Latest / Giving Pain Purpose with Lyndsay Soprano / Understanding The Many Faces of CRPS

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Understanding The Many Faces of CRPS · Giving Pain Purpose with Lyndsay Soprano

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This is Your Pain Game podcast where we talk about the game of living in
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and with chronic pain and trauma, getting to the heart of how to heal.
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I am your host, Lindsay Soprano. On the show, I plan
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on discussing with doctors, chronic pain patients, holistic practitioners, loved ones,
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and anybody that is interested in having their voice heard. In the chronic pain
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and trauma world that we live in. There are many faces to see RPS,
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and every face that I meet who has CRPS, like myself, has
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stains of tears on their cheeks because this horrific disease is incredibly painful and debilitating
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as it manifests itself right, and you know, each person manifests theirs or
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of course any other painful disease or cancers, whatever, anything that happens to
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us, any trauma, we manifest it differently. Everybody is everybody. I
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say that all the time on the show. Every person is different, and
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we cannot judge one other person from another based on how we are perceiving our
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pain or how we've experienced pain. And as you guys know, those that
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have been listening for a couple of years, I am almost eight years into
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this diagnosis of mine, and I am living proof that you can push through
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pain by changing your mindset. And that has been a struggle recently with me.
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As you guys have listened, I've been really challenged with my mindset and
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I've gotten some boosts back again, and Lindsay's feeling like she's back in town,
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you know, because some of those days it's a bit to push through
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the most challenging thing that I have been faced with in my life. And
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I have been faced with so much stuff. But what's the alternative? What
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is the alternative to us pushing through pain? I know what it is because
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I've been in those dark and twisty places and it is not pretty, and
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so we will not go there on the show. We'll talk about it,
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though, but we won't let any of us go there. So today I'd
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like to talk about how we can break through this gut wrenching pain that we
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live in when we're suffering, and how we can give our pain purpose.
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That is what I am here for, to give my pain purpose and to
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give your pain purpose as well. So, without further ado, i'd like
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to introduce you to my guest today, Audrey Marie who also suffers from CRPS
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medical PTSD. We're going to get into this and FNSD also going to get
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into that. Audrey. It is amazing to have you here. It took
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us a while to get our schedules, our CRPS bodies together, to get
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this put together. We made it. We made Audrey is an author,
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an anti trafficking advocate has a passion for helping those who have experienced trauma.
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She is working towards her Masters in Homeland Security and Emergency Preparedness to gain more
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knowledge in mitigating crises, to help protect and educate, and most importantly advocate.
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At the age of seventeen, a relentless and excruciating pain struck Audrey.
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Her world was suddenly turned upside down by the invasion of a really gross lump
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in her armpit. That's the pits. I couldn't help it, couldn't sulp
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myself. Surgery after surgery was just the beginning of what she was going to
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face for the rest of her life, a life in pain. And that
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is a hard thing to accept and it's something that I've had to accept as
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well in my world. She's written a book, her debut memoir Chronically unstoppable.
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How my life went from fight or flight to free and it is a
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true life journey of strength and pain and revitalized hope. And you know,
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we always talk about hope on this show, and we'll get into that a
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bit later. So I am rolling out the red carpet for you, babe,
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and I'd like to start talking about what happened to you with this,
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the pits, the invasion of pain, and what led up to that,
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and let's kind of take it from there. Thank you so much for everything
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that you said for that. You know, when I was in high school,
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I started doing theater and I loved it. I fell in love with
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acting, and you know the amount of friends that I made all of that.
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Something that's a little bit tricky is that when it comes to acting and
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doing theater, you're in these heavier costumes, especially high school theater, right,
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because a lot of these costumes are from some goodwill or something, and
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so they're these thick costumes, right. And I was wearing these costumes with
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the stage lights kind of coming down on me and that causes a lot of
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sweat just naturally, and you're also performing, right. What happened was I
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started to develop this lump literally on my armpit. It started super small,
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and then with each you know, dress rehearsal, each show, it was
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getting bigger and bigger. I kind of decided to just ignore it and to
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kind of do my life, right, I'm about sixteen seventeen at this point.
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Nothing's gonna stop me, you know, I'm living my life. And
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after my final show, I went to go and check it in the mirror,
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and I realized it opened, and it was just this huge opening,
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incredibly painful, incredibly painful. And that's kind of when I, you know,
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brought it to my mom and I showed her, and she had this
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sudden kind of concern on her face that you know, Mom's trying not to
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show, right, but us kids can kind of also see it the level
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of concern that we see. Yeah, but if they think they're hiding their
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feelings from us a little bit more us exactly exactly. So then that's when
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I went to the doctor and they recommended surgery under my armpit, and so
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it was kind of this moment of what does that mean. I had never
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had surgery before. I was an overall really healthy kid, uh, And
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I was absolutely utterly terrified I went to the hospital and for surgery, and
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they noticed that there was a lump under my left arm, and they were
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like, you know what, we're just we're already going in there, let's
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just go in the other arm as well and take that out. Of course,
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you know, naturally to them that's so simple and easy. But it
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was kind of the worst decision of my life. Having listened to them,
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and you know, not ask many questions. I was young, I didn't
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know too too much. I went in for surgery and I came out and
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they said it looked great. The only tricky thing with armpits, right,
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is that you can't stitch an arm pit up, so you have to leave
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it open. And that's something even after surgery that's insane. So they like
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they open up your armpit and they just leave it open, like what are
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your arms above your head? Like for like the rest of your life.
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What the hell? This is insane? Exactly exactly. It was kind of
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this you know, moment of yeah, what the hell's going on here?
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Oh? Impossible? And you know, I didn't know very much. I'm
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high, coming off of you know, sedation. My mom's in there listening
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to everything, and I remember hearing something about oh, aftercare, and I
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just kind of ignored it because you know, I knew surgery came with after
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care, so I just kind of, you know, pretended it wasn't there.
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My key useful thing not useful as avoidance. So I'm just kind of
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avoiding it all and I don't really am not worried about it. And the
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next day rolls around and I'm sitting on my mattress in the living room and
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my mom comes down and she says, Audrey, would you you know you're
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we're ready to take you upstairs and help with the wound. And I wasn't
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quite sure what she meant by that, but I got up, I took
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my oxy, and I went into the bathroom and she told me to go
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in the bathtub, which I thought was super odd at that point, kind
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of of like that's a weird place to do it. You also don't want,
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you know, a wound to be wet, right, you don't want
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a bacteriy and like what all the soapy weirdness, but you don't want water
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on it. But she said that the surgeon recommended to go into the bathtub
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because the water would help take things out and That's when it kind of clicked
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of this is open, but it has some medical surgical supplies in it.
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And I froze for a minute. And I got in the water after a
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long kind of crying argument with my poor mother, who's just trying to get
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it over with as well. And I get in the water and I'm like,
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jeez, I don't feel anything. I didn't feel any pain. I
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didn't feel anything. So I was like, this is going to be easy,
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right, and we kind of toughen ourselves up a little bit and do
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it that way. I lifted my arm and my mom started to kind of
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pull and that's when I fully remember is when I checked out for the first
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time. I shut down. It was probably a thing of surgical supplies about
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you know, this long or so, and it got pulled all the way
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out. Yeah. Yeah, if you need a dixie cup, everybody get
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a dixie cup out. Yeah, just kind of we're gonna, yeah,
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try not to think about it. This episode sponsored by dixie Cup. If
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you need a hurl, hurl in the dixie cup. Yeah. So,
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I mean it was it was one of those moments where you know, I
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moved out of my body. I let it happen, and then I realized,
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Hey, there's the other side that has to get done as well.
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And my mom kind of looked at me and she said, you know,
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you can scream as loud as you want to scream. We're going to get
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this over with. And it was kind of this moment of a level of
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strength I had never needed to have before, which I know so well at
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this point, but that really was this first moment that PTSD really began to
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take its toll once we had to continuously, you know, re repack,
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retake off and over and over and over again. So that's kind of how
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that original PTSD started, and it eventually led into me getting CRPS because that
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wound stayed open for a whole year. I can't even imagine how is yours?
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Yours? Yours is fairly localized in your CRPS, right, Is it
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in your just in your arms or it goes down to my fingertips? Yeah,
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your fingertips, yeah, so it's up in that. So like we
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both have the similar CRPS in nature. But that's what's so interesting. That's
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kind of why I opened up with CRPS has many faces, and I kind
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of like threw that in because it does we I know one of my best
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friends on the entire planet has CRPS and she has it so different from mine
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but also so similar. And then you and I speak and it's like,
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God, we have so many things that are exactly alike, and then so
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many things that are like what how That is so nuts? And because it
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is such a noro logical disorder on top of the physical part of it,
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it is a complete mind fuck. I mean it is. There are days
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where we wake up, you and I both We've talked about this on text
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and everything, like we wake up and we're like, wow, this is
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a great Nope, it's not going to be a great day after all.
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And we have to EBB and we have to flow, and that's how our
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bodies manifest it, and sometimes it changes from hour to hour, and we
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just have to kind of like go with the flow and be prepped and be
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calculated, calculated about what we are going to be able to do minute by
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minute, hour by hour, day by day. And it's hard for us
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to make plans. It's hard for us to like, sure, I'll commit,
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and then I feel really really guilty when someone's like, hey, i'll
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see you in two hours and I'm like, oh my god, I've been
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waiting so hard to be able to like pull this off, and I can't.
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And that is something that's really challenging when you live in chronic pain as
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a whole is putting together these calculated measures and these calculated plans and order for
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us to be able to like ebb and flow and be part of this world.
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It's nuts so completely well, and that's what makes treatment so difficult too,
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because everybody is so different exactly, so different for each individual person.
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Yeah, no, it's it's so hard. So what happened? Then after
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we've got you're pulling out like like a clown's pulling out flags out of his
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like bunny hat out of your armpit. It's like a magic trick. That
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is how I mentioned it in my book. It's like a magic trick.
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D I really did, I really did? It was. I love it
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And I haven't been able to read it yet because we got it doesn't even
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matter why, but I read portions of it on Kindle and I'm like that
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that's a good representation of it. I just felt like it just kept coming
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and coming and coming and coming right right, yeah, yeah, I mean,
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and and you know the fact that you have to kind of continuously,
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you know, fix the wound and tend to the wound and doing all this.
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And remember this is just my mom, who isn't who isn't you know,
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educated and she's nurse, she's not educated in nursing or anything like that,
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and what was you know, the struggle with this specific issue is that
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it wasn't healing. And it's really hard to heal that area in general,
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right or if you think about kind of how much you move your arms and
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how much your armpit actually flexes, which is so something you wouldn't think about
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unless you have something open. It's all the time. And so that's something
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that makes it really difficult. So we started contacting the surgeon and saying,
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hey, it's still not closing. He was doing his thing of yeah,
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yeah, yeah, it'll close, right, like it'll it'll close. You
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just keep caring for it. It'll It's kind of that posture that he had
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overall in months and months and months passed by, and I was a senior
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in high school and we're continuously kind of saying, hey, it's not closing.
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I'm starting school by throwing up in the morning, I'm ending school by
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crying. I am still though, doing theater, so I'm still kind of
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pushing my body anyways, So I'm sweating, right, I'm working out all
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of that. So I'm still continuing my life because I started to do this
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you know thing that I feel like so much of us are familiar with,
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of just gaslating ourselves. Right. And finally we were like, hey,
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we're going to go to a different surgeon because clearly something goes So we go
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to we go to a different surgeon, thank god we did. But we
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went to a different surgeon who worked actually under the surgeon that I had already
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seen, and before she knew that he was the one who did the surgery,
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she I lift in my armpit and she goes, who did this to
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you? Oh? And I'm sitting there like what he's doing this to me?
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What does it? What did I just hear exactly? So I,
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you know, I say who who the surgeon was? And she shut off.
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She didn't say anything else about what was going on with it. She
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didn't do anything like that, And so that was something that you know,
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I I remember kind of seeing her and thinking, oh, man, she's
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not gonna you know, she's not gonna complain about this because of you know,
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the hierarchy of the medical system. And we could go on for that
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about hours, but you know all of that. So I got the surgery,
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and it took a solid about six months to get it to close.
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However, she followed that was after your that was after that when the new
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doctor came in. Okay, so this whole time, how long had that
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gone by? So that problem took us all of like three or four months,
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and then another six months and then so basically, yeah, exactly,
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exactly, yeah and inane. And the difference was that I saw her probably
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twice a week. I was seeing her constantly with her, you know,
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attending to it, helping my mom, giving us different things, which was
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so clear that there was such this difference of oh she can, she can
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get it to close. But even though that did end up closing, within
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it probably three I mean, it was such a short time. But within
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three weeks after the second surgery, I was sitting in math class. I
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remember the key point. I'm sitting in math class, I'm talking to my
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friend. My teacher passes out homework. She says, right, you know,
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start working on your homework. I take the pencil and I couldn't write,
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and it was this overwhelming sense of pain and lack of control of my
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body. And I remember being terrified. I didn't know what was happening to
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me. I didn't know if, like something else was going I mean,
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I had no clue, and your brain starts to run. I'm seventeen at
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this point, I'm young, and this was something that I remember. I
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looked at my friend and I was hoping she didn't notice the fact that I
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was having so much trouble. And I'm sitting there trying to debate on kind
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of what to do, and I put the pencil down and just didn't do
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the homework. It was like, maybe something's up the armpit's still given trouble.
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I don't know, so I kind of talk. I mean, neurologically,
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when you're cutting into nerves and stuff, it makes sense that you would
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have she's with your hands in your arm right, and that's what And I
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remember telling my you know, my mom, and she was very much like,
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yeah, the exact same thing of yeah, you know, it's healing
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all of these things. But in the back of my mind it was a
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different level of pain that I had never felt and it was this burning and
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this deep to the bone pain that I know so well at this point,
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and I'm sure you know so well, and I sure do. I feel
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like my bone marrow is on five twenty five hours a day exactly. So,
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so it was definitely this inner struggle with hey, something is clearly not
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right and being told, you know, maybe it's the surgery, maybe it's
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those sort of things that's causing it, but it the decline happened so fast.
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Within a month, I was at the point of not lifting things.
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I was tremoring all the time. I couldn't write, I couldn't do fine
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motor skills. But then more importantly the pain I could not I could not
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tape. And it kind of put me in this moment of, well,
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what the hell do I do now? Because I did the surgery like they
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said, I did the treatment like they said, Like, what is going
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on? And I'm sure you know that before you kind of get that diagnosis,
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you get a ton of tests done on you. They want to test
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for even some random, you know, disease that could possibly potentially cause something.
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Yeah, and when you're when you're in that kind of debilitating pain that
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you and I know as men if our listeners know as well, and the
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listeners listen to this show for their loved ones as well, which is interesting.
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I've been doing analytics on demographics, by the way, and it's like
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so many men are listening for women. And it's a really interesting shift with
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dynamics or with demographics, because I've been watching it and I've been getting emails
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from people about how they're listening to help other people, and I absolutely love
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that because that's what we're here to do. But when you're in this kind
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of pain and you feel hopeless and you don't know what to do, and
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all you're given is like, go take this pill or go have another surgery,
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or this is just how it's going to be, You're like, there's
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no way, this is how it's going to be, Like give me a
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fucking break. I will not live like this, So how do we do
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that? And You're like me, you and I would immediately when we did
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our meet Ingrahamy, you and I are cut from the same cloth as far
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as like we're going to get through this no matter what. We're going to
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have our crap days. And you and I both have experienced those stuff recently,
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but those crap days really make a good days amazing. And what I
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struggle with in pain management is on those good days, I want to do
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as much as I possibly can and enjoy. But I know, like you
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and I have talked about, is the calculation behind that. We know that
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if I put this gas, this much gas into my body and I use
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it up, I'm going it's gonna take me two to three days to refill.
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And that because my tank doesn't fill up in six minutes like everybody else's
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does, it takes two days to do it, three days to maybe do
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it. But is it all of that fun and that that excitement or whatever,
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even vacuuming my home or whatever it is I want to do, is
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it all worth the two days? Sometimes it absolutely is. And so it's
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like picking and choosing what's the most important thing and the most important people that
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we want to go spend time with or do things with. But it's not
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because we don't love the other people around us. We don't love the other
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things. We have to legitimately be calculated about how and who we are going
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to be with, what we're gonna do, who we're going to allow into
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our world because we know those people are gonna make I just want to blow
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our brains out. We know we're not going to go hang out with those
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Trump supporters. We know we're not gonna go do this. We know we're
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not gonna do that, right, So we make these We make these decisions
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because we know how how fragile our bodies are with our nervous system, and
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how we are affected by the smallest things. And I don't love that about
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this disease, but it's something that we've had to learn. Yeah. Well,
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and that's why pacing is so important. It took me months and months
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of treatment to figure out pacing because exactly the minute you feel great, you
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are gonna run. But the problem is you're going to burn yourself out.
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And I talk so much about having pain in that driver's seat all the time,
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and how important it is for us to get into the driver's seat and
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kind of kick it to the back, because when it's in the driver's seat,
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that's when it becomes you know, us running, running, running until
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we can't run anymore, and that's how we collapse. And so that's why
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that's so absolutely beyond important. Yeah. Well, and you are wise beyond
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your years and you already know that she sounds like she's far older than me,
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and that's a compliment actually, but you know, I mean that's extremely
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wise. Like we do. We wake up and we're like, all right,
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because my legs are named Thumb and Louise, my left thumb and my
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right is Louise. And we have a little conversation every morning when we get
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up. We're like, all right, bitches, what are we gonna do
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today? You know, what can we do to get this body moving and
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to get to work through whatever pain? We're going to deal with, whatever
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it is that comes at us. And I so interesting because I end up
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putting Thumb and Louise in the driver's seat first before I choose, and I've
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recognized that, and then I'm like whoaa whoa like you said, kick it
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into the back seat Thumb and Louise, even though they're known for being in
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the front seat holding their hands, jumping over a cliff, putting them in
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the back seat and let me drive and go, hey, you know what,
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let's go down here and go to the bar instead, right, or
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let's go to Nordstrum, or let's do some other than jump off a cliff.
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Seriously, seriously. And I feel like that's what's so empowering about,
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you know, knowing that you have those you know, Felmo and when we
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use in the back seat, knowing that they're in the back seat and you're
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still doing what other people might not have in the backseat and you're still doing
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what they're doing. That's what's so empowering. And that's what's so important.
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It is. And I kind of feel like a bad us on some days.
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I'm not gonna lie. Oh absolutely, I'm like, give me a
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break right now, all right, you know, And I don't need to
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say it out loud, but it's up in here. I'm like, oh
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God, come on, dude, right right. And that's what you know.
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And I think it's important for us to remember that no matter what,
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whether we're in bed or whether we're doing something, we're a badass, right
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because we're still in bed and we're still alive. And that's what's so key.
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Yeah, And I'm still hitting all of the balls out of the court,
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like, and I don't know, not as fast as I used to.
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Things take me a little bit longer than they used to. I've had
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to make some sacrifices and let go of some people, some clients, things
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in my life that weren't giving me joy, they were only just like stressing
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me out. So by letting go of all of those, I opened up
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more doors for opportunity to meet people like you, to start to do this
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show blah blah blah. But when we open up those places where we've kept
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people and things in our lives that are nasty and dark and twisty, and
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try to push those people out, not in the backseat, out of the
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car, and that has been super helpful for me with pain management. So
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I want to kind of move into, if you don't mind moving into a
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little bit about how you deal outside of our mindset and what we just talked
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about. But are there any things that you do outside of our mindset shifting
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and our meditation, all the things that you and I have spoken about,
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But is there anything that you do, particularly in a pain management perspective,
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that can be helpful for other people, not just with CRPS, but other
24:47
pain conditions. Yeah. So, something that I learned pretty pretty late in
24:53
my kind of treatment journey is that CRPS what makes it what I think the
25:00
absolute hardest, is that you you have to find the things that are causing
25:06
pain and actually do them. And I think that's something that a lot of
25:11
people don't think about our loved ones, our friends, our family, is
25:14
that you know, things are extra hard when we're doing the things that really
25:18
hurt and that really don't feel good. I make sure to go to the
25:22
gym, as you know, a certain amount of times a week. That's
25:26
not because oh I love the gin. Nobody loves the gin. No,
25:30
No, I don't care. If you're there, like doing your stuff on
25:33
video and whatever, you still don't love it, So don't buy to me
25:37
anymore. Nobody likes anybody. I don't believe yah any exactly. Nobody loves
25:42
the GMOs. But that's something that I make sure to take care of myself
25:48
and do it in that way because as long as I keep moving, I
25:52
notice that, you know, it might take a month, but my symptoms
25:56
actually improve significantly. And so doing things that the minute that I see,
26:02
oh that hurts, maybe it'll be a fabric that you feel. Maybe it'll
26:06
be hot versus cold water or air. Guys, this is literally what Audrey
26:12
and I are fearing. Air. That is how bad, that is,
26:18
how bad ce RPS is. We are afraid of wind and air and fabric.
26:23
Okay, if that, thank you, thank you for subbing that right
26:29
up, Because like your sheets on the top of my feet at night,
26:32
I'm like, oh my god, I'm gonna die. This is how are
26:34
sheets painful? It's nothing last night, like you just said, pushing through
26:40
pain when it comes to one of my aunts is a physical therapist. She's
26:44
amazing, and she always says told me, she's like, you just have
26:47
to keep on walking on the pain, no matter what, you have to
26:51
keep on walking. Whether it's your hands that hurts, whether it's your shoulder
26:55
that hurts, don't just keep it there. I mean, if it's medical
26:57
and your bone has broken, please keep it weird. As I am not
27:00
doctor, do not use this as any medical advice, but take that as
27:03
advice. But like you know, once you're all clear and free and keep
27:07
moving, keep doing it. Like my sweetie always says, oh honey,
27:10
I'll get up. I'll get that. I'm like if I if I don't
27:12
use them, I'm going to lose them. If I don't use them,
27:15
I'm going to lose him. And last night we went to this big fancy
27:19
schmancy thing for iHeart but anyway, we were there and we showed up and
27:23
we're all dulled up, and I couldn't use my wheelchair at this event,
27:26
and I was really nervous about it, and I, uh, we get
27:30
there and I have my cane, which I don't use all that often and
27:34
I need to be better about it. But anyway, so I use a
27:37
cane and I walk in and it is in no shoes policy into this home
27:42
that we had to go into. So here I am. I don't have
27:45
like socks or anything with me. I have to go barefoot for this entire
27:49
night. And I stood up for seventy five percent of the night barefoot like
27:55
a bad ass. I was gonna say, can we take a moment and
27:57
acknowledge everybody take a beat, and let's do a round of applause. I
28:02
was so proud of myself last night because the first night that I have gone,
28:06
you know what, fuck it, I'm gonna stand up, I'm gonna
28:08
show up. I'm supporting my sweetie and what we do and what he does.
28:11
And it was a really neat night for me to show that I could
28:17
do that, because I keep saying I can't do that. Oh, I
28:18
can't do that, and we do fabric hurt. Stepping on carpet hurts every
28:22
surface. You're looking down, Well, for me, I'm looking down because
28:25
it's my feet, but for you would be everything with your hands and anything
28:29
that would be like a purse under your shoulder. I mean, you just
28:30
think about all the things that touch our body that we interact with that you
28:34
take advantage of that. We were not grateful for the fact that we can
28:40
walk on carpet. You guys can all walk on carpet like badasses and do
28:44
ballerina poses, and I can't do that heroetta carpet. What I'm not a
28:48
monster? Well, and that's what I think is also so interesting is the
28:56
fact that once I moved out for my family house and I and I live
29:00
alone at this point. So once I moved out and I realized people aren't
29:04
going to do things for me, that's when I like flourished, was when
29:08
I was able to. And so I think it's hard for loved ones and
29:11
friends and family to find that balance between supporting and also just doing everything for
29:18
the person that ultimately harms them at the end of the day. That's well
29:22
said, because I know that you know my mom's like she's she's very sensitive,
29:25
like, oh, let me help them, Like I'm good, I've
29:26
got it, I got it. I gotta do this on my own.
29:29
It's almost like she's trying to work her toddler, trying to learn how to
29:32
walk again. It's so weird and so sad, you know, And we
29:37
have to we have to learn because we all talk about our pain, and
29:40
we all talk about we're going through, but we in fact, my sweetie
29:44
is doing one hundredth episode with me, and we're going to talk about just
29:47
this about how we can be better for the people in our lives that support
29:51
us and educating them too, about Hey, I know that you want to
29:56
help, but I really need you to like leave me the fuck alone for
29:59
just a little bit. Let me stand here at this event proud and not
30:04
be worried about me, because I need to do this for me and by
30:07
proxy for him. Right. No, that's and that's something that you know
30:12
with my book. When I was writing my book and I'm talking about kind
30:15
of this time in my life, I had never taken a moment to realize,
30:19
Wow, my mom has been through so she's got her own PTSD from
30:25
it, She's got her own stuff, right, And I know my mom.
30:29
In fact, our moms might really get along. Actually they need their
30:33
own support. And I keep telling her. I'm like, hey, I
30:37
go to therapy. I talk to people about this, Like who are you
30:41
talking to about how to appropriately like support me and also support you because the
30:48
people that are in our lives and I feel guilty about that. There's like
30:51
this guilt shame kind of thing that comes from like, oh God, our
30:55
loved ones have to like go to therapy to deal with us. I'm like,
30:57
we're going to therapy to deal with you. Let me tell you.
31:02
I mean the therapist as I was fourteen because of you. People give me
31:07
a break, seriously. Yeah yeah, Oh my gosh, so funny.
31:15
Oh gosh, I love you so much. Such a great interview. I
31:18
love this. This is so great. So okay, so here we are
31:22
now and you're thriving and you've written this book. Let's talk about your book
31:27
a little bit. Okay, yes, let's do it. So you started
31:30
this, you start obviously, we've been on this pain journey and you've got
31:34
this chronically unstoppable. And I love that because what the alternative, like I
31:38
said, is not pretty. You know how can we move to some form
31:44
of freedom. We don't know whether we're ever going to be free of pain.
31:48
I have hope that will be in at least less pain. I don't
31:52
know if we'll ever be pain free. So talk to me about your book
31:55
just a little bit. Yeah, this is so exciting, I I know.
31:59
So I spent a solid three or so years writing this book, and
32:05
originally it kind of was birthed out of me writing a blog. And I
32:09
noticed that when I write the blog a very conversational way, people really connected
32:15
with it. So I'm not talking way higher above them, I'm talking very
32:19
much at their level. So I started writing this book and it is about
32:22
kind of my journey from even before I originally had the surgeries, all the
32:28
way up until the point when I'm you know, living alone and thriving.
32:31
And it has a lot of these mixtures of let me tell you about a
32:37
certain time in my life, and then here's all the things that I learned
32:39
from it as I'm even writing it, as I'm exploring through it, talking
32:45
about it through therapy, and something in one of the biggest things that I
32:50
that I kind of realized is that we spend so much time fighting this pain
32:54
all the time, we're fighting it, and when I fully felt I will
33:01
say, at this point, even though I have pain, I do feel
33:05
a level of free And I think that that's because I shifted my mindset from
33:10
that fighting the pain to actually working alongside the pain and kind of making it.
33:19
You know, if it's gonna again, if it's gonna be in the
33:21
car, if it's going to be in the back seat, Okay, it
33:22
can chill in the back seat. You know, it can do its thing,
33:25
and I'm gonna work alongside it and not fight for the wheel every single
33:30
day. And I think that's something that I realized at the end of my
33:36
my treatment that I that I did for about two months or so. It
33:39
kind of finally clicked of. Once you start, you know, pacing and
33:45
once you start figuring out kind of okay, here are the things that cause
33:49
pain. I'm going to do two of them today instead of all five,
33:52
I'm gonna do two and doing this kind of you know, negotiation. I
33:57
guess you could say, yes, that's great word. I was just gonna
34:00
say that. Yeah. You're like, literally, it's like the Angel and
34:02
Devil on your shoulder. You're like, all right, I want to go
34:06
have some fun over here. And she's like, exactly, Lindy, I've
34:09
always battled with that, you know, because I'm a geminist rist. Oh
34:13
yeah, interesting people. Yeah, but I I I think that Taurus.
34:22
Yeah yeah, Taurus, we know who we are. But but you know
34:25
that that level of negotiation and that level of working with what I noticed is
34:30
that my level of exhaustion went way down because it is so exhausting feeling like
34:36
you are fighting it every day. You know, you're not not fighting for
34:39
your life, right, We're all fighting for our lives, but it's fighting
34:43
against something that is so exhausting mentally, physically, the whole, the whole
34:47
shebang. So that's something. And you're fighting against yourself, which is what
34:52
the challenge. You're like, wait a second, this is me. Why
34:55
am I fighting against me? And you're like, and I know a lot
35:00
of that stems from trauma, and yours is a couple of weeks and we
35:04
didn't get into some of it, and that's okay, But when it comes
35:07
to trauma as a whole, trauma is trauma's trauma, right. Pain is
35:09
pain is pain. I always say that around here because I can experience something
35:14
and the same person can experience the same thing and have absolutely completely different results
35:17
from it. Different experience, different doctors, different that's different, that different
35:22
family environment, different jobs, different ages. I mean, I mean,
35:24
there's nobody is the same, and it's it's one of those things where I
35:29
feel like I'm always kind of like that again, that Gemini, that devil,
35:32
and that angel that's always been fighting with itself. And it's been like
35:36
that since I was a little girl. So there's some of that that's in
35:37
my persona. That's part of who I am, and it it keeps me
35:43
up at night trying to fight for my life and fight for the other life
35:47
that's in me. There's two people in here, and I'm not pregnant.
35:52
Just say God Almighty, just to clarify, because everybody all of a sudden
35:57
just drove their cars off the cliffing me. Everybody been like, oh,
36:04
no way, yeah, that's how I did it. Let me do the
36:07
gender reveal next, Jesus. Yeah, some big explosions on the news,
36:15
right, that would be my luck for sure. So and you know,
36:19
I think a lot of for me with pain management. One of the things
36:22
that's happened to me is I've had to start to grieve the things that I
36:29
know I will never be able to do again. There's absolutely no chance I'm
36:34
going to be able to ski again. Nope, not a chance. And
36:37
there are some things that I know I for sure will be able to do
36:40
again. Because that's what I'm going to focus on the stuff that I know
36:45
I'm going to be able. Don't try to do the things that I know
36:46
I like legitimately unless there's an act of God that happens. There's no way
36:51
I'm going to get ski boots on my on my feet, and there's no
36:53
way I'm going to be able to downhill ski and whatever like I used to.
36:57
But there are plenty of other things that I used to do that I
36:59
can do, new things that I'm getting interested in, Like I'm starting horseback
37:02
riding. Hello, not on my feet, I mean they're in stirps.
37:06
But I'm going to be strengthening my body in different ways that I haven't been
37:09
able to. And so looking at pain management as a strength instead of this
37:14
like negative thing is something that for me as a mindset that I have because
37:19
it's like, well, if I do this, i'm strength in my body.
37:22
I'm doing something that's healthy for my body and not going well. I
37:24
can't do that. It's what can I do? And then do the things
37:29
I can do, and I feel like whenever, like last night, like
37:31
my example, I woke up rejuvenated this morning because I stood for the longest
37:36
I've stood in four years. That is a win. That's a win.
37:39
Yeah, and I and you know, I got this condition at seventeen.
37:45
I missed senior prom. I missed senior everything I didn't I my biggest thing
37:51
was going away to college. I was so so excited about going away to
37:53
college. I couldn't go away to college. I commuted, but I couldn't
37:58
go away. You know, my old sister had to drive me and drop
38:01
me off, and you know all of that, and you miss certain periods
38:05
in your life that you're allowed to grieve and you're allowed to feel. And
38:10
something that was so healing for me was with my book when I was talking
38:16
about, you know, my mindset during that time period. I felt like
38:21
I was able to kind of allow younger Audrey past Audrey to kind of feel
38:27
those feelings and say, you know, what, what you're going through is
38:30
valid. And I think sometimes we just we our past selves. You know,
38:36
prior prior to developing any type of condition. That's all we want is
38:40
for somebody to say, hey, we see you, we see how hard
38:45
you're fighting. And so that's something that you know, when I when I
38:47
think about, Okay, here are the goals that passed Audrey wanted to do
38:52
in her life, But what does current Audrey want to do in her life?
38:57
Because it could be totally different, and it is to different. I'm
39:00
on a totally different path right where that's kind of the way life works.
39:05
But it's something that kind of allows you to both grieve and to also say,
39:09
oh my gosh, I am so excited for this, these future goals
39:14
that I have for myself instead of these past ones that I just didn't get
39:17
to make. Yeah, and that like for me, we are similar in
39:22
nature where I started in theater and musicals and dance and all of that stuff,
39:25
and I was supposed to be this famous you know, Gwen Stefani.
39:30
I mean, that was like my goal, That's what I wanted to do,
39:31
and then I ended up being like, I don't really want to be
39:34
a poor Thuspian, Like I just need to like work, and so I
39:37
started my business and I went down the business road and all of that,
39:39
and then there's that soul food that got lost somewhere in there, and I've
39:45
grieved that person. I'm grieving that that now this other person that I created
39:49
from that, And now I'm kind of like in I am forty six years
39:52
old and I am legitimately in the middle of a midlife crisis. I'm like,
39:57
I started this show and it is turned in to it has moved me
40:00
into a whole entire different path in my life that I never thought I would
40:05
would be. Where I never thought I would be the sick. I never
40:07
thought I would be having these kinds of conversations with people, certainly not to
40:12
thousands of people listening, right, Like what and now crafting a life for
40:16
myself Now that is meaningful for where I am now in my life and where
40:21
I want to be, not from where where I didn't end up. And
40:24
that's a hard pill to swallow. And it's sometime you know, when you
40:29
swallow a pill and it gets stuck and you're like, Okay, this is
40:30
it. I'm dying, this is it, Yes, the end, this
40:34
is how I die. By getting a vitamin stuck in my throat, right
40:38
that we've all been there. It's the scariest moment of your life and the
40:45
first giant ones to always those huge and if even after it goes down,
40:52
it's still there in your brain, you're like, I still can't. I'm
40:55
not gonna be able to eat chicken for a week for sure. But it's
41:01
a hard pill to swallow, you know. And when you finally get that,
41:07
oh that hard part out cut, very well done, Lindsay, good
41:09
job, good analogy. When you finally get that down, you're like,
41:14
oh my gosh, that that air comes in again and you feel safe and
41:16
you feel free, and it's not easy to get there. But just keep
41:21
drinking your water. Hydrate people, Just keep hydrating, you know, and
41:24
hydrate, hydrate and moisturize, repeat, because these are the things that we
41:30
have to do in order to keep going on in this life. And our
41:34
goal here is to make sure that people don't give up on hope and don't
41:37
give up on getting through that pill that's stuck in your throat, like,
41:42
get through the hard stuff, because we can. And you're never alone,
41:45
even if you feel like you are. You can always reach out to people
41:49
like myself and Audrey, you know, we're these are the people that are
41:52
out here. We've experienced all of this pain and all of this joy,
41:55
and all of them kind of combined together in some places, which is really
42:00
weird too. Oh yeah, oh yeah, there's always I feel like every
42:04
day has both the pain and joy multiple times with the amount of yin and
42:07
yang. It is an up and down and our support team and people around
42:13
us are kind of going through that roller coaster as well. And we applaud
42:16
you and thank you for being here for us, and we also are here
42:21
for you trying to support you as well. We might not always be as
42:24
good as good at it as we want to, but thank you to everybody
42:30
in my world. And you know who you guys are. But okay,
42:34
what are you up to next? What's coming next with you? Oh?
42:37
That is a great question. So I am currently working for an anti trafficking
42:43
organization that is human trafficking sometimes not turtles people. Yeah, I get that
42:50
can be not turtles, elephants, no, no, no, none of
42:54
that in rare bats yeah any good wanti yeah yeah no. So so I
43:04
work for an anti human trafficking organization and I kind of I fell in love
43:08
with that field and with the fact that you know trauma knows trauma, and
43:15
just like you said, it doesn't matter what your trauma is, it doesn't
43:17
matter how long your trauma is or the severity you can understand each other when
43:22
you've when you've experienced a type of trauma. And that's something that I've kind
43:28
of started to utilize within within my within my job. And then aside from
43:34
that, I am going to kind of continue doing podcasts and meeting up with
43:38
people and posting on social media and all that related to my book, which
43:43
I'm just I'm so excited about. It's it's craziness. But yeah, so
43:46
that's that's kind of what I'm gonna be up to. I love it so
43:50
much. I mean, you are an inspiration to me, especially because you
43:53
we're twenty years apart, like legitimately and and exactly, and I feel like
43:59
I have gained so much wisdom from you just in the few short months that
44:02
we've known each other, and even just on this episode, and I want
44:06
to applaud you for being so strong and so wise having gone through what you've
44:09
gone through. And we know what our future may or may not be with
44:15
CRPS, and that's something that I know Thelma and Louise and I have very
44:20
deep discussions about twenty four hours a day. Louise again, well, they're
44:24
here all day long. He's going to be there always. I'm my Thelma,
44:28
would you stop being such a bitch. She's been the one the past
44:31
two weeks that is like, I'm like, we're going to Low's and we're
44:35
getting a chainsaw because you're out of here, baby. I mean, it's
44:37
been nuts and so but you know, so interesting. Why they came where
44:40
I came up with that name is my acupuncturist told me that I needed to
44:45
humanize my pain. And I was like, okay. She's like, I
44:49
want you to name your feet. I'm like, what that is the dumbest
44:52
thing I have ever heard of. And it stuck and it is the best
44:58
thing that I ever heard, because I literally I do humanize them because I
45:01
felt like my legs were not part of my body anymore. I felt like
45:06
I was separated from like these don't even feel like they're part of my body
45:09
anymore. And she's like, you have to like talk to them like people
45:13
say talk to your plants. I'm like, all right, I guess we'll
45:15
talk to my legs. There's a crazy lady sitting on the bench talking to
45:19
her legs. That's my future. If you see somebody doing that, if
45:23
you see me in a park with pigeons on my head, please call the
45:27
authorities. Well, I don't know what's going on in the background, but
45:35
it sounds like a show behind you might be coming to a close and we
45:37
need to close out as well. So is there anything else that you would
45:42
like to leave our listeners with before we hit the Thelma and Louise Dusty trail
45:46
here? Yeah? No, I just I want to say I appreciate everybody
45:52
for listening. And you know, my biggest thing is that you know,
45:55
living alongside and working with your pain as possible, and it's something that you
46:00
can do. And if you're a loved one of somebody who's going through it,
46:04
no, we see you too and beyond appreciate you for everything that you've
46:08
done. Whether we can say it one day or whether you're getting yelled at
46:12
bias the next day, or who knows what it is, but we see
46:15
and appreciate you. And that's what's so important, is to remember that you
46:20
know, we see it, whether we show it or not, we see
46:22
it. Thank you for that. That was Actually my sweetie needed to hear
46:27
that from me, So I'll have them just listen to the episode and say
46:30
what she said. Yeah, just double that, yeah what Audrey said.
46:34
All right, ditto on that one. Thanks so much, girl. And
46:37
you know, I mean you and I are plugged in, so You're not
46:39
coming out of my life and I'm not leaving yours, that is for sure.
46:43
Thank you so much for being here, babe, and I will talk
46:45
with you soon. Thank you. You are exclusively invited to share this.
46:50
Living alongside you and your pain v IP pain journey together, Let's get to
46:55
the heart of how to heal with you by mine and Audrey's side. You
47:00
know someone who needs to hear this conversation today, Someone that you love,
47:04
someone that is in your support, someone that you are. You're dealing with
47:07
this, did you need to hear this? We are here, Welcome to
47:10
the Pain Game Podcast. That's what we're here for. Let's connect and hear
47:14
stories of your strength and grit. I am here to help provide a safe
47:17
place for you to be vulnerable and honest and share your powerfully amazing stories.
47:22
So please follow the Pain Game Podcast wherever you digest your podcast content, we
47:28
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all the socials. Thanks for listening my little VIPs. Catch you on the
47:36
other side.