Episode Transcript
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Andrea (00:00):
Hey there, friends.
Welcome to spitefully yours with
me, Andrea Welker, your residenthealth care advocate. I invite
you to join me as we discusshealth care and the patient
experience in a post COVIDworld. Get ready for captivating
conversations about health,wellness, patient advocacy, and
everything in between. Let'sredefine what finding good
(00:21):
health means together.
Listener discretion is advised.Well, folks, it's been a busy
week, and I know I'm gettingthis episode out a little late,
but it's because I had a lotgoing on. I had a few doctor's
appointments and things, butnone of that matters really.
(00:42):
What does matter instead is whatI told you I was going to
provide you with, and that waswhy Arya Stark is my favorite
character from Game of Thronesand how famous line from this
series became one of my mantrasduring the worst year of my
life. Can you guess which one?
When Arya Stark was learning howto train with her sword from
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Syrio Forel, in the firstseason, Syrio had taught her how
to fight in the Bravos style.And when they were outnumbered,
he looked at her and he said,what do we say to the god of
death? Not today. And that is aphrase that she adapted through
her entire run of the series.And that is a phrase that I
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found myself reciting from timeto time.
And as Arya would go throughthese different trials and
tribulations, one of the phrasesthat would come up was this one.
What do you say to the god ofdeath? Or what do we say to the
god of death? Not today. And itwas very pivotal for me.
It was very profound because itreally helped me remember who I
was inside the illness that wascrushing me and dealing my life
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from me and my essence. And Iwould I would say things like,
will will this kill me? Nottoday. Will this keep me from my
goals? Not today.
Will this you know and and itjust became something I could
reference and sink my my thingsinto and just hold on for dear
(02:16):
life, because I knew if I couldjust keep myself mentally aware
and sharp, I could hang on foranother day. And there was a lot
that happened during that time,but I don't wanna get too lost
into it, but that's why you'rehere. Right? Well, one night it
actually got so bad that thedepression started to really get
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to me and I was alone. And Ijust remembered thinking like
this could all be over.
And if you are anyone who's everdealt with anxiety or depression
or mental illness or chronicillness or chronic pain, You
know exactly what that phrasemeans. This could all be over.
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And I sat there and I thoughtabout it, and I said, you know,
not today. I can't do this tomyself. I can't do this to
people I love.
I can't, I can't surrender whenthe odds seem insurmountable,
when it seems like I'moutnumbered, when it seems like
there's nothing left for me togive, I can't give up. And it
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kind of became this this joke. Iwould get depressed or feel
sorry for myself, or I wouldjust go to this place that I
didn't like and where I feltlike I was surrounded by this,
you know, army of incompetentphysicians and people who didn't
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care and people who are willingto just let me die or just keep
striding me along. And I wouldlook at that and I would think,
what do we say to the god ofdeath? Not today.
And that helped me remember tohang on every time something bad
would happen, and I would justget caught up in that mess of
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the what ifs or the panics orfear. And what I would end up
having happened was I would sayit. So it worked for me and it
was really beneficial and reallyhelpful and I really enjoyed it.
So it makes me want to ask you,what is your work? Do you have a
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famous line?
Do you have a phrase or a mantraor something that you use to
help yourself stay in the game,to help yourself push just a
little bit longer? Do you havesomething that is really
resonating with you that youjust it just comes out in a very
pure way, like, that you justthat phrase is something that
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you absorbed, and it just becamea part of you. I would love to
hear what it is. You know, dropit in the Facebook group, drop
it in the comments, you know,wherever you can find myself and
the other Spites quad members. Ilook forward to hearing about
that phrase and why you pickedthat phrase for your journey.
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And if you don't have a phraselike that, that you can find, I
suggest that you find one foryourself or, you know, think
back to when you really neededto be, like, pumped up where you
know the odds are against you.You know that you're the
underdog. What was that time,that action that occurred that
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really helped you push yourselfforward and keep moving forward?
Because the worst thing that canhappen is when we fear death is
that we freeze. The second worstthing that can happen is that we
deny that it's happening.
And that could be reallychallenging, you know, to go
through that. So think aboutthat. That's that's the homework
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for the week. You know,sometimes it gets really rough.
So I also wanna tell you, don'tthink for a minute that your
journey doesn't matter.
And don't think for a minutethat it really is that simple
either. You know, if you'relistening and and you're in a
different part of your journeyand you say, well well, that
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that doesn't work. That's notgonna help me. You know, today,
it may not help you, buttomorrow or the next day it
might. And so that's somethingthat I ask you to consider
because I respect where you'reat on your journey.
I respect how hard it is. Irespect how frightening and
detrimental it is. And I respectthat you are here because if
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you're here, you're stilltrying. You're still in the
fight. You're still in the game.
You're still willing to look atthe god of death in the eyes and
say, not today. And that's whatI'm going to ask you to think of
going into your week is thateven though you're the underdog,
you can make it through this.You can keep going. You can be
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that person who finds yourselfin impossible situations and
receive the lucky dice roll thatkeeps you here, and I hope you
do. And in case you can't,there's going to be some mental
health links in the commentsthat I hope in the show notes
that I hope really help youbecause sometimes it's okay to
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reach out.
Sometimes it's okay to talkabout those hard things. We have
a really great Facebook groupwhere people can talk about
these things. We also havedifferent resources for you to
access that are really importantas well. That's one thing that
you'll always find here is thewillingness to talk about the
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problems, the fear, how hard itis, what it's like. We don't shy
away from those things.
That's why there's a listenerdiscretion label. But outside of
all of that, well, let's talkabout something else that I
wanna end on a good note.Because if you're like me, you
really like good news,especially when it feels like
your health and your life isjust completely off course and
(08:05):
out of bounds and out of pocket.And you don't know what ends up.
10 years ago, I had a doctor'svisit that changed my life and
the fact that it was with aprovider who only saw a limited
viewpoint of what they thoughtwas the problem.
(08:27):
And today I got to officiallyprove them wrong 10 years later
with the same test. And I haveto tell you, it felt pretty damn
good. And my first reaction,other than anger, was I wanted
to go to them and say, do youknow what you put me through? Do
you know the hell I experienced?Do you know what you did to my
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partner?
Do you know how it made me feelto tell my family that you
thought I had this incurabledisease that I do not have? The
feelings I have made me feelwhole. They made me feel and I'm
still going through all thosefeelings, but they made me feel
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safe. It made me feel like I wasright. So if you're someone
who's out there and you'relooking at your diagnosis and
you're looking at what themedical provider says they think
you have, especially when theyhave not run any tests to give
you that information, look themsquare in the eyes and say, I
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want a second opinion becauseyou deserve 1.
And my diagnosis at that time ornot my diagnosis, but they
suggested thing was a reallybrutal disease that is just
awful. It's an awful way to die,and it's an awful way to live
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truthfully. And, all they wantedto see was this one little
criteria of what they thoughtthat was instead of the full
picture of what was going onwith me. And I actually sat
there in their office, and Isaid, if you let me go home
today, I will kill myself. And Iwill never forget that that
(10:18):
provider let me go home.
And I called my boyfriend at thetime, who's now my husband, and
I said, I've got to tell yousome things. And I went home and
I called my ex husband who livednext door, and I said, I need
you to come and safeguard thehouse because I am not in a very
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good place mentally. And I justneed to have a fail safe in case
I really, really lose my shit.So he came and he got all the
sharp items out of the home and,you know, and I just sat in the
reality of how my life was gonnachange and how I was going to be
in a wheelchair and eventuallydie and all these different
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things. And eventually, theyadmitted they were wrong.
I was actually going to see themfor a workman's comp issue. I
had been injured on the job, andthat was a head injury. And I,
as a result, received spinalcord damage, and the damage that
I had was something that theyfelt was enacted by this injury,
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but it had been a disease I hadhad the whole time, and that's
not how that works. You don'tjust wake up overnight with
with, extreme symptoms of thiscondition. That's not how that
works.
It takes years to manifest andbreak down your body. So I knew
about this condition because myfamily lived with it. But they
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just, they, they just did nottreat my head injury. And as a
result, unfortunately, I hadlong term deficits from that.
That took me a very long time toovercome and adapt to.
And if you met me now, youwouldn't know it. You wouldn't
know that I have a brain injury.You wouldn't know any of those
things. But if you knew me thencompared to now, you would know.
(12:11):
You would be able to see it.
So I remember, and I'm sorry I'mbouncing around a lot with the
story, but it's just so much.This one instance is so much to
tell. And it's a lot for me andI don't want to get too
emotional where I stop beingable to tell you, because it's
also important for providers. Wehave some amazing providers who,
(12:34):
and healthcare professionals wholisten to this show because they
want to learn about ourexperiences. So part of why this
is largely unedited and raw isbecause I want them to see what
our thought processes are like.
When you have brain injuries,when you have traumatic events
that happen, where you go, whereyou have to compartmentalize
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mentally to see it. So itbasically shattered me and it
made me lose all trust inhealthcare providers at one
moment. And I called my primarymy primary doctor at that point,
and he had been my doctor for,like, 10, 20 years at that
point. And he treated a lot ofmy family. And so he he kind of
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was just like, that's what theytold you?
Like, that's that's not how thisworks. That's he said, I agree
with you. I don't think that'swhat you have. And I said, well,
I'm freaked out, and I reallyneed I I need some help with
this doc. Like, I'm I'm I'mfucked up.
And so I went to see him. I hadan appointment. We did blood
work, and he basically ruled outfrom my blood work perspective
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what they had told me I had. Andthat made me feel really good
because it was traumatic as hellto tell my family I had, you
know, that the doctors thought Ihad this incurable disease that
would kill me, that I would endup in a wheelchair, that I would
go through all these differentthings. And seeing how it had
killed my other family members,I was not happy.
(14:06):
It was lazy medicine, what theydid to me. And the day I got my
revenge, I got to to say I wasright, and I got to say that
things, you know, listening tomy body paid off. And there's
more to the story, but I don'twant to tell you so much that I
(14:28):
get overwhelmed because it'slate, and I wanna go to sleep.
But I just wanted to tell you,if you feel like you have this
dogged determination, thisdrive, if you know something
inside you doesn't feel right,follow that trail. Follow that
trail.
Seek a second opinion, a thirdopinion, or 4th opinion.
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Whatever it is you have to find,you find it because sometimes
there's no greater payoff than apeaceful mind. And my test that
I had done recently, it wasbroken up into 2 parts because
it was an EMG study, and you youcan do them all in one day, but
it it's it's really painful.It's like you're getting poked
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and prodded with electrodes andelectrical current, and it's not
very pleasant. And my provider,he did a a good job.
It was minimally painful atbest. He he did a good job, and
he just told me. He said, youknow, your problem is not that
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basically, and your your EMG isnormal. And I just sat there
with this stupid ass smile on myface, and I'm sure this doctor
probably thought, like, why isthis woman smiling when I tell
her their test is normal?Because he knows I want answers.
He knows I will pursue the truthuntil I find it. But all I could
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do was sit there smiling becauseI remembered how broken that one
medical provider had made mefeel all those years ago and how
difficult that experience wasfor me and how awful it was.
And, you know, sometimes we haveto choose our mental health and
what's best for us instead ofpursuing action. So the fight I
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had with that provider, I had tolet go, and I've been told since
then that they've improved, butI don't think I could ever
forgive them. And I know peoplesay you have to forgive people,
but the truth is you don't.
You can get closure withoutforgiving people. As long as you
forgive yourself for youractions that you may have had,
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if you need to, that's all thatmatters. You don't have to
forgive other people. All youhave to be able to do is to
forgive yourself. And today,maybe that's what I got.
I forgave myself for even forhalf a second, believing that
that provider had been right.Really grateful. I'm really
grateful for that because theroad to diagnosis is a bumpy one
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and it's not always easy. Andit's something that's really
challenging and really difficultand frustrating because
sometimes, you know, something'swrong, but you may not always be
able to tell, but all you can dois really what you can do. So
you have to keep going and youhave to find an answer.
And so that's when I did, andI'm grateful that I did. I'm I
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had feared getting a repeatversion of this test for 10
years, 10 years. It wasterrifying to me. It was so
fucking scary to me. And now Ifind out that my test was
normal, and I can't get ever howdamn good that feels.
So I wanted to share that withyou. So I just wanted to tell
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you this week that wherever youare, it's okay. It's okay
because eventually you'll getyour answer. And if you don't
get your answer for what's goingon, you will get it eventually.
And sometimes it might evenleave you with more questions,
but the difference is the nexttime it happens, you end up
looking forward to the journey.
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In some strange way, it allstarts to make sense and that
helps offset those bad days whenthey happen. Well, spite squad.
That's the show today. Don'tforget to like, subscribe, and
share to spread the message ofhealth and wellness advocacy. If
you'd like to support mymission, you can contribute via
(18:29):
the links in the episodedescription.
You can visit my website,inspitewetrust.com, for more
information. Together, let'scontinue redefining what good
health means. Until next time,stay empowered, stay spiteful,
and keep pissing people off.I'll see you next time.