22):
barber chair.
The tree came together on me.
The two halves came together onme, instantly, paralyzed me
from the waist down, brushed myface, bruised my heart, brushed
my left wrist, left me justclinging to life at that point
in time.
That was really what I think,the start of my journey with
arachnoiditis.
It took many, many yearsObviously that was 82, and it
(02:47):
took until 2014, when I wasdiagnosed, for me to really
realize that something was goingon.
I started having, as you said,mobility issues.
My foot got worse.
My left leg, which was alwaysmy strongest, started to get
weaker and weaker.
My muscles started to atrophy.
I started to lose bowel andbladder function, which was a
really big eye-opener.
Finally, the pain got to thepoint where I was missing so
(03:08):
much sleep at night.
I couldn't lay down withoutbeing in the excruciating pain.
If I went to the doctor, I wasafraid to get the diagnosis.
It's one of those things whereyou don't want to know the worst
.
So I finally just submitted,went in to see a neurologist,
did an MRI, which is the onlyway you can diagnose serotoninus
(03:28):
.
When the neurologist came in,this is when I knew I was in for
the living hell.
He came in and he hung his head, literally just shook it side
to side and said I'm sorry.
It almost brought me to tearsbecause I didn't know what to
expect.
He said you have a diseasecalled rheumatoiditis.
I'd never heard of it before.
I'd been in the medicalindustry for many, many years to
(03:50):
that point.
And when he said that there'snothing we can do for you, just
give you medication, kind oftreat you along that line, but
you have to learn to live withit.
I asked him how many cases haveyou seen in your career?
He said five.
That's when I knew I wasdealing with something
relatively rare.
Came home immediately, did myGoogle search on
arythroploiditis and there wasvery little on the internet back
(04:11):
in 2014 that I could buy aboutthis disease.
Since then there's been a lotmore.
I bet it's turned out that onthe internet there's a lot of
groups on Facebook where you cango and learn, commune with
people with the same disease andfind out probably more that way
about how to deal with whatyou're going through, how to
deal with the pain and some ofthe small things that the
doctors may or may not be ableto tell you or have never even
(04:34):
thought to tell you about thedisease.
But I've been through a journeyof nearly every pain medication
that you can imagine.
Got to the point where I wastaking so many that I was just
basically a zombie that waslying in bed still thrashing in
pain, and I knew that themedication was doing me no good.
So I quit them all cold turkey,against medical advice.
(04:55):
It probably was one of the mostdifficult things that I've ever
been through.
That's even comparing it to anaccident in my recovery back in
82.
Because when your body isrevolting from wanting that
medication and you're goingthrough those withdrawals and
you've been on the medicationfor so, so long and I've been on
some of them for about 10 yearsit took me at least three years
(05:15):
before I felt low again.
I kept having recurrences withthe medications.
Once I got clear of that, lifewas like one of those
commercials where you have thisdark screen that shows life with
whatever you're dealing with,and then the screen is removed
and you have all this clarity.
That's when life truly beganfor me again, and that was
probably 2017, 2018 is when Ihad that moment of clarity after
(05:41):
I got off all the medications.
Since then I've never lookedback.
I've learned how to deal with mypain.
I know that I have good days, Ihave bad days and I have
survival days.
On the good days and the baddays, I take advantage of what
my body's capable of doing.
So I push myself with myendurance sports, with walking
with my forearm crutches.
I ride my bike utilizing myAFOs ankle foot orthotics to
(06:04):
help stabilize my legs while I'mon the bike, knowing that if I
don't push myself and let myselfgo, my whole body's going to
atrophy and it's going to revoltagain.
So I push through the pain.
But it's those survival daysthat you know.
I kind of hunt them down, andthat's when I journal, that's
when I read, that's when I watchTV.
I do anything that I can todistract myself from the pain,
(06:25):
because it's so intense and todescribe it all, my pain is in
my right foot, on the lateralaspect.
When I have the intense pain,it feels like it's in a vice
with needles that it's justbeing pranked on.
And then there are times whenit feels like I have an ice pick
that's shooting straight downthe shaft of the toe.
(06:45):
It's like a hiccup.
It just comes and then it goes.
And then it comes and then itgoes.
But I know, even on those worstsurvival days, I'm going to be
able to get through it.
It's not going to kill me.
I have learned that I'm good atsuffering.
I'm really good at takingextreme pain and turning it
around, because when it's over Iknow that I have to take
(07:07):
advantage of those days.
Once it's passed, I push myselfand that's kind of my mission
in life is to show people thatyour small aches and pains are
nothing compared to being ableto take advantage of life when
you don't have those.
So you know, look beyond thosebad days and look for those days
where you can take advantage.
Speaker 1 (07:24):
You know.
Look beyond those bad days andlook for those days where you
can take advantage.
Did you mentally processreceiving the diagnosis that has
changed the course of your life?
What was that mental acceptanceprocess like?
Speaker 2 (07:34):
for you.
It was tough.
It was many, many weeks andmonths of realizing that I have
a rare disease that cannot becured, that I just have to live
and deal with.
One of the quotes that I readis from a physician that knows
about this disease said that thedifference between having a
right myeloditis and havingcancer is that death ultimately
(07:55):
comes and sometimes comes quickwith cancer, and your suffering
is over, whereas with the rightmyeloditis it's not going to
kill you.
It may shorten your life to abit, but you're just going to
have to endure the pain, day in,day out, nonstop, and it can
get worse.
And once I realized that I hadto deal with it, my mental
toughness, which is kind of mysuperpower, just kicked in and I
(08:18):
realized that if I can let thedisease choose to guide the
direction of my life, or I cantake control of myself and I can
make the disease choose toguide the direction of my life,
or I can take control myself andI can make the most of it, and
I think that I have.
I started to journal a lot moreand write my book, I started
doing sports more and it's beingable to get out and do all that
that has brought me a bit ofattention.
(08:39):
I have a small platform thatI've come to realize that if I
tell my story and I can inspirepeople, that's really my purpose
, and maybe that's what God'spurpose was for me to put me
here with this crazy, horribledisease, so that I can show
others that life doesn't endwhen you get this diagnosis.
It truly begins again.
And once I accepted that whichagain took quite some time
(09:01):
that's when my life started over.
Speaker 3 (09:03):
What does a typical day look like for you now,
compared to before yourdiagnosis?
Speaker 2 (09:09):
They're all different Today.
Well, let me start with lastnight.
I knew there was a storm at theend.
Storms affect my pain, itincreases my pain.
So springtime is really kind ofa tough season for me here in
Oklahoma, with all the stormsthat we're through, with all the
spring rains.
The last night it was up anddown, up and down I slept in a
(09:29):
chair because I couldn't laydown in the bed Numerous times
where I knew that I wasn't goingto be able to get back to sleep
.
So maybe around 4, 35 o'clock Iwas up making my coffee,
scrolling on my phone, got up,maybe up and out of my chair
around seven o'clock, gotcleaned up and just kind of
piddled around the house.
Today I lifted some weights,which I typically do, you know,
(09:51):
some light weightlifting just tokeep my body in shape Made a
little lunch, did a couple ofchores around the house.
I did some dishes, whichsometimes I can do it, sometimes
I can't.
I mean, leaning over the sinkto do dishes can be kind of a
chore, but typically I try toget out and do a short walk with
my golden doodle Shelby, puther on a tether around my waist
(10:14):
and then, you know, I toolaround the block and something
to get my endorphins pulsatingthrough my body, because that's
truly my pain medication thesedays.
You know lots of TV on the baddays when I can't do anything, a
little bit of journaling, buttypically if it's a really bad
day, a typical bad day, I'm updown, up down, lay down, sit,
(10:36):
stand, just because you can'tfind a comfortable position.
Speaker 3 (10:39):
So yeah, I can relate to that.
I think the more we're in pain,the more we're up down.
We're all around because you'reconstantly trying to find that
comfortable sweet spot, rightyeah, and you might find it.
Speaker 2 (10:55):
It might be five minutes, it might be an hour,
but it's worth the try.
Yeah, any small reprieve frompain is a welcome moment.
Uh-huh, and then when itcompletely passes and you're to
that level where my level ofconstant pain is around a five,
I hesitate to say that I may beup and down from this chair all
the pending, but when I havethese conversations it does take
me right off my pain somewhat,so I can typically get through a
good call.
(11:15):
But yeah, you look for thatsweet spot and it's very small.
It's like a needle in ahaystack sometimes it's
definitely worth it, though it'svery small.
Speaker 3 (11:23):
It's like a needle in a haystack sometimes.
It's definitely worth it,though.
Do you have what I would call aspoony toolkit to manage your
unpredictable flare-ups andimpact on your daily routine?
Speaker 2 (11:32):
I haven't really thought about that, but I would
say yes, to a certain extent.
I try to on my bike, no matterhow long I ride, for I'm pain
free.
I'm having one of the worst,absolute worst days.
(11:55):
It's hard to even put the shoeon.
I can't even let my foot touchthe air because it's so
sensitive even to the air attimes.
The minute I take a sock off,I'm just in extreme pain, even
on a good day.
So, needless to say, when socksstay on, that's one way that I
tend to cope with that.
And then, of course, when I'msitting and I'm in pain and I'm
(12:17):
just thrashing, I just tend to,as I said, up and down.
I'll pace around the house asmuch as I can to take my mind
off of it, sit down for maybeanother five or ten minutes, and
those are really the only waysthat I can cope with the pain.
Speaker 3 (12:29):
Do you feel like there's some socks that are
better than others?
Does that make a difference foryou?
Speaker 2 (12:35):
I found the most awesome socks on Amazon.
This winter my feet areconsistently frozen but I have
great vascular flow.
We've done all kinds ofperipheral vascular tests and
they come back with great flowand there's no PAD.
So I found these super thickslumps and they're so
(12:55):
comfortable, they keep my feetso warm and it's not like a
typical cotton.
I wish I could show you.
They're just all kind of fuzzyon the inside, twice as thick as
a normal sock and they give mecushion on the inside.
Twice as thick as a normal sockand they give me cushion on the
bottom of my foot.
More than anything, I thinkthat there's like an air gap
with the fluffiness on theinside of the socks.
That really helps metremendously.
(13:15):
I've tried ComboFit socks,hoping that the ComboMe have.
Yeah, so far these have been ablessing and I've already
purchased a couple more setsbecause I go through them so
quickly.
Speaker 3 (13:26):
I felt silly asking you about socks, of all things,
but I think anyone with chronicpain we have things like that.
That are our favorites.
We have our favorite socks.
Speaker 1 (13:36):
Absolutely, absolutely I specifically could
use those socks, because my feetare always icicles and they
hurt because they're cold and Ilike a thick sock and I like a
thick sock, I like a thick sock.
Speaker 2 (13:48):
Yeah, they're cheap, but they're awesome, so I'll
send you one.
Thank you, you're welcome.
Speaker 3 (13:54):
Do they have any kind of compression to them?
Speaker 2 (13:56):
A bit.
Yeah, I've tried compressionsocks, but they're so hard for
me to get on because my feetbasically from the knees down
I'm paralyzed to about 80% andfeeling is pretty much all gone.
From the waist down to theknees it's maybe another 25%
gone.
So when I'm trying to put acompression sock on it's really
(14:20):
very difficult.
I've got several that I'vebought over the years, but
they're so tight they just don'tdo me any good.
Speaker 3 (14:28):
Yeah, my husband's always trying to get me to get
compression socks that help myankles, but I have to explain to
him it's not even the ankles, Ijust like a little bit of like
a gentle hug around my feet, ifthat makes sense.
I don't know what it is, itjust feels good, kind of like
compression gloves.
Speaker 2 (14:44):
Yeah, I'm feeling myself.
They're very.
They're not super tight.
My ankles are so skinny.
My ankles are skinnier than mywrists and I'm not a big guy.
I'm 5'7", 140 pounds, so youcan imagine how thin my ankle is
.
It's just literally bone, andtissue.
Speaker 1 (15:05):
So I want to talk a little bit about family and
relationships.
So you're a dad and I like whenyou smile If I say you're a dad
and you got a smirk on yourface.
How have your sons inspired youor supported you on your
journey since?
Speaker 2 (15:24):
All of these things have happened.
That has been different fromthem.
I'm sorry.
They're the reason that we gotour phone medications.
They were very young just now19 and 17, so still pretty young
age-wise when I knew that I wasthe father that I wanted to be
(15:45):
with the medications, I knewthat I had to quit.
They were my motivation.
At the time they really didn'tunderstand what a whole other
part of the disease and the waythat it affects the family.
But my kids know that I'm therefor them and I was picking them
(16:13):
up from school and droppingthem off at their mom's house
Every day.
They were in high school beforethey could drive.
When I get in the car, it's oneof the most painful things that
I can do, because I'm stuck, Ican't do anything.
I mean that pain hits and it'sin my right foot, which I use
for the gas pedal I use for thebrake.
Stepping on the gas pedal islike stepping on broken glass.
It's just extremely, extremelypainful.
(16:36):
And when I had had some ofthose days, my youngest son they
would be sitting in the frontwould reach over gently, touch
me on the leg and just tell methat he loved me, that he knows
what I'm going through.
I mean that means a lot.
The worst thing about thisdisease and I will say pretty
much with any disease, I canalmost say with yours included
not even knowing but it's worseon everybody else around us than
(17:00):
it is on us because we learnhow to deal with it on a daily
basis.
We can never get away from itand it affects them so much.
I've missed way too many familyfunctions because I've had
those days where I couldn't getin the car, I couldn't drive an
hour, I couldn't sit inuncomfortable places around.
Numerous people want to gothrough what I'm going through
(17:24):
and that's my biggest regretwith this disease is missing out
on that part of life being ableto be there for all those
things that matter the most.
But I do know that I have thelove and support of my kids.
They know what I'm trying to dowith my journey now.
They support that and really ifI can do one thing out of this,
it's to motivate them to knowthat they're capable of getting
through so much in life andthey're capable of doing
(17:46):
anything they set their mind to,because I've been able to do
that and I'm trying to do thatas an example to them.
Speaker 1 (17:52):
So you've been really open about how your illness has
affected your family dynamicand, if you don't mind, I would
like to ask what advice wouldyou give couples navigating
chronic illness together?
Speaker 2 (18:05):
Just understand that you don't have a perfect
marriage anymore, you don't havea perfect union anymore.
You're going to be brokentogether.
And if you understand thatneither of you are going to be
perfect in any given way moreimportantly, with the disease
and how that's going to impactyou, just to understand that you
know it doesn't have to be aneye roll on the third
(18:27):
consecutive Christmas that youmiss because you can't make it
because of the disease.
It can be as simple as a hug,and I understand, and with our
technology today we'll FaceTimeyou and you'll be there
virtually.
You can add that type of layerto your family unit.
Really, it's just understandingand the compassion, not
(18:48):
necessarily asking how you'redoing on any given day, maybe on
your worst day, but when theysee you suffer, they don't have
to always come in and say howare you doing?
Is there anything I can get foryou?
Because if you need something,let them know.
You know what?
When I need something, I'll ask, but you don't have to
constantly be a safety net forme.
Just knowing that you're there,that you love, that you're
(19:10):
compassionate and that you care,that matters most.
Speaker 1 (19:14):
What do you wish that people understood the most
about?
How chronic illness affects notjust the individual but the
family dynamic?
What do you wish people knewmore about?
Speaker 2 (19:27):
family dynamic.
What do you wish people knewmore about?
You just have to give yourselftime to deal with learning how
to make life happen withwhatever disease or whatever
condition that you have.
You can't, you're not going toget it all up front.
You may not ever get it, butyou have to try to formulate a
new life around your diagnosis.
But it doesn't have to becentral to the life, it just has
to be a part of it.
(19:48):
And you have to acknowledgethat.
The worst thing that you can dois not acknowledging that you
have something and that it'sgoing to affect you.
And that's when anger sets in.
And that's what I like to say.
I come up with this term calledan emotional dam, where if you
hold everything in and you holdeverything back, that dam can
only hold back so much andeventually it's going to break.
(20:08):
And when it breaks, that's whenyou lash out.
And you know what Sometimesthat's going to happen.
Give whoever is going throughit, give them the five minutes
to go out in the backyard andyell at the top of their lungs.
You know it's not at you, it'snot at anybody in particular,
and sometimes, when that lashingout happens, people really have
to be understanding, but justacknowledging that you know
(20:32):
you're in the pit of despair attimes and that you're going to
get through it with the help ofthose around you.
I think that that matters mostto be able to deal with it and,
just, you know, get on with yourdaily life.
Speaker 3 (20:41):
What personal mantra or mindset shift has helped you
push through your tough times?
Speaker 2 (20:47):
I came up with this saying with my kids a long time
ago don't say I can't say I'lltry.
And that pretty much is mymantra for everything.
I'm currently training to do aquarter marathon at the Oklahoma
City Memorial Marathon withfour of my britch know, and I've
researched, you know who hasdone this and there's a guy
(21:08):
online that does it with walkingstaffs, but not necessarily
forearm crunches.
But I like to push myboundaries and I like to find
new areas that you know havenever been done, just to prove
to myself that you know what,despite not being able to
balance myself without myforearm crutches, I'm going to
(21:29):
go the distance and just pushingevery boundary that I can.
I did it with triathlon, I do itwith cycling.
I'm doing it with my forearmcrutches.
So last year was my first 5K inmany, many decades and I used
to run a six-minute mileconsistently.
Now I'm at 22.
It's not a point of shame asmuch as it's you know what?
22 is the new PR for me and Ican go out there and try to do
(21:50):
21 and 50.
But it's just, you know,pushing those boundaries because
life is not limiting me.
It's opening more doors for menow than it ever was.
Speaker 1 (21:58):
So that's a great segue.
How did you, how was thattransition into sports, from
high impact activities tofinding new ways to stay active,
to still enjoy the things andget some pain relief?
Can we talk a little bit abouthow that transition was?
Speaker 2 (22:15):
Yeah, it was right before my diagnosis and I've
always been an athlete my entirelife, even after my accident in
82.
I ended up doing triathlonthree years after and that's
when I became that seconddisabled athlete to have ever
completed a triathlon back then.
So it made me a pioneer insports.
(22:37):
I continued to do that up untilthe point when I got married
and had kids, and that's whenlife kind of throws you a
curveball Time gets limited, youfocus, you focus on family.
I was traveling a lot with mywork, but it wasn't until I
started feeling the firstinkling of arytenoiditis, which
(22:58):
was I just had this stabbingpain in my foot that was there
constantly for a week, veryintense.
Then it went away for a coupleof months and then it came back
Again.
It was kind of like hiccups.
Through all that, I just keptlooking at my body.
My legs started to atrophy, mybalance started to get worse.
So I thought I've been sittingon the same line too long.
(23:19):
I need to go push myself.
I dusted off my old bike, I gotit tuned up and started riding
with my son.
You bike, I got it tuned up andstarted riding with my son, and
you're talking to a guy thatused to ride 40, 50, 60 miles a
day.
That was, you know, back in theday, nothing to me.
I get back on this bike afterbeing sedentary for so long.
I do a half mile, my heartrate's at 150 and I'm out of
(23:43):
breath.
I'm like this is not me.
You know, this is not the guythat I was and the guy that I
want to be.
I just slowly continued to pushmyself and found that the
exercise really started tobenefit me.
You know, I was preventing themuscles from atrophy, I was
strengthening myself up and,more importantly, I was
(24:03):
strengthening my cardiovascularsystem, trying to keep my heart
strong.
And so now, you know, I'm backon the bike for an hour or two a
day, not every day, but mostdays I try to get on the trainer
or I'll go out for a goodleisurely ride.
I'll walk my doodle when I havethe ability to go out and walk,
and we'll do, you know, 45minutes or an hour, and it's not
(24:24):
that I'm completely pain-free,you know, 45 minutes or an hour
and it's not that I'm completelypain-free.
You know my back.
When I had my accident I gotthree crush vertebrae that were
fused, so there's a significantamount of pain with that.
There's definitely pain when Iwalk with my foot.
I'm not pain-free when I'mstanding, that's a hundred
percent.
But again, I continue to pushmyself and it's the 30 minutes
or the hour after I get doneexercising that I feel awesome.
(24:48):
But that's what keeps me goingis knowing that I'm going to
have that feeling afterwards andknowing that I prevented my
body from going two stepsbackward.
I pushed it one step forwardwith my effort and I continue to
maintain myself.
And the cardiovascular heartsays that I'm a 50-year-old I'll
be 63 this year, so it'sobviously doing me some good.
Speaker 3 (25:09):
Steve, what advice would you give to others with
mobility challenges who want tostay active?
Speaker 2 (25:16):
I go back to that.
Don't say I can't, say I'll try.
Too many people that are in awheelchair or have forearm
crutches or use canes, that's anexcuse not to do something.
I would say the vast majorityof people.
That's an excuse to sit on thesidelines and say I can't
because, say I'll try.
I didn't think that I could do a5k with forearm crutches, yet I
(25:39):
did it.
And the reason I did it isbecause it was a challenge.
You know, I just wanted to pushmy boundaries.
The ironic thing is I was oneof two people that day that did
that 5K with four on crutches.
I did my best to try to catchup with that little gal that was
in front of me.
My sister was walking with me.
(25:59):
I said let's try to catch up,because I want to get side by
side with this person and sayyou're inspiring me as much as I
hope I'm inspiring those aroundme.
And she found me after the fact, after the race was over, and
said that she knew me and thatwas, you know, quite a big thing
for me.
But you know, whether it'sforearm crutches, the wheelchair
(26:20):
, when I'm in a wheelchair youcan bet that I'll be racing in a
wheelchair.
If you know, if I was laying onmy belly on a belly cart, which
I was in the hospital back inthe 80s, I raced with the belly
cart.
The belly cart is, but it'sbasically a wheelchair.
That is a gurney and you lay onyour stomach and you wheel it
(26:42):
just like you would a regularwheelchair.
I did that was in thewheelchair or on the belly cart.
In the rehab center I used tojust scream up and down the
hallways and the nurses wouldcome at me and say Mr Lovelace,
you have to stop, you're goingto hurt yourself.
I'm like no worse than what gotme here in the first place.
So let me push this.
I could honestly, back in theday, do a wheelie with that
(27:04):
belly cart.
I might get the wheels two orthree inches, but that was my
challenge.
I would say, if you don't think, you can look to others for
inspiration and ask questions.
I went from using no mobilityaids to using a staff to using
(27:25):
forearm crutches.
Now I use a wheelchair, but Istill run my bike, I still walk.
I can't run anymore, but if Icould figure out a way to run,
trust me I would do it.
But I do have a racingwheelchair in my shed.
For the day when I can nolonger ambulate or ride my bike,
I will be racing a wheelchairand racing a hand-brake bike.
Speaker 1 (27:44):
Dave, what are some misconceptions about AA and CES
that you want to correct?
Speaker 2 (27:49):
Life doesn't end after the diagnosis.
Life truly begins once youfigure out how to live with it.
Some bodies are justsusceptible to the disease and
that cascade of it happeningbecause it's an autoimmune
disease, and once you have oneautoimmune disease, you're
pretty much prone to others,unfortunately, if there was one
thing that you could changeabout how the medical community
(28:11):
approaches your disease.
Speaker 1 (28:13):
What would it be?
Speaker 2 (28:14):
I think every, every physician, every frontline
physician, whether it's anorthopedic surgeon which is
probably going to know moreabout this than anything anybody
or neurosurgeon or neurologist,but I think your primary care
physicians all need to know thatif somebody comes in with pain
in their lower extremities andit's an electric shock type pain
(28:36):
, and it comes and it goes.
It intensifies with standing orwith laying down, and it comes
and it goes.
It intensifies with standing orwith laying down, feels like
water running down your legs oryou know, it's something along
that line.
Or with respect to CES, ifthey're having bladder control
issues or bowel issues ornumbness in the saddle area,
they need to get an NL.
That's the only way that youcan diagnose this.
(28:57):
I was reading in NRP magazinethe other day.
It was a multi-page story aboutthis lady that had this pain in
her leg after a back surgeryand she started to lose function
, to lose feeling, and went inand they diagnosed it as failed
back syndrome.
And that's really kind of afallback diagnosis to anybody
that has back pain or lowerextremity pain after back
(29:18):
surgery.
You've got failed back syndrome.
It's just something you'regoing to have to deal with.
Why not do an MRI and get adefinitive diagnosis, because
the quicker you catch CES, cescan be reversed if you catch it
quick enough, because it'sbasically compression on the
nerves.
Arachnoiditis can't be reversedonce diagnosed early.
There are methods to deal withit.
(29:40):
I got caught in the late stagesof it.
I was kind of at the extremeend and there was really not
much that they could do for me.
But there are treatments thatthey can give that do help.
They kind of slow down theprogression of the disease.
But if we could acknowledgethis to the frontline physicians
, primary care people that mostpeople are going to see first
(30:00):
off, and if that's the one thingthat they can come away with to
go get that diagnosis early,that would be the thing that.
Speaker 1 (30:07):
I would.
I have another question becauseyou piqued my curiosity While
you were going through yourdiagnosis journey were you
originally being treated forneuropathy?
Speaker 2 (30:20):
Yes, yeah, yeah, then , originally being treated for
neuropathy.
Yes, yeah, gabapentin didnothing for me.
Speaker 1 (30:31):
And so I would imagine, because for that class
of drugs, the gabapentin, theLyricas it can either make you
hypersensitive or dull the nerve, and in your case did it make
you hypersensitive, even more soto the pain receptor than you
were.
Speaker 2 (30:41):
If I think back retrospectively, it's kind of
hard for me to recall to behonest with you.
I do know that I was on it, forI think I was 1,800 milligrams a
day, so a very large study,yeah, and it initially turned me
into a zombie Again.
That was one of the drugs thatI quit cold turkey.
I just kept taking it and itdid nothing for my pain.
(31:03):
When I stopped taking it, painwas still there at the same
level that it was when I was onthe medication, so all I was
doing was just putting chemicalsthrough my liver and into my
body that I didn't need, sadly.
But yeah, neuropathy good, easydiagnosis for somebody that
feels that tingling in theirfoot.
But again, the deeper diagnosiswould be to get an MRI, not
(31:24):
necessarily diagnose it asneuropathy, but get a definitive
diagnosis as to whether or notit is rheumatoid arthritis or
chronic chronic syndrome.
Speaker 3 (31:31):
How can people support research for both of
those?
Speaker 2 (31:34):
There's some research .
The last research or study thatwas done was maybe more than a
decade ago and it was using adrug called thalidomide, which
is the drug that people are born.
Well, they gave it to womenback in the East and 60s for
morning sickness and all of asudden you had babies born with
very small limbs or no limbs atall.
(31:55):
Really it was a horrible,horrible drug, but apparently it
had some sort of medicalinterest to somebody and they
did a study with it.
I don't think it went anywhere.
I've been on the NIH websitelooking for studies for
retinoiditis and even neuropathybut honestly, since there's not
a cure and the pain medicationsare so prevalent that's really
(32:19):
the diagnosis equals an openpharmacy to any kind of pain
medication that you could everimagine, which is fine.
I mean, I had a pain medicationdoctor I saw twice.
I stopped seeing him the secondtime because he said we'll just
keep throwing drugs at youuntil they stick.
I'm like that's no way topractice medicine.
I'm here not for you being adispensary of medications and at
(32:41):
the time I smoked medicalmarijuana, which is legal here
in Oklahoma, and that helpedkind of take the edge off.
I mean, if I could say itanyway.
If my pain is like a spike, itrounds the spike up.
The pain's still there, it'sjust not as sure, but it did
help.
He said you're going to have tostop that while you're taking
this and I said, well, this isworking for me.
It's just not a show, but itdid help.
He said you're going to have tostop that while I'm taking this
(33:02):
and I said, well, this isworking for me.
That's none.
So you know what's the deal.
And I think part of that wasjust they wanted to drug test
and get their money from that.
They wanted me to come in oncea month for the drug test.
They wanted me to come in oncea month, throw that appointment
money and they wanted to kickback from the pharmacy or the
rep for the medication.
(33:23):
And I've been on the inside ofthe medical industry.
I know how it works and it'sworse.
Back in the day it used to beso corrupt.
It's a little more upfront nowwhere physicians have to
acknowledge how much money theyget from a specific company on
the company's website, becauseit's a kickback and it's not
right for the patient.
Their advocacy is for themedication, not the patient.
(33:46):
In my opinion, if anybody wantsto do anything with research, I
would be happy to donate mybody to science.
I'm already donating my brainto the CTE.
I've had many head injuries andI know that there's probably
some chronic traumaticencephalopathy.
I get one on there.
But yeah, we need research inthis area.
Speaker 1 (34:05):
So you're writing a book and I want to talk about
that.
What has that process been likefor you?
Me, writing my book was verytherapeutic.
It was very therapeutic.
So how's it been for you?
Speaker 2 (34:16):
Well, that's how it started for me was therapy I
(34:38):
mean, writing is very cathartdial into.
You know, the central story,which my central story is.
The accident that nearly killedme, paralyzed me for a period
of of time and then I defiantlytold that the doctors I'm
walking out of the hospitalafter they told me that I'd
never walk again.
I did walk out of the hospital.
I took four steps with crutches.
I proved them all wrong.
(35:00):
I went on to make history insports.
I'm writing about that aspect.
When you write and you'llnotice, you expose yourself to
the world.
You expose yourself, your story, you expose yourself to
criticism, naysayers, most ofwhat I'm going to write, people
are going to go.
He didn't do that.
Or creative license with the wayI tell the story when I say I
(35:25):
grew up poor and my fatherabandoned our family when I was
four and my mother struggled inthe 60s to raise two kids on her
own with no help from them.
And there were days where mymom tells this story my sister
only got $500 for Christmas oneyear from our grandparents and
we knew that mom was strugglingto put food on the table and she
(35:49):
heard us talking through mysister's door about what we
could each do with our $5 to buygroceries, to buy a hamburger,
because mom could do a lot withhamburger, you know.
We could buy eggs because wecan eat eggs for dinner and we
can eat eggs for breakfast, andthat's how poor we were.
There was typically more spacein our cabinets than there was
food when I was growing up, so Ican tell that story.
(36:10):
But again, the neighborhood thatwe grew up in, which was a nice
nuclear family neighborhood, wewere one of a few families on
the block that didn't have afather and you know that was a
significant impact for me and Ican touch on so many different
things with my book and mystories.
But yeah, it's hard to knowwhat to focus on and where to
start, where to end, how muchdetail to put into this, that
(36:32):
and the other.
But it is therapeutic.
I'm going back over oldmemories that have long since
been forgotten, so I don't bringtears to my eyes in a good way
and a bad way.
Speaker 1 (36:42):
Yeah, so you said that you wanted to do some
motivational speaking.
What do you hope to achievewith that, and have you already
have you started?
Are we doing speakingengagements?
Speaker 2 (36:54):
I did my first at the University of Oklahoma Health
Sciences Center, which is myalma mater.
It was a year and a half agoand it was a huge honor for me
because it was one of theprofessors that I had studied
under.
Gave my speech, I told my storyand the great thing about this
story is that I shouldn't havebeen in the program that I
(37:16):
graduated from.
My grades were horrible, butsomehow this lady saw potential
in me and I told her during theinterview process if you give me
an opportunity, I promise Iwon't let you down.
I graduated at the top of myclass not at the very top, but I
was in the top of my class.
She gave me that opportunityand when I told that story under
her lectureship and some peopleconnect to me after the fact
(37:39):
and just tell me how moving mystory was to them One young girl
said that she had been trainingfor the marathon at their Plum
City Memorial and this gave hermore inspiration to want to go
do that race.
Just hearing my story andknowing that you're fully
capable of doing anything.
So that's really the gist of mystory is don't give up, don't
give in.
Go forward and find somethingdifficult to do, because that's
(38:01):
when you really discover mostabout yourself, is during the
difficult times.
Speaker 1 (38:05):
I have one more serious question before we put
you in the hot seat for the FastFive.
Ok, the Fast Five is all funquestions.
Notice how I did the series ofF words Jen, Fast Five, fun, OK.
So the last serious question,though, is where do you see
yourself in the next five years?
Speaker 2 (38:24):
I see myself on stage a lot.
I see myself signing my bookfor people and not for
self-recognition.
As much as I want those sameconversations.
I want people to come up to meand say your story inspired me
to do this.
That's what, if I can say, allthe suffering was worth one
(38:44):
person coming up to me sayingthat they're inspired by my
story.
That's truly worth it to me.
That's the price that I pay,going through everything that I
go through, to hear that.
But it's not forself-recognition or, you know,
pat on the back.
I definitely see myself outthere telling my story,
motivating the masses, becauseit is, even from my point of
(39:05):
view, a moving story.
I definitely want that to takeplace and I think with my
persistence, perseverance andperspiration, I will make that
happen.
Speaker 3 (39:14):
Tell us a little bit about your golden doodle, Shelby
.
How does she bring joy to yourlife?
Speaker 2 (39:20):
She's so awesome.
She follows me pretty mucheverywhere I go.
I can't go out the door withouther scratching it if I close it
behind.
The funny thing about this dogis that I have a home health
that comes in three times a weekworking on that, but also that
we're trying to heal up for thepast couple of years.
She absolutely loves my nurse,my nurse loves her.
(39:42):
I have a new wound care teamthat comes in.
It's a male and a female.
They tag team and they loveShelby and Shelby loves them.
In fact I live on a propertythat's an acre and a quarter and
she's got an underground collarthat she can wear to kind of
keep her in the perimeter.
But she tends to do what I callgo off-roading, where she is
(40:06):
kind of a social butterfly andshe'll go over and see the
neighbor's dogs and myneighbor's dogs come over and
see Shelby and it's just.
We have such a greatneighborhood.
But for me personally, becauseI have PTSD on my bad days,
she's right under my feet.
It's like she senses and sheknows and one of the things that
they tell you with this diseaseis, if you have a pet, stroke
your pet pet on your pet forhalf an hour or more a day
(40:29):
because that is therapeutic.
That helps relieve your stress.
It's very calming for you andfor them.
She's just my constantcompanion.
She's a 70-pound lap dog.
I like to say Up and down onthe furniture, that doesn't
bother me at all.
I just want my girl near me.
Living alone for so long it wascomforting to have her here
with me.
She's not the perfect dog, butshe's perfect for me.
(40:51):
I think that's really all thatmatters.
Speaker 1 (40:53):
I love it.
Shelby sounds like the wholevibe for the whole neighborhood.
She sounds like a therapy dogfor the entire neighborhood.
I love that.
I love that for you, I lovethat for your neighbors, I love
that for your care team.
Speaker 2 (41:11):
I love that for Shelby.
Let me one last story about thedogs.
In the fall my neighbors to thenorth of me have two dogs,
summer and Tilly, and in thefall I'll be watching football.
I'll have my back door open towhere Shelby can go in and out.
Neighbors will go to a footballgame and I'll be watching the
dogs.
And all of a sudden the dogsjust come walking in, sit on my
feet and we're watching footballand at one point in time I
thought I was going to end upselling my house.
(41:33):
I said you're going to have totell the new neighbors that move
in that if they leave theirdoor open they may have another
morning guest come in.
But eventually they'll learn tolove these girls.
Yeah, they absolutely love.
When I say let's go see Summeror Tilly Bell, she gets her tail
wagging.
We go over and they have fun.
That's your playtime.
Speaker 1 (41:50):
If you could go back and talk to young Steve before
all of life happened and Stevegot his diagnosis, and give
young Steve some advice aboutthe future.
What advice would you giveyoung you about the future?
Speaker 2 (42:04):
Pay more attention to my education.
I was not the best student whenI was going to elementary and
high school.
A lot of that had to do withsome of the trauma that I went
through as a kid, you know.
I ended up living in a coupleof different households when I
was younger, so I had someabandonment issues and I was
never the best student.
But once I got my wheelsunderneath me, I hit college.
(42:26):
I put myself through college.
It was the first to graduate inmy family.
My grades turned around and thelast three years of my college
career I don't think I ended upwith anything less than an A or
a B.
So yeah, I finally figured thatout.
I wish I would have figured itout sooner because I probably
would have gone deeper intomedicine At.
Yeah, I finally figured thatout, and I wish I would have
figured it out sooner because Iprobably would have gone deeper
into medicine.
At one time I thought I mighthave wanted to be a PA or a
physician, just because I lovethat aspect of the human body
(42:49):
and treating people.
Speaker 3 (42:50):
Okay, this one's a fun one.
What's your ultimate pizzatopping combo?
That's it.
Speaker 2 (43:00):
There used to be a pizza place called Ken's here in
Oklahoma City or in Oklahoma,and they have spicy sauce.
You can't put any topping onthat.
That is not good.
I mean, you know, a spicy pizzasauce is awesome.
I was talking to my mom aboutthis the other day because she
loves pizza.
In fact, when I was in thehospital there was a sign that
said please bring a pizza to myroom, but the sad thing was my
(43:22):
mouth was wired shut so Icouldn't have eaten it.
You know I love pepperoni, Ilove jalapenos and I love
mushrooms I mean, you can throwthat on there and, of course, a
good dose of cheese.
You know you've got to have thestringy cheese when you pull
that, but yeah, that's probablymy favorite.
Now I have had deep dishes inChicago at Udo's, which is good,
but I'm more of a thin crustkind of guy.
(43:43):
But yeah, gotta get my pitbloody.
Speaker 3 (43:45):
Thin and crunchy all the way.
Speaker 1 (43:47):
Yeah, I'm from Chicago, so the deep dish, the
Chicago style pizza, I get it.
It's a lot of cheese, it is alot of cheese right in your
mouth, right up front, rightaway in reverse pizza.
But just watching you describethe pizza, like you were glowing
, I could tell your love forpizza and I was getting excited.
I was like he talks about food,like I talk about food and you
(44:08):
got happy.
I love pizza.
I also love pizza.
Thanks to the it's a real thingI will be getting pizza today.
I will be having pizza today,so humor me If you could sit
down with any historical figureor inspiring person for coffee
and you only get 10 minutes.
Who are you sitting down with?
(44:29):
What are you talking about andwhy I?
Speaker 2 (44:32):
was asked this question in sociology in college
and I go back to the same guy,abraham Lincoln, I think, having
a coffee with that guy.
I mean he was, he grew up inthe middle of nowhere, he
studied by candlelight, hebecame a lawyer in the backwoods
of Illinois and I would justwant to know what motivated him
(44:55):
to do what he did and, to youknow, want to be president,
because the guy made such animpact for our country.
I would want to talk to himpresent because the guy made
such an impact for our country.
I had one talk to him.
He just was such a historicfigure for our country, mainly
just to see how tall he reallywas.
Speaker 1 (45:08):
They said he was, was he seven feet?
Speaker 2 (45:11):
He was very tall.
I know that.
I've seen pictures, historicalpictures, where he's towering
over everybody and then he'sstill on the stone pipe half,
which even elevated him thatmuch more.
So, yeah, and I'm 5' everybody.
And then he's still by path,which even elevated him that
much more.
Speaker 3 (45:22):
So, yeah, and I'm five, seven, so I know I'd be
looking at that I'm five, two ona good day, so I can only
imagine he just has to look likea tower of a man yeah yeah,
yeah, that's clear.
Speaker 1 (45:34):
That's two feet easy.
Taller than me, because I'mwell foot, it's a foot, a full,
full foot.
But I'm going to say two feetbecause I won't complete.
They won't give me six feet,they will only give me five, 11
and three quarters.
And so I will take the five, 11and three quarters.
Speaker 2 (45:51):
I could probably get another eight to an inch five,
seven and a half feet with mysocks.
Speaker 3 (45:58):
Steve, it was a pleasure to have you on.
Thank you.
It was a pleasure to have youon Thank you.
Speaker 2 (46:01):
It was a pleasure to be here and talk to you.
I don't get out of the housemuch, so when I get the
opportunities to do theseinterviews, it really elevates
me.
My mind has been off my footthe entire time.
I still feel, it's stillhurting, but yeah, these
distractions are the small joysthat I get in life, and this
(46:21):
will impact me for the rest ofthe month, if not further down
the line.
Speaker 3 (46:25):
Thank you, thank you so much.
All right, spoonies, until nexttime.
Don't forget your spoon.
Welcome back to another episode of my Spoonie
Sisters Podcast, the space wherewe uplift, educate and empower
those navigating life withchronic illness.
I'm excited for today'sconversation because we have the
incredible guest joining us,someone whose journey is a true
testament to resilience,perseverance and finding purpose
beyond a diagnosis.
Today we're sitting down withSteve Lovelace, a devoted father
(00:23):
, former traveling salesman,endurance athlete and passionate
advocate.
Steve's journey has beenanything but easy.
Diagnosed in 2014 afterunexplained pain and progressive
mobility challenges, he wasforced to leave his career and
completely redefine his life.
But instead of letting thediagnosis define him, steve
(00:43):
chose to fight back withpersistence, perseverance and
perspiration.
Through endurance, sports,journaling and advocacy, steve
has found ways to not onlymanage his pain but also inspire
others facing similarchallenges.
He's currently working on abook about his experience and is
on a mission to raise awarenessabout these often overlooked
conditions, bringing much neededattention to the medical
(01:06):
community and beyond.
In this episode, we'll diveinto his journey, from the
challenges of daily life with arare disease to the power of
movement, mental health andfinding joy even in the face of
adversity.
Plus, we'll hear all about hisaspirations as an author and
speaker and what keeps himpushing forward every single day
.
Steve, welcome to the my SmileySisters podcast.
(01:28):
We're super honored to have youhere.
Speaker 2 (01:31):
I'm more than honored beyond to be here to share my
story with you guys.
I've listened to some of yourpodcasts and I know that you're
advocates as well as me andhopefully you know we can share
both of our stories and, youknow, if we touch one person out
there, that's the differencethat makes me different.
I mean, that's what reallycounts.
Speaker 1 (01:50):
Indeed, we've done a formal introduction, but can you
give our guests a little bit ofa background of what
kickstarted your diagnosisjourney and a little bit about
your diagnosis?
Speaker 2 (02:00):
Sure, my diagnosis of arachnoiditis, which is a rare
and extremely painful disease,it's on the chart of painful
diseases.
It's up there at the very top.
I was diagnosed, as you said,in 2014.
But the journey before that,and really kind of the epicenter
of what happened to me, was anaccident in 1982.
Cut in firewood tree, split inhalf, did what they call a
(02:22):
barber chair.
The tree came together on me.
The two halves came together onme, instantly, paralyzed me
from the waist down, brushed myface, bruised my heart, brushed
my left wrist, left me justclinging to life at that point
in time.
That was really what I think,the start of my journey with
arachnoiditis.
It took many, many yearsObviously that was 82, and it
(02:47):
took until 2014, when I wasdiagnosed, for me to really
realize that something was goingon.
I started having, as you said,mobility issues.
My foot got worse.
My left leg, which was alwaysmy strongest, started to get
weaker and weaker.
My muscles started to atrophy.
I started to lose bowel andbladder function, which was a
really big eye-opener.
Finally, the pain got to thepoint where I was missing so
(03:08):
much sleep at night.
I couldn't lay down withoutbeing in the excruciating pain.
If I went to the doctor, I wasafraid to get the diagnosis.
It's one of those things whereyou don't want to know the worst
.
So I finally just submitted,went in to see a neurologist,
did an MRI, which is the onlyway you can diagnose serotoninus
(03:28):
.
When the neurologist came in,this is when I knew I was in for
the living hell.
He came in and he hung his head, literally just shook it side
to side and said I'm sorry.
It almost brought me to tearsbecause I didn't know what to
expect.
He said you have a diseasecalled rheumatoiditis.
I'd never heard of it before.
I'd been in the medicalindustry for many, many years to
(03:50):
that point.
And when he said that there'snothing we can do for you, just
give you medication, kind oftreat you along that line, but
you have to learn to live withit.
I asked him how many cases haveyou seen in your career?
He said five.
That's when I knew I wasdealing with something
relatively rare.
Came home immediately, did myGoogle search on
arythroploiditis and there wasvery little on the internet back
(04:11):
in 2014 that I could buy aboutthis disease.
Since then there's been a lotmore.
I bet it's turned out that onthe internet there's a lot of
groups on Facebook where you cango and learn, commune with
people with the same disease andfind out probably more that way
about how to deal with whatyou're going through, how to
deal with the pain and some ofthe small things that the
doctors may or may not be ableto tell you or have never even
(04:34):
thought to tell you about thedisease.
But I've been through a journeyof nearly every pain medication
that you can imagine.
Got to the point where I wastaking so many that I was just
basically a zombie that waslying in bed still thrashing in
pain, and I knew that themedication was doing me no good.
So I quit them all cold turkey,against medical advice.
(04:55):
It probably was one of the mostdifficult things that I've ever
been through.
That's even comparing it to anaccident in my recovery back in
82.
Because when your body isrevolting from wanting that
medication and you're goingthrough those withdrawals and
you've been on the medicationfor so, so long and I've been on
some of them for about 10 yearsit took me at least three years
(05:15):
before I felt low again.
I kept having recurrences withthe medications.
Once I got clear of that, lifewas like one of those
commercials where you have thisdark screen that shows life with
whatever you're dealing with,and then the screen is removed
and you have all this clarity.
That's when life truly beganfor me again, and that was
probably 2017, 2018 is when Ihad that moment of clarity after
(05:41):
I got off all the medications.
Since then I've never lookedback.
I've learned how to deal with mypain.
I know that I have good days, Ihave bad days and I have
survival days.
On the good days and the baddays, I take advantage of what
my body's capable of doing.
So I push myself with myendurance sports, with walking
with my forearm crutches.
I ride my bike utilizing myAFOs ankle foot orthotics to
(06:04):
help stabilize my legs while I'mon the bike, knowing that if I
don't push myself and let myselfgo, my whole body's going to
atrophy and it's going to revoltagain.
So I push through the pain.
But it's those survival daysthat you know.
I kind of hunt them down, andthat's when I journal, that's
when I read, that's when I watchTV.
I do anything that I can todistract myself from the pain,
(06:25):
because it's so intense and todescribe it all, my pain is in
my right foot, on the lateralaspect.
When I have the intense pain,it feels like it's in a vice
with needles that it's justbeing pranked on.
And then there are times whenit feels like I have an ice pick
that's shooting straight downthe shaft of the toe.
(06:45):
It's like a hiccup.
It just comes and then it goes.
And then it comes and then itgoes.
But I know, even on those worstsurvival days, I'm going to be
able to get through it.
It's not going to kill me.
I have learned that I'm good atsuffering.
I'm really good at takingextreme pain and turning it
around, because when it's over Iknow that I have to take
(07:07):
advantage of those days.
Once it's passed, I push myselfand that's kind of my mission
in life is to show people thatyour small aches and pains are
nothing compared to being ableto take advantage of life when
you don't have those.
So you know, look beyond thosebad days and look for those days
where you can take advantage.
Speaker 1 (07:24):
You know.
Look beyond those bad days andlook for those days where you
can take advantage.
Did you mentally processreceiving the diagnosis that has
changed the course of your life?
What was that mental acceptanceprocess like?
Speaker 2 (07:34):
for you.
It was tough.
It was many, many weeks andmonths of realizing that I have
a rare disease that cannot becured, that I just have to live
and deal with.
One of the quotes that I readis from a physician that knows
about this disease said that thedifference between having a
right myeloditis and havingcancer is that death ultimately
(07:55):
comes and sometimes comes quickwith cancer, and your suffering
is over, whereas with the rightmyeloditis it's not going to
kill you.
It may shorten your life to abit, but you're just going to
have to endure the pain, day in,day out, nonstop, and it can
get worse.
And once I realized that I hadto deal with it, my mental
toughness, which is kind of mysuperpower, just kicked in and I
(08:18):
realized that if I can let thedisease choose to guide the
direction of my life, or I cantake control of myself and I can
make the disease choose toguide the direction of my life,
or I can take control myself andI can make the most of it, and
I think that I have.
I started to journal a lot moreand write my book, I started
doing sports more and it's beingable to get out and do all that
that has brought me a bit ofattention.
(08:39):
I have a small platform thatI've come to realize that if I
tell my story and I can inspirepeople, that's really my purpose
, and maybe that's what God'spurpose was for me to put me
here with this crazy, horribledisease, so that I can show
others that life doesn't endwhen you get this diagnosis.
It truly begins again.
And once I accepted that whichagain took quite some time
(09:01):
that's when my life started over.
Speaker 3 (09:03):
What does a typical day look like for you now,
compared to before yourdiagnosis?
Speaker 2 (09:09):
They're all different Today.
Well, let me start with lastnight.
I knew there was a storm at theend.
Storms affect my pain, itincreases my pain.
So springtime is really kind ofa tough season for me here in
Oklahoma, with all the stormsthat we're through, with all the
spring rains.
The last night it was up anddown, up and down I slept in a
(09:29):
chair because I couldn't laydown in the bed Numerous times
where I knew that I wasn't goingto be able to get back to sleep
.
So maybe around 4, 35 o'clock Iwas up making my coffee,
scrolling on my phone, got up,maybe up and out of my chair
around seven o'clock, gotcleaned up and just kind of
piddled around the house.
Today I lifted some weights,which I typically do, you know,
(09:51):
some light weightlifting just tokeep my body in shape Made a
little lunch, did a couple ofchores around the house.
I did some dishes, whichsometimes I can do it, sometimes
I can't.
I mean, leaning over the sinkto do dishes can be kind of a
chore, but typically I try toget out and do a short walk with
my golden doodle Shelby, puther on a tether around my waist
(10:14):
and then, you know, I toolaround the block and something
to get my endorphins pulsatingthrough my body, because that's
truly my pain medication thesedays.
You know lots of TV on the baddays when I can't do anything, a
little bit of journaling, buttypically if it's a really bad
day, a typical bad day, I'm updown, up down, lay down, sit,
(10:36):
stand, just because you can'tfind a comfortable position.
Speaker 3 (10:39):
So yeah, I can relate to that.
I think the more we're in pain,the more we're up down.
We're all around because you'reconstantly trying to find that
comfortable sweet spot, rightyeah, and you might find it.
Speaker 2 (10:55):
It might be five minutes, it might be an hour,
but it's worth the try.
Yeah, any small reprieve frompain is a welcome moment.
Uh-huh, and then when itcompletely passes and you're to
that level where my level ofconstant pain is around a five,
I hesitate to say that I may beup and down from this chair all
the pending, but when I havethese conversations it does take
me right off my pain somewhat,so I can typically get through a
good call.
(11:15):
But yeah, you look for thatsweet spot and it's very small.
It's like a needle in ahaystack sometimes it's
definitely worth it, though it'svery small.
Speaker 3 (11:23):
It's like a needle in a haystack sometimes.
It's definitely worth it,though.
Do you have what I would call aspoony toolkit to manage your
unpredictable flare-ups andimpact on your daily routine?
Speaker 2 (11:32):
I haven't really thought about that, but I would
say yes, to a certain extent.
I try to on my bike, no matterhow long I ride, for I'm pain
free.
I'm having one of the worst,absolute worst days.
(11:55):
It's hard to even put the shoeon.
I can't even let my foot touchthe air because it's so
sensitive even to the air attimes.
The minute I take a sock off,I'm just in extreme pain, even
on a good day.
So, needless to say, when socksstay on, that's one way that I
tend to cope with that.
And then, of course, when I'msitting and I'm in pain and I'm
(12:17):
just thrashing, I just tend to,as I said, up and down.
I'll pace around the house asmuch as I can to take my mind
off of it, sit down for maybeanother five or ten minutes, and
those are really the only waysthat I can cope with the pain.
Speaker 3 (12:29):
Do you feel like there's some socks that are
better than others?
Does that make a difference foryou?
Speaker 2 (12:35):
I found the most awesome socks on Amazon.
This winter my feet areconsistently frozen but I have
great vascular flow.
We've done all kinds ofperipheral vascular tests and
they come back with great flowand there's no PAD.
So I found these super thickslumps and they're so
(12:55):
comfortable, they keep my feetso warm and it's not like a
typical cotton.
I wish I could show you.
They're just all kind of fuzzyon the inside, twice as thick as
a normal sock and they give mecushion on the inside.
Twice as thick as a normal sockand they give me cushion on the
bottom of my foot.
More than anything, I thinkthat there's like an air gap
with the fluffiness on theinside of the socks.
That really helps metremendously.
(13:15):
I've tried ComboFit socks,hoping that the ComboMe have.
Yeah, so far these have been ablessing and I've already
purchased a couple more setsbecause I go through them so
quickly.
Speaker 3 (13:26):
I felt silly asking you about socks, of all things,
but I think anyone with chronicpain we have things like that.
That are our favorites.
We have our favorite socks.
Speaker 1 (13:36):
Absolutely, absolutely I specifically could
use those socks, because my feetare always icicles and they
hurt because they're cold and Ilike a thick sock and I like a
thick sock, I like a thick sock.
Speaker 2 (13:48):
Yeah, they're cheap, but they're awesome, so I'll
send you one.
Thank you, you're welcome.
Speaker 3 (13:54):
Do they have any kind of compression to them?
Speaker 2 (13:56):
A bit.
Yeah, I've tried compressionsocks, but they're so hard for
me to get on because my feetbasically from the knees down
I'm paralyzed to about 80% andfeeling is pretty much all gone.
From the waist down to theknees it's maybe another 25%
gone.
So when I'm trying to put acompression sock on it's really
(14:20):
very difficult.
I've got several that I'vebought over the years, but
they're so tight they just don'tdo me any good.
Speaker 3 (14:28):
Yeah, my husband's always trying to get me to get
compression socks that help myankles, but I have to explain to
him it's not even the ankles, Ijust like a little bit of like
a gentle hug around my feet, ifthat makes sense.
I don't know what it is, itjust feels good, kind of like
compression gloves.
Speaker 2 (14:44):
Yeah, I'm feeling myself.
They're very.
They're not super tight.
My ankles are so skinny.
My ankles are skinnier than mywrists and I'm not a big guy.
I'm 5'7", 140 pounds, so youcan imagine how thin my ankle is
.
It's just literally bone, andtissue.
Speaker 1 (15:05):
So I want to talk a little bit about family and
relationships.
So you're a dad and I like whenyou smile If I say you're a dad
and you got a smirk on yourface.
How have your sons inspired youor supported you on your
journey since?
Speaker 2 (15:24):
All of these things have happened.
That has been different fromthem.
I'm sorry.
They're the reason that we gotour phone medications.
They were very young just now19 and 17, so still pretty young
age-wise when I knew that I wasthe father that I wanted to be
(15:45):
with the medications, I knewthat I had to quit.
They were my motivation.
At the time they really didn'tunderstand what a whole other
part of the disease and the waythat it affects the family.
But my kids know that I'm therefor them and I was picking them
(16:13):
up from school and droppingthem off at their mom's house
Every day.
They were in high school beforethey could drive.
When I get in the car, it's oneof the most painful things that
I can do, because I'm stuck, Ican't do anything.
I mean that pain hits and it'sin my right foot, which I use
for the gas pedal I use for thebrake.
Stepping on the gas pedal islike stepping on broken glass.
It's just extremely, extremelypainful.
(16:36):
And when I had had some ofthose days, my youngest son they
would be sitting in the frontwould reach over gently, touch
me on the leg and just tell methat he loved me, that he knows
what I'm going through.
I mean that means a lot.
The worst thing about thisdisease and I will say pretty
much with any disease, I canalmost say with yours included
not even knowing but it's worseon everybody else around us than
(17:00):
it is on us because we learnhow to deal with it on a daily
basis.
We can never get away from itand it affects them so much.
I've missed way too many familyfunctions because I've had
those days where I couldn't getin the car, I couldn't drive an
hour, I couldn't sit inuncomfortable places around.
Numerous people want to gothrough what I'm going through
(17:24):
and that's my biggest regretwith this disease is missing out
on that part of life being ableto be there for all those
things that matter the most.
But I do know that I have thelove and support of my kids.
They know what I'm trying to dowith my journey now.
They support that and really ifI can do one thing out of this,
it's to motivate them to knowthat they're capable of getting
through so much in life andthey're capable of doing
(17:46):
anything they set their mind to,because I've been able to do
that and I'm trying to do thatas an example to them.
Speaker 1 (17:52):
So you've been really open about how your illness has
affected your family dynamicand, if you don't mind, I would
like to ask what advice wouldyou give couples navigating
chronic illness together?
Speaker 2 (18:05):
Just understand that you don't have a perfect
marriage anymore, you don't havea perfect union anymore.
You're going to be brokentogether.
And if you understand thatneither of you are going to be
perfect in any given way moreimportantly, with the disease
and how that's going to impactyou, just to understand that you
know it doesn't have to be aneye roll on the third
(18:27):
consecutive Christmas that youmiss because you can't make it
because of the disease.
It can be as simple as a hug,and I understand, and with our
technology today we'll FaceTimeyou and you'll be there
virtually.
You can add that type of layerto your family unit.
Really, it's just understandingand the compassion, not
(18:48):
necessarily asking how you'redoing on any given day, maybe on
your worst day, but when theysee you suffer, they don't have
to always come in and say howare you doing?
Is there anything I can get foryou?
Because if you need something,let them know.
You know what?
When I need something, I'll ask, but you don't have to
constantly be a safety net forme.
Just knowing that you're there,that you love, that you're
(19:10):
compassionate and that you care,that matters most.
Speaker 1 (19:14):
What do you wish that people understood the most
about?
How chronic illness affects notjust the individual but the
family dynamic?
What do you wish people knewmore about?
Speaker 2 (19:27):
family dynamic.
What do you wish people knewmore about?
You just have to give yourselftime to deal with learning how
to make life happen withwhatever disease or whatever
condition that you have.
You can't, you're not going toget it all up front.
You may not ever get it, butyou have to try to formulate a
new life around your diagnosis.
But it doesn't have to becentral to the life, it just has
to be a part of it.
(19:48):
And you have to acknowledgethat.
The worst thing that you can dois not acknowledging that you
have something and that it'sgoing to affect you.
And that's when anger sets in.
And that's what I like to say.
I come up with this term calledan emotional dam, where if you
hold everything in and you holdeverything back, that dam can
only hold back so much andeventually it's going to break.
(20:08):
And when it breaks, that's whenyou lash out.
And you know what Sometimesthat's going to happen.
Give whoever is going throughit, give them the five minutes
to go out in the backyard andyell at the top of their lungs.
You know it's not at you, it'snot at anybody in particular,
and sometimes, when that lashingout happens, people really have
to be understanding, but justacknowledging that you know
(20:32):
you're in the pit of despair attimes and that you're going to
get through it with the help ofthose around you.
I think that that matters mostto be able to deal with it and,
just, you know, get on with yourdaily life.
Speaker 3 (20:41):
What personal mantra or mindset shift has helped you
push through your tough times?
Speaker 2 (20:47):
I came up with this saying with my kids a long time
ago don't say I can't say I'lltry.
And that pretty much is mymantra for everything.
I'm currently training to do aquarter marathon at the Oklahoma
City Memorial Marathon withfour of my britch know, and I've
researched, you know who hasdone this and there's a guy
(21:08):
online that does it with walkingstaffs, but not necessarily
forearm crunches.
But I like to push myboundaries and I like to find
new areas that you know havenever been done, just to prove
to myself that you know what,despite not being able to
balance myself without myforearm crutches, I'm going to
(21:29):
go the distance and just pushingevery boundary that I can.
I did it with triathlon, I do itwith cycling.
I'm doing it with my forearmcrutches.
So last year was my first 5K inmany, many decades and I used
to run a six-minute mileconsistently.
Now I'm at 22.
It's not a point of shame asmuch as it's you know what?
22 is the new PR for me and Ican go out there and try to do
(21:50):
21 and 50.
But it's just, you know,pushing those boundaries because
life is not limiting me.
It's opening more doors for menow than it ever was.
Speaker 1 (21:58):
So that's a great segue.
How did you, how was thattransition into sports, from
high impact activities tofinding new ways to stay active,
to still enjoy the things andget some pain relief?
Can we talk a little bit abouthow that transition was?
Speaker 2 (22:15):
Yeah, it was right before my diagnosis and I've
always been an athlete my entirelife, even after my accident in
82.
I ended up doing triathlonthree years after and that's
when I became that seconddisabled athlete to have ever
completed a triathlon back then.
So it made me a pioneer insports.
(22:37):
I continued to do that up untilthe point when I got married
and had kids, and that's whenlife kind of throws you a
curveball Time gets limited, youfocus, you focus on family.
I was traveling a lot with mywork, but it wasn't until I
started feeling the firstinkling of arytenoiditis, which
(22:58):
was I just had this stabbingpain in my foot that was there
constantly for a week, veryintense.
Then it went away for a coupleof months and then it came back
Again.
It was kind of like hiccups.
Through all that, I just keptlooking at my body.
My legs started to atrophy, mybalance started to get worse.
So I thought I've been sittingon the same line too long.
(23:19):
I need to go push myself.
I dusted off my old bike, I gotit tuned up and started riding
with my son.
You bike, I got it tuned up andstarted riding with my son, and
you're talking to a guy thatused to ride 40, 50, 60 miles a
day.
That was, you know, back in theday, nothing to me.
I get back on this bike afterbeing sedentary for so long.
I do a half mile, my heartrate's at 150 and I'm out of
(23:43):
breath.
I'm like this is not me.
You know, this is not the guythat I was and the guy that I
want to be.
I just slowly continued to pushmyself and found that the
exercise really started tobenefit me.
You know, I was preventing themuscles from atrophy, I was
strengthening myself up and,more importantly, I was
(24:03):
strengthening my cardiovascularsystem, trying to keep my heart
strong.
And so now, you know, I'm backon the bike for an hour or two a
day, not every day, but mostdays I try to get on the trainer
or I'll go out for a goodleisurely ride.
I'll walk my doodle when I havethe ability to go out and walk,
and we'll do, you know, 45minutes or an hour, and it's not
(24:24):
that I'm completely pain-free,you know, 45 minutes or an hour
and it's not that I'm completelypain-free.
You know my back.
When I had my accident I gotthree crush vertebrae that were
fused, so there's a significantamount of pain with that.
There's definitely pain when Iwalk with my foot.
I'm not pain-free when I'mstanding, that's a hundred
percent.
But again, I continue to pushmyself and it's the 30 minutes
or the hour after I get doneexercising that I feel awesome.
(24:48):
But that's what keeps me goingis knowing that I'm going to
have that feeling afterwards andknowing that I prevented my
body from going two stepsbackward.
I pushed it one step forwardwith my effort and I continue to
maintain myself.
And the cardiovascular heartsays that I'm a 50-year-old I'll
be 63 this year, so it'sobviously doing me some good.
Speaker 3 (25:09):
Steve, what advice would you give to others with
mobility challenges who want tostay active?
Speaker 2 (25:16):
I go back to that.
Don't say I can't, say I'll try.
Too many people that are in awheelchair or have forearm
crutches or use canes, that's anexcuse not to do something.
I would say the vast majorityof people.
That's an excuse to sit on thesidelines and say I can't
because, say I'll try.
I didn't think that I could do a5k with forearm crutches, yet I
(25:39):
did it.
And the reason I did it isbecause it was a challenge.
You know, I just wanted to pushmy boundaries.
The ironic thing is I was oneof two people that day that did
that 5K with four on crutches.
I did my best to try to catchup with that little gal that was
in front of me.
My sister was walking with me.
(25:59):
I said let's try to catch up,because I want to get side by
side with this person and sayyou're inspiring me as much as I
hope I'm inspiring those aroundme.
And she found me after the fact, after the race was over, and
said that she knew me and thatwas, you know, quite a big thing
for me.
But you know, whether it'sforearm crutches, the wheelchair
(26:20):
, when I'm in a wheelchair youcan bet that I'll be racing in a
wheelchair.
If you know, if I was laying onmy belly on a belly cart, which
I was in the hospital back inthe 80s, I raced with the belly
cart.
The belly cart is, but it'sbasically a wheelchair.
That is a gurney and you lay onyour stomach and you wheel it
(26:42):
just like you would a regularwheelchair.
I did that was in thewheelchair or on the belly cart.
In the rehab center I used tojust scream up and down the
hallways and the nurses wouldcome at me and say Mr Lovelace,
you have to stop, you're goingto hurt yourself.
I'm like no worse than what gotme here in the first place.
So let me push this.
I could honestly, back in theday, do a wheelie with that
(27:04):
belly cart.
I might get the wheels two orthree inches, but that was my
challenge.
I would say, if you don't think, you can look to others for
inspiration and ask questions.
I went from using no mobilityaids to using a staff to using
(27:25):
forearm crutches.
Now I use a wheelchair, but Istill run my bike, I still walk.
I can't run anymore, but if Icould figure out a way to run,
trust me I would do it.
But I do have a racingwheelchair in my shed.
For the day when I can nolonger ambulate or ride my bike,
I will be racing a wheelchairand racing a hand-brake bike.
Speaker 1 (27:44):
Dave, what are some misconceptions about AA and CES
that you want to correct?
Speaker 2 (27:49):
Life doesn't end after the diagnosis.
Life truly begins once youfigure out how to live with it.
Some bodies are justsusceptible to the disease and
that cascade of it happeningbecause it's an autoimmune
disease, and once you have oneautoimmune disease, you're
pretty much prone to others,unfortunately, if there was one
thing that you could changeabout how the medical community
(28:11):
approaches your disease.
Speaker 1 (28:13):
What would it be?
Speaker 2 (28:14):
I think every, every physician, every frontline
physician, whether it's anorthopedic surgeon which is
probably going to know moreabout this than anything anybody
or neurosurgeon or neurologist,but I think your primary care
physicians all need to know thatif somebody comes in with pain
in their lower extremities andit's an electric shock type pain
(28:36):
, and it comes and it goes.
It intensifies with standing orwith laying down, and it comes
and it goes.
It intensifies with standing orwith laying down, feels like
water running down your legs oryou know, it's something along
that line.
Or with respect to CES, ifthey're having bladder control
issues or bowel issues ornumbness in the saddle area,
they need to get an NL.
That's the only way that youcan diagnose this.
(28:57):
I was reading in NRP magazinethe other day.
It was a multi-page story aboutthis lady that had this pain in
her leg after a back surgeryand she started to lose function
, to lose feeling, and went inand they diagnosed it as failed
back syndrome.
And that's really kind of afallback diagnosis to anybody
that has back pain or lowerextremity pain after back
(29:18):
surgery.
You've got failed back syndrome.
It's just something you'regoing to have to deal with.
Why not do an MRI and get adefinitive diagnosis, because
the quicker you catch CES, cescan be reversed if you catch it
quick enough, because it'sbasically compression on the
nerves.
Arachnoiditis can't be reversedonce diagnosed early.
There are methods to deal withit.
(29:40):
I got caught in the late stagesof it.
I was kind of at the extremeend and there was really not
much that they could do for me.
But there are treatments thatthey can give that do help.
They kind of slow down theprogression of the disease.
But if we could acknowledgethis to the frontline physicians
, primary care people that mostpeople are going to see first
(30:00):
off, and if that's the one thingthat they can come away with to
go get that diagnosis early,that would be the thing that.
Speaker 1 (30:07):
I would.
I have another question becauseyou piqued my curiosity While
you were going through yourdiagnosis journey were you
originally being treated forneuropathy?
Speaker 2 (30:20):
Yes, yeah, yeah, then , originally being treated for
neuropathy.
Yes, yeah, gabapentin didnothing for me.
Speaker 1 (30:31):
And so I would imagine, because for that class
of drugs, the gabapentin, theLyricas it can either make you
hypersensitive or dull the nerve, and in your case did it make
you hypersensitive, even more soto the pain receptor than you
were.
Speaker 2 (30:41):
If I think back retrospectively, it's kind of
hard for me to recall to behonest with you.
I do know that I was on it, forI think I was 1,800 milligrams a
day, so a very large study,yeah, and it initially turned me
into a zombie Again.
That was one of the drugs thatI quit cold turkey.
I just kept taking it and itdid nothing for my pain.
(31:03):
When I stopped taking it, painwas still there at the same
level that it was when I was onthe medication, so all I was
doing was just putting chemicalsthrough my liver and into my
body that I didn't need, sadly.
But yeah, neuropathy good, easydiagnosis for somebody that
feels that tingling in theirfoot.
But again, the deeper diagnosiswould be to get an MRI, not
(31:24):
necessarily diagnose it asneuropathy, but get a definitive
diagnosis as to whether or notit is rheumatoid arthritis or
chronic chronic syndrome.
Speaker 3 (31:31):
How can people support research for both of
those?
Speaker 2 (31:34):
There's some research .
The last research or study thatwas done was maybe more than a
decade ago and it was using adrug called thalidomide, which
is the drug that people are born.
Well, they gave it to womenback in the East and 60s for
morning sickness and all of asudden you had babies born with
very small limbs or no limbs atall.
(31:55):
Really it was a horrible,horrible drug, but apparently it
had some sort of medicalinterest to somebody and they
did a study with it.
I don't think it went anywhere.
I've been on the NIH websitelooking for studies for
retinoiditis and even neuropathybut honestly, since there's not
a cure and the pain medicationsare so prevalent that's really
(32:19):
the diagnosis equals an openpharmacy to any kind of pain
medication that you could everimagine, which is fine.
I mean, I had a pain medicationdoctor I saw twice.
I stopped seeing him the secondtime because he said we'll just
keep throwing drugs at youuntil they stick.
I'm like that's no way topractice medicine.
I'm here not for you being adispensary of medications and at
(32:41):
the time I smoked medicalmarijuana, which is legal here
in Oklahoma, and that helpedkind of take the edge off.
I mean, if I could say itanyway.
If my pain is like a spike, itrounds the spike up.
The pain's still there, it'sjust not as sure, but it did
help.
He said you're going to have tostop that while you're taking
this and I said, well, this isworking for me.
It's just not a show, but itdid help.
He said you're going to have tostop that while I'm taking this
(33:02):
and I said, well, this isworking for me.
That's none.
So you know what's the deal.
And I think part of that wasjust they wanted to drug test
and get their money from that.
They wanted me to come in oncea month for the drug test.
They wanted me to come in oncea month, throw that appointment
money and they wanted to kickback from the pharmacy or the
rep for the medication.
(33:23):
And I've been on the inside ofthe medical industry.
I know how it works and it'sworse.
Back in the day it used to beso corrupt.
It's a little more upfront nowwhere physicians have to
acknowledge how much money theyget from a specific company on
the company's website, becauseit's a kickback and it's not
right for the patient.
Their advocacy is for themedication, not the patient.
(33:46):
In my opinion, if anybody wantsto do anything with research, I
would be happy to donate mybody to science.
I'm already donating my brainto the CTE.
I've had many head injuries andI know that there's probably
some chronic traumaticencephalopathy.
I get one on there.
But yeah, we need research inthis area.
Speaker 1 (34:05):
So you're writing a book and I want to talk about
that.
What has that process been likefor you?
Me, writing my book was verytherapeutic.
It was very therapeutic.
So how's it been for you?
Speaker 2 (34:16):
Well, that's how it started for me was therapy I
(34:38):
mean, writing is very cathartdial into.
You know, the central story,which my central story is.
The accident that nearly killedme, paralyzed me for a period
of of time and then I defiantlytold that the doctors I'm
walking out of the hospitalafter they told me that I'd
never walk again.
I did walk out of the hospital.
I took four steps with crutches.
I proved them all wrong.
(35:00):
I went on to make history insports.
I'm writing about that aspect.
When you write and you'llnotice, you expose yourself to
the world.
You expose yourself, your story, you expose yourself to
criticism, naysayers, most ofwhat I'm going to write, people
are going to go.
He didn't do that.
Or creative license with the wayI tell the story when I say I
(35:25):
grew up poor and my fatherabandoned our family when I was
four and my mother struggled inthe 60s to raise two kids on her
own with no help from them.
And there were days where mymom tells this story my sister
only got $500 for Christmas oneyear from our grandparents and
we knew that mom was strugglingto put food on the table and she
(35:49):
heard us talking through mysister's door about what we
could each do with our $5 to buygroceries, to buy a hamburger,
because mom could do a lot withhamburger, you know.
We could buy eggs because wecan eat eggs for dinner and we
can eat eggs for breakfast, andthat's how poor we were.
There was typically more spacein our cabinets than there was
food when I was growing up, so Ican tell that story.
(36:10):
But again, the neighborhood thatwe grew up in, which was a nice
nuclear family neighborhood, wewere one of a few families on
the block that didn't have afather and you know that was a
significant impact for me and Ican touch on so many different
things with my book and mystories.
But yeah, it's hard to knowwhat to focus on and where to
start, where to end, how muchdetail to put into this, that
(36:32):
and the other.
But it is therapeutic.
I'm going back over oldmemories that have long since
been forgotten, so I don't bringtears to my eyes in a good way
and a bad way.
Speaker 1 (36:42):
Yeah, so you said that you wanted to do some
motivational speaking.
What do you hope to achievewith that, and have you already
have you started?
Are we doing speakingengagements?
Speaker 2 (36:54):
I did my first at the University of Oklahoma Health
Sciences Center, which is myalma mater.
It was a year and a half agoand it was a huge honor for me
because it was one of theprofessors that I had studied
under.
Gave my speech, I told my storyand the great thing about this
story is that I shouldn't havebeen in the program that I
(37:16):
graduated from.
My grades were horrible, butsomehow this lady saw potential
in me and I told her during theinterview process if you give me
an opportunity, I promise Iwon't let you down.
I graduated at the top of myclass not at the very top, but I
was in the top of my class.
She gave me that opportunityand when I told that story under
her lectureship and some peopleconnect to me after the fact
(37:39):
and just tell me how moving mystory was to them One young girl
said that she had been trainingfor the marathon at their Plum
City Memorial and this gave hermore inspiration to want to go
do that race.
Just hearing my story andknowing that you're fully
capable of doing anything.
So that's really the gist of mystory is don't give up, don't
give in.
Go forward and find somethingdifficult to do, because that's
(38:01):
when you really discover mostabout yourself, is during the
difficult times.
Speaker 1 (38:05):
I have one more serious question before we put
you in the hot seat for the FastFive.
Ok, the Fast Five is all funquestions.
Notice how I did the series ofF words Jen, Fast Five, fun, OK.
So the last serious question,though, is where do you see
yourself in the next five years?
Speaker 2 (38:24):
I see myself on stage a lot.
I see myself signing my bookfor people and not for
self-recognition.
As much as I want those sameconversations.
I want people to come up to meand say your story inspired me
to do this.
That's what, if I can say, allthe suffering was worth one
(38:44):
person coming up to me sayingthat they're inspired by my
story.
That's truly worth it to me.
That's the price that I pay,going through everything that I
go through, to hear that.
But it's not forself-recognition or, you know,
pat on the back.
I definitely see myself outthere telling my story,
motivating the masses, becauseit is, even from my point of
(39:05):
view, a moving story.
I definitely want that to takeplace and I think with my
persistence, perseverance andperspiration, I will make that
happen.
Speaker 3 (39:14):
Tell us a little bit about your golden doodle, Shelby
.
How does she bring joy to yourlife?
Speaker 2 (39:20):
She's so awesome.
She follows me pretty mucheverywhere I go.
I can't go out the door withouther scratching it if I close it
behind.
The funny thing about this dogis that I have a home health
that comes in three times a weekworking on that, but also that
we're trying to heal up for thepast couple of years.
She absolutely loves my nurse,my nurse loves her.
(39:42):
I have a new wound care teamthat comes in.
It's a male and a female.
They tag team and they loveShelby and Shelby loves them.
In fact I live on a propertythat's an acre and a quarter and
she's got an underground collarthat she can wear to kind of
keep her in the perimeter.
But she tends to do what I callgo off-roading, where she is
(40:06):
kind of a social butterfly andshe'll go over and see the
neighbor's dogs and myneighbor's dogs come over and
see Shelby and it's just.
We have such a greatneighborhood.
But for me personally, becauseI have PTSD on my bad days,
she's right under my feet.
It's like she senses and sheknows and one of the things that
they tell you with this diseaseis, if you have a pet, stroke
your pet pet on your pet forhalf an hour or more a day
(40:29):
because that is therapeutic.
That helps relieve your stress.
It's very calming for you andfor them.
She's just my constantcompanion.
She's a 70-pound lap dog.
I like to say Up and down onthe furniture, that doesn't
bother me at all.
I just want my girl near me.
Living alone for so long it wascomforting to have her here
with me.
She's not the perfect dog, butshe's perfect for me.
(40:51):
I think that's really all thatmatters.
Speaker 1 (40:53):
I love it.
Shelby sounds like the wholevibe for the whole neighborhood.
She sounds like a therapy dogfor the entire neighborhood.
I love that.
I love that for you, I lovethat for your neighbors, I love
that for your care team.
Speaker 2 (41:11):
I love that for Shelby.
Let me one last story about thedogs.
In the fall my neighbors to thenorth of me have two dogs,
summer and Tilly, and in thefall I'll be watching football.
I'll have my back door open towhere Shelby can go in and out.
Neighbors will go to a footballgame and I'll be watching the
dogs.
And all of a sudden the dogsjust come walking in, sit on my
feet and we're watching footballand at one point in time I
thought I was going to end upselling my house.
(41:33):
I said you're going to have totell the new neighbors that move
in that if they leave theirdoor open they may have another
morning guest come in.
But eventually they'll learn tolove these girls.
Yeah, they absolutely love.
When I say let's go see Summeror Tilly Bell, she gets her tail
wagging.
We go over and they have fun.
That's your playtime.
Speaker 1 (41:50):
If you could go back and talk to young Steve before
all of life happened and Stevegot his diagnosis, and give
young Steve some advice aboutthe future.
What advice would you giveyoung you about the future?
Speaker 2 (42:04):
Pay more attention to my education.
I was not the best student whenI was going to elementary and
high school.
A lot of that had to do withsome of the trauma that I went
through as a kid, you know.
I ended up living in a coupleof different households when I
was younger, so I had someabandonment issues and I was
never the best student.
But once I got my wheelsunderneath me, I hit college.
(42:26):
I put myself through college.
It was the first to graduate inmy family.
My grades turned around and thelast three years of my college
career I don't think I ended upwith anything less than an A or
a B.
So yeah, I finally figured thatout.
I wish I would have figured itout sooner because I probably
would have gone deeper intomedicine At.
Yeah, I finally figured thatout, and I wish I would have
figured it out sooner because Iprobably would have gone deeper
into medicine.
At one time I thought I mighthave wanted to be a PA or a
physician, just because I lovethat aspect of the human body
(42:49):
and treating people.
Speaker 3 (42:50):
Okay, this one's a fun one.
What's your ultimate pizzatopping combo?
That's it.
Speaker 2 (43:00):
There used to be a pizza place called Ken's here in
Oklahoma City or in Oklahoma,and they have spicy sauce.
You can't put any topping onthat.
That is not good.
I mean, you know, a spicy pizzasauce is awesome.
I was talking to my mom aboutthis the other day because she
loves pizza.
In fact, when I was in thehospital there was a sign that
said please bring a pizza to myroom, but the sad thing was my
(43:22):
mouth was wired shut so Icouldn't have eaten it.
You know I love pepperoni, Ilove jalapenos and I love
mushrooms I mean, you can throwthat on there and, of course, a
good dose of cheese.
You know you've got to have thestringy cheese when you pull
that, but yeah, that's probablymy favorite.
Now I have had deep dishes inChicago at Udo's, which is good,
but I'm more of a thin crustkind of guy.
(43:43):
But yeah, gotta get my pitbloody.
Speaker 3 (43:45):
Thin and crunchy all the way.
Speaker 1 (43:47):
Yeah, I'm from Chicago, so the deep dish, the
Chicago style pizza, I get it.
It's a lot of cheese, it is alot of cheese right in your
mouth, right up front, rightaway in reverse pizza.
But just watching you describethe pizza, like you were glowing
, I could tell your love forpizza and I was getting excited.
I was like he talks about food,like I talk about food and you
(44:08):
got happy.
I love pizza.
I also love pizza.
Thanks to the it's a real thingI will be getting pizza today.
I will be having pizza today,so humor me If you could sit
down with any historical figureor inspiring person for coffee
and you only get 10 minutes.
Who are you sitting down with?
(44:29):
What are you talking about andwhy I?
Speaker 2 (44:32):
was asked this question in sociology in college
and I go back to the same guy,abraham Lincoln, I think, having
a coffee with that guy.
I mean he was, he grew up inthe middle of nowhere, he
studied by candlelight, hebecame a lawyer in the backwoods
of Illinois and I would justwant to know what motivated him
(44:55):
to do what he did and, to youknow, want to be president,
because the guy made such animpact for our country.
I would want to talk to himpresent because the guy made
such an impact for our country.
I had one talk to him.
He just was such a historicfigure for our country, mainly
just to see how tall he reallywas.
Speaker 1 (45:08):
They said he was, was he seven feet?
Speaker 2 (45:11):
He was very tall.
I know that.
I've seen pictures, historicalpictures, where he's towering
over everybody and then he'sstill on the stone pipe half,
which even elevated him thatmuch more.
So, yeah, and I'm 5' everybody.
And then he's still by path,which even elevated him that
much more.
Speaker 3 (45:22):
So, yeah, and I'm five, seven, so I know I'd be
looking at that I'm five, two ona good day, so I can only
imagine he just has to look likea tower of a man yeah yeah,
yeah, that's clear.
Speaker 1 (45:34):
That's two feet easy.
Taller than me, because I'mwell foot, it's a foot, a full,
full foot.
But I'm going to say two feetbecause I won't complete.
They won't give me six feet,they will only give me five, 11
and three quarters.
And so I will take the five, 11and three quarters.
Speaker 2 (45:51):
I could probably get another eight to an inch five,
seven and a half feet with mysocks.
Speaker 3 (45:58):
Steve, it was a pleasure to have you on.
Thank you.
It was a pleasure to have youon Thank you.
Speaker 2 (46:01):
It was a pleasure to be here and talk to you.
I don't get out of the housemuch, so when I get the
opportunities to do theseinterviews, it really elevates
me.
My mind has been off my footthe entire time.
I still feel, it's stillhurting, but yeah, these
distractions are the small joysthat I get in life, and this
(46:21):
will impact me for the rest ofthe month, if not further down
the line.
Speaker 3 (46:25):
Thank you, thank you so much.
All right, spoonies, until nexttime.
Don't forget your spoon.
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