Finding Strength in Struggle: A journey of CRPS & embracing purpose with Lyndsay Soprano

0:00:00 - Speaker 1
Oh my gosh, lindsay, i'm so excited to have you here on the show. I've been following you. We've got a chance to connect and, like I'm so excited to go into a deeper conversation and we already were going into a deep conversation We're like we need to record. Why are we recording? But first, before we dive into that, why don't you just give like whatever that, however, however deep of a backstory you want to give? 

0:00:20 - Speaker 2
Well, we can't give that because we do not have 72 hours to get into deep story. But my name is Lindsay Lindsay Soprano. I am. I am a fellow podcaster as well as Dr Andrea Mola, but I also live in chronic pain. I have a really rare pain disease called CRPS. It's called chronic regional pain syndrome and it sounds fake. I can tell you that it is not. And on the McGill's pain scale, if you're familiar with it, especially if you are in chronic pain, you definitely are familiar with all the smile charts that we're given. But on the McGill's pain scale it is higher than natural childbirth And for somebody like me, i'd live in natural childbirth all day long And that's intense. 

But people look at me and interact with me and see me and hear me and they don't understand how it's possible that anybody that is living in the amount of pain that I am can still show up, look pretty, put mascara on and bring it. 

Every day I do, and the reason I can do it is because of mindset And I know it is like cliche, gross, whatever about your mindset And I was like, ooh, it's so, woo, woo, it's not. 

It is a matter of shifting a very small thing each day or each hour or whatever works for your life. For me, i almost committed suicide and I was saved in that moment. And when that happened I shifted from my boohoo pain, whining about it, living my life in a really shitty addicted spot and going nope, oh hell, no, that is not how I'm living my life And that's certainly not how I want my name to be remembered, and so I shifted my mindset in on a dime, and it doesn't necessarily need to be that dark and twisty for other people to make those shifts. But when you do make that shift, that show up and look pretty and be on camera and do what we want to do and be who we need to be is for us, and then second after that is everybody else that follows. So I wake up and I do it for me, and then you know we go from there. 

0:02:42 - Speaker 1
That is so frigging powerful. 

I want to like ask a million questions and I'm going to tie into like where the conversation was before this, because just since you wake up and look pretty for me piece, where what we were talking about was someone had told me when they looked at my website, a marketing expert had told me that I looked too pretty to be on a chronic pain website, and that's anyways where that conversation went. 

It's just this, and Lindsay was talking about this whole concept of like you don't look sick, and how hard this can be. I really feel like for those in chronic pain, there is this really fucked up dynamic that happens that when you make that mindset shift, or when you shift in any way, even if it's the small, it doesn't have to be as dramatic as Lindsay was talking about hers, because I know mine was not that dramatic. I think that's like so cool that you can have that right And it's like mine was much slower over time, but it's like when you make this shift and you show up, we often get met with oh well, you must not be that bad, like things must be fine, and I think it creates this hesitancy in people to show up. So I'm curious what your thoughts are on that. Yeah, no. 

0:03:48 - Speaker 2
And I agree with the hesitancy thing because you know it's so interesting, because I had to shift between I'm in a wheelchair right now, right now I use right now very specifically in terms because I'm not staying in this thing, but I'm in it for about 50% of my life. The past couple of weeks have been really heavy in the pain department. But, you know, just show up and do it. But the hesitancy part for me really came in. I was hiker, biker, skier, super overachiever, you know, business owner, blah blah blah. I was always going, going, going For a singer, i'm like singing up, non-profit organizing, i'm doing all of these things. And so for me I was hesitant to show up because I was not that person that I used to be, was no longer here And I kind of had to like give this new person a birth and feel confident in that, even though I can't walk and run and play and ski and do the things that I used to, i've adapted last adaptive sports and adaptive worlds that we live in. 

I was hesitant to show myself in my wheelchair. I was hesitant to show myself that I lost so much weight that I've atrophied. I was hesitant in all of those things because I was hiding from a person I used to be, who the person that I am now, and so I was really, and I'm a Gemini on top of it. So I'm like, oh God, well, these are from personalities going on. This is a blast. But I was hesitant to show myself in my hurt and quote, unquote sick state right, as a chronic pain person. But I don't want to be a patient. I don't want to be a chronic pain patient, i want to be a chronic pain advocate. I want to be somebody that steps in or rolls in or crawls in, i don't care, i am going to show up, even though every minute of it is pretty scary. That hesitancy I've turned into more of a drive for me. And then I don't even know if that makes sense to you. It makes sense in my noodle. 

0:05:51 - Speaker 1
Oh my gosh. No, i mean, it's so incredibly powerful And I'm sure so many people listening are like how did you do that? Right? Like, i think for so many and I know so many listening to my podcast are really active or they identify as someone who was really active and that was a piece that was taken from them. I think there's so much fear around an embrace, embracing life that doesn't have that level of activity in it or looks different, because then it's like but then I'm going to be stuck that way, but then what's my life going to look like around it. And it's like I'm hearing you embracing it, even with the loss of things. Oh, yeah. 

0:06:28 - Speaker 2
And I love that you use the word stuck and I use that actually in the past couple of weeks, as I was really really stuck. I was bedbound for two weeks and it was just like, okay, this is not part of my plan right now, but I had to listen to my body And so when our bodies start to whisper to us, we tend to not pay as much attention to it. And then they kind of like start getting a little louder and a little louder, and now it's screaming, right. So what do you do when it's screaming and you can't sleep and you're so sad and you're depressed and you're crying And you want to eat a bunch or drink a bunch or do drugs a bunch or whatever? Trust me, i've been through all of those things and all of those simultaneously, those thoughts coming through. What do we do in those spots? Well, sometimes you know, in my opinion, listen to your body and when your body is telling you to rest, just give it that bit, even if it's for five minutes And I know it sounds like a short span, but it isn't, because it just gives you a quick check back to like what's important for just a minute. That's it Like five minutes. If you can't give yourself five minutes, then stop listening immediately and go seek help other places, because we have bigger issues on hand. Because if we can't sit with ourselves comfortably for five minutes and just breathe a little bit, read a little bit, what have it, then you're not going to make it to 10 minutes and you're not going to make it that far. 

For me, i do a bunch of things. You had asked what are some of the things that I do. It's kind of a little bit of a lot, and that supports what I'm saying about the five minute thing, because and this isn't like a thing that I do like oh, you only do things in five minutes. So I'm just saying like, for me, i do a little bit of a lot. So I do a little bit of meditation. 

Every morning I do it in my infrared sauna while I have just massaged coconut oil on my bod And I've got all my little trinkets and some like affirmations that I put into my sauna that I have there And I journal and I read, and then after that I start my day. Now, not everybody has the luxury to be able to start their day that way. Right, some need to end it that way. Some can't fit it into the middle of their day. So my thing is trying to figure out what works for your bod and your life at five minute increments that can make a little bit. A lot out of a little bit. 

0:08:52 - Speaker 1
That is so powerful, that is so serious, because I think sometimes we think it's got to be this giant thing Yeah like, oh God, i've got to do this, now I've got to do this. 

0:09:00 - Speaker 2
I got to change that, now I've got to. I mean, the list goes on and on, especially with chronic pain. We're talking about, like we've got nutritionists and our room is where arthritis people and are this pain doctor and are that pain doctor and all these doctors appointments. For me, what I ended up needing to do is I needed to focus on what was most important in my world, and for me, it was my mindset and changing it to be like okay, this is this might be forever. It might be I might feel like dog shit forever. However, i can still do shit when I feel like dog shit. 

Yes, the reason that we we ended up putting me, not putting me. I don't want to use those terms, but I ended up with my sweetie. We chose to get me fit for an adaptive wheelchair that can be sportsy, right, so I could like use it as exercise as well as getting around and doing things, because there was no way I was not going to go to Italy. There was no way I was not going to France. There was no way I was not going to do these things because I was in so much pain. 

So we worked on a game plan and it took us about two years to get us to a place, to get me to be able to travel and to get rid of that sadness and that, that feeling that people were going to judge me because I was in a wheelchair and what. 

Like you know, all of that, all of the narratives that we put in our brain about people feeling like they see how we feel, and that is a challenge for people in chronic pain, and I can say that for myself that I feel like I know how bad I feel And I know how bad I hurt and I still bring it, and I can't imagine people going, wow, like she's in a wheelchair. Like you know, like there was all of that stuff that came up with it and we just decided, well, we're going to give it a try. And so we did. We threw me in a wheelchair and we brought me to Italy and I did the Coliseum in the middle of June. It was like 110 degrees and the humidity was like 180. It was so hot and so crowded and I'd never been in a wheelchair before And I did this thing for the entire Coliseum and all of Rome and I did all of Italy for three weeks And it was amazing, did it hurt? 

Yeah, was it hard, absolutely. Did I fall out of my wheelchair in public settings? Yes, ass up. Oh gosh Ass up in Rome. Thank you to the Italian men that helped get me back up off of the ground. It was lovely. 

0:11:41 - Speaker 1
You know, i mean I'm not going to lie. I mean, it's a nice man in Rome. 

0:11:46 - Speaker 2
I'm leaving in a couple of weeks for it. I might just now, I know, Now I know how to toss me out of the chair, but safely. But I'm just saying you have opportunities if you make them happen for yourself, and it is that choice. It is that choice You don't if you don't open that up. And I, I, I was so closed up. I was just tight as a little clam, And I don't care for that. What statement I just said. So please strike that for the record. But anyways, I was tight as a clam. She says it again. I did not want to do it And my sweetie was like okay, then guess what? We don't ever go anywhere and we don't ever do anything. And you're going to end up feeling sorry for yourself and you're going to end up presenting me. And we were like well, all right, let's embrace what we've got. 

0:12:39 - Speaker 1
Yeah, it's so powerful. I just love that you were able to embrace what you have And I also love what you said about how it took two years to kind of be okay, to work up to being able to show up in public in a wheelchair, because it is amazing how our own thoughts about how others are going to judge us for caring for ourselves, and I think we'll get in the way of doing something I it brings up. I worked with this one patient man once who in physical therapy, who had a neurological disorder and he was slowly losing his independence And one of the big things was being able to feed himself. And I showed him one of those skin and because he had really really bad tremors, and I showed him one of the spoons that can like correct your like if you're tremoring, it like has the balance in it so you don't spill stuff out of it. 

It was so cool. It was so cool. I was like so excited when I found it and he that's so angry about it was like such an interesting response because he felt like using that was giving up and I was like, do you not realize that your option is your wife feeding you, like, which one feels inspiring and luckily I, at this point, i had known him for a long time, so I was able to be like dude, like which one gives you your independence, you being able to able to eat for yourself with an adaptive spoon or refusing to see the adaptation you need and having to be fed by someone else. 

0:14:04 - Speaker 2
I can't even believe that because that's like a spoon. Yeah, that is his own home. Oh my God, i would A. I want one of those spoons because that sounds amazing. But that does show where our insecurities lie. 

And what I've found, too, is that, in the process of saying yes to using my chair where I need to use it, bringing it into our home and saying this is what we're doing, and everybody in my life now knows how to like grab it, pull it, break it down, throw it in the back of the truck, like everybody needed to learn, and it's been a whole thing. It was a decision that we kind of came together on because you can't do it alone, cause, just like you're saying with the spoon, if you don't do this, then you can't do this alone. So for me, i am like today, for example, the day that we're recording this episode, i have been totally wheelchair bound all day. Today I'm okay, i'm good Cause guess what? I have a tool to get me the frick around and do what I need to get done. It's not easy. It's harder to reach things. 

0:15:18 - Speaker 1
I've got a little grabber. 

0:15:20 - Speaker 2
You know it's not good with wine. By the way, grabbers do not work with red wine in a glass, so don't try it. Good tip, i've done it, and then I'm here for you If you need any support in this particular stressful situation. 

0:15:37 - Speaker 1
You cracked me up. That's amazing. Try it, Not not recommending it. 

0:15:41 - Speaker 2
Just don't do it. Don't do it, but this is the point. We need people, we need each other, we need support, we need love And if you have toxic people that are not supported, get rid of them. Yank them, because if they're not going to be there for you when you want to do the call of Sam and your wheelchair, or they're not going to be there for you When you need a little bit of a spoon, you know whether it's behind you in bed or if it's at your cereal bowl. You know the faith and the hope that I have. And this is not every single day, by the way. This is not every single day. I have my days. So, please, i mean, i am who I am and I love that. I've got the spunk and the junk behind me to do it, but I have my absolute crap ass days and I don't want to have anything to do with life. I don't want to have anything to do with anything. I don't want to show up. I have those days We all do. 

So give yourself some grace and give yourself some patience and love yourself enough to listen to your body and also get rid of the shame game, like it is not shameful to have what's happened to you happen to you. Whatever it is, it's not what you did. It's what happened to you. Now, what you did may have contributed to what's happened to you, but don't put it's in the past. It's gone. You can't do anything about it. You cannot do anything about the past. 

So if you're going to be using shamy stuff that's going to make you respond to certain painful things in your life, like there are things that you need to work on within yourself, and those are we're all a work in progress is what it comes down to, and pain is part of that. If you live in it and if you don't live in it, and you are somebody that lives with somebody that's in it, keep up the good work. Okay, like, keep up the good work, but also understand that you might also need to learn a couple of things you know, and listen to some podcasts with some pretty badass bitches. 

Yes, there are some skills that you can learn, because the chronic pain community is a community. 

0:17:49 - Speaker 1
Yes, It's not. Do you speak to that on your podcast like support for, okay, and Lindsay, i mean it will save at the end too which her podcast is pain game podcast, while you were, while we're putting this in your ears. So, definitely go listen, because, yeah, i think that's about you know, that's something that I have not spoken to about. It all is like caregivers of those with their partners. 

0:18:09 - Speaker 2
Oh, absolutely. 

0:18:09 - Speaker 1
People with chronic pain. So that's yeah. 

0:18:12 - Speaker 2
Yeah, and so it is important and, like my sweetie, i'm just going to speak for him and he would agree that it's so interesting. The other night we were we don't fight We had a conversation about what his chronic pain is and he said my chronic pain is yours And I was like like that was really heavy for me because I and I told him, of course, outcome of this is not not going to happen with me, anyway, and I laughed through my tears, but it was such an interesting statement because it is chronic. Our chronic illness is that we have our chronic. For the people that love us as well, you know it is and they have needs to help support us. 

If we don't ask them and we don't talk about them And all we do is frame our life and they have to fit into our frame of existence, that is completely unfair because it is not up to them to work their world around, every little tidbit that may or may not hurt us, or we can't eat that and we can't do this, you know, like the gamut of lists of all of us, because we've all gone like gluten-free, dairy-free, alcohol-free, this-free, did-it-it, and so everywhere we go and every person we interact with and our families and our friends were like guess what? So you're not allowed to have any of these things on your menu because of me. You know it's like that kind of stuff. You have to pay attention to the people that are around you that support you as well, and put some boundaries up with them, but then ask them what they need in order to help support you, because they also have feelings about your pain. 

0:20:03 - Speaker 1
Yes, yes, oh my gosh, thank you for speaking to that. It was so powerful because it's like when you're in pain, it's so hard, like right, it's like blinders and like just looking at your own life, at your own self. Yep, and of course, right, that's what happens and it's like when you have someone like your life that you love. Hey, they have their own feelings too, they have their own needs and oh, it's so. Yeah, i think it's so important that people like partners get support that they need and whatever, and it's up to them to ask for that too. Right, it's like, it's like conversations. I think I always tell, anytime I'm talking about relationships with people, i'm like, i'm not a relationship coach, but here's my opinion. 

0:20:41 - Speaker 2
I'm an opinion coach. 

0:20:43 - Speaker 1
Yes, Normally, when we're talking about other stuff, we get very like I talk about a little differently, but relationships. I'm going to give you a lot of opinion stuff here, but it is like I do think there's this really weird dynamic that happens of where we forget we can talk to our partners and be really open and just honest. And like a lot of the things that people are coming to me like, well, i don't know what they're going to think about this. I'm like, have you just like said that all of that to them? Like and yeah, and you know. And then it's like, oh my gosh, but they're probably going to. Yeah, they are going to react, but then you have to work it out. That's how connection happens and how you go deeper. Like if you have an overall loving partner who cares for you, like yeah, it might bring up a ton of shit, yeah and it's not even just about our partners either. 

0:21:23 - Speaker 2
It's about clients. Like I've had to have conversations with my. Some of my clients have been with me for 15 years or what have you. Some you know 10, 15 years. They've known me forever and they've had, like Lindsay, like you're not necessarily considering how we feel about what's happened to you And I was like I didn't even think about that. You guys would be upset. But they've been through me. They knew me before all of this and my diagnosis and now they're part of my life and they know that I have struggles and there are days where, like I said earlier, like you have to cancel a couple of things, you have to reschedule some things, and everybody's pretty cool about it. If you don't talk to the people that you interact with about how they want to help support you, the best way for them will help you. Otherwise you're dumping and that's like text message dumping, because you're having one of those nights and everybody knows it. Whether you're in chronic pain or not, we know what text dumping is And so we're just dumping on everybody and we'll just throw it out there and hide behind text messaging or hide behind social media posts or what have you. 

But when it came to like for I'll give you an example with my mom I've always done this thing over the past couple of years where my legs hurt so bad that I just I would rather be an amputee, I've like gnarly nightmares about that. 

That's for a different story and day, but anyway. So my whole thing was like I'm on my way to Lowe's because I was going to go buy a chainsaw to cut off my legs. So it turned into this like for me it turned it into a joke, even though it was kind of passive, aggressive, i don't. I don't even know where it came from, but like people had asked me like how are you doing? And I would just say I'm on my way to Lowe's, and then everybody knew that I was on. All I wanted to do was chop off my legs. Like that's the kind of pain I was in. So my mom straight up said to me for Christmas the only Christmas present I want is for you not tell me that you want to chop my daughter's legs off. When it comes to asking people about what works for them to help them support you better, i feel like that's a good example. 

Because my mom's, like I need this for me, like you cannot say that to me anymore, and so then I stopped doing it like as a whole, i stopped saying I wanted to chop off my legs as a whole. So, anyway, i still want to chop my legs off. 

0:23:54 - Speaker 1
Yeah, i know I think this is such a beautiful example, right, because it's like relationships are messy And like we have our boundaries and it's like I feel like sometimes we feel so. this is like a whole different conversation that I feel like about. But it's like you're like with the awareness of emotional emotions, which is great. It's come with this almost like entitlement to feel and say which, whatever which exactly. 

I mean you are, but people that are entitled to have their responses, to write it right, right. And then it's like, and this is then again things can get messy, things can get ugly, and then we can have a conversation and the repair where we come together and figure out okay, how can we, if we are two people that care about each other and love each other and want to continue this relationship, how can it work, moving forward for both of us? 

0:24:37 - Speaker 2
Yeah. 

0:24:38 - Speaker 1
I also just want to say I love talking to you. 

I mean, i love talking to you just period but I love seeing like I just think it's really cool to see, like right, you, you know, start, you're such a bubbly, spunky person And it's super fun, but it's like right, and then I could just like see this like authentic emotion flow And it's just like to see you hit all the ranges and just allow yourself to show up exactly as you're feeling. What you're feeling, as you're touched by something, is just really powerful. It's really really powerful that connects that you have with your body and how much you listen to her and allow her to be her. 

0:25:17 - Speaker 2
Yeah, and some days I don't like her at all, like I'm like so pissed, i'm like, come on, bitch, like you are really pissing me off, you know, and that's okay. So you know, and there are days where it's just like I want to give up. I want to give up. And CRPS anecdotally whatever dickhead named it, this or coined it CRPS is called the suicide disease. So in the back of because so many people cannot handle the massive amount of pain that they just give up, so in the back of your little noodle every day when you wake up, is suicide disease, suicide disease. There's always a way out. There's always a way out. And I know in the chronic pain community, no matter what, whether it's called the suicide disease or not, whenever you're in that massive amount of pain, you know that you could. And that is a scary thing. 

And that was when that, that suicidal stuff that happened with me years ago not even that long ago, five years ago, five years ago, four and a half years ago, somewhere in that So it's not that long ago where I was just like this is it like I am done? And I called it writing letters. So I had written letters to everybody that I knew, telling them how much I love them, and also things that, like I was pissed off about them at. Like I did like a full Monty, you're welcome, not welcome I don't even know if that's a hashtag, but we're going to make it one. But so I had done this thing, writing letters, and I had put together like a full game plan about how I was going to do it, how, like, the whole entire thing. 

That's fucking scary, it's really fucking scary. I know it's there. That's scarier. And so for me, on my really really bad, low pain days and my pain nights, which are very, very lonely, even when you're partnering your spouse or your friend or whoever is next to you, pain is lonely. Just, it is what it is. Even in those dark times, in those moments, now I have to pull myself back and I read one letter that I've written and I'm like whoops nevermind, that is some scary shit. 

So you know I've had to put in some pretty decent, but it's not the case now. But this is what I have. These were tools I was doing to use to try to make sure that I was keeping afloat. And now I'm floating and I'm fabulous and free. But that doesn't mean that I don't hurt every single second of my life. Every second. I don't have one second of freedom from pain, not one. But you know what Fuck it. This is life. You know, live it. Live it the way that we're presenting it and then it presents it differently down the road. You never know. Our option is what we're given. There aren't any other options outside of working hard for what we're given and then take it to the next level and then from there see the doors that are opening, even if they're but a crack, and there's a little bit of light shining through. 

Just be inquisitive, be interested. Be interested in trying to get yourself out of a wheelchair, get interested in helping somebody else too. For me that's been really important is finding somebody else. It's almost like AA, like being a pain sponsor for somebody else that may be a newbie to the community. You know that's been helpful for me, but I mean I've got all kinds. Obviously, i can stay here and talk to you guys for a million years. 

0:28:45 - Speaker 1
Yeah, i love it because really, like how you're speaking to like there is a difference. I feel like so often what people present is the like where they are now right, which is like kind of past this point, that they've done all this, and I was like you can speak to, how okay, now the freedom I have and now I can do this and now I can, you know, and make it sound really pretty with a bow on it, but I feel like not everyone's willing to speak to what it took to get past a certain threshold And so just what? and then it takes a fuck ton of work and darkness and pain, and so thank you for speaking to that, because it's like we can't skip those steps. 

0:29:19 - Speaker 2
No, those are the most important steps is to get through the dark and the twisty and to get rid of toxicity and face some of our demons. And guess what? I've got more demons than I can possibly face in a week. But you know, i look at one of them and I'm like, all right, buddy, you've been here for some time. I'm really really sick of you. I can only fit so many demons in a clutch bag, not today. Get rid of the duffel bag and move to a clutch. Okay, we are only. We can only carry so much. We can only carry so much. And there's a book called the body keeps the score And it is an incredible book If you have not read it, and it is about trauma and a lot of people that live in chronic pain. And I know Dr Andrea Moore she talks about. It's what I just like to call you. You're right, that's your name. I mean, let's be real. Can we call me Dr Lindsay Soprano, just for? 

the rest of this. Okay, i am Dr Lindsay. 

0:30:26 - Speaker 1
Soprano, you were saying Now I don't remember Body keeps the score trauma. 

0:30:33 - Speaker 2
Yeah, yeah. 

So I got into starting my show, the pain game podcast because I couldn't find a show that spoke to me the way I needed to be spoken to, about getting my shit together in regards to the difference between feeling sorry for yourself, getting diagnosed, the pain, the divorce, whatever it took, like, whatever the stuff that I was going through. 

I needed a space that I knew I needed to hear, and so I was like, well, i'm just going to create it, and part of it is being incredibly vulnerable, like I've been with you guys today. But a lot of it stemmed from trauma And I didn't know enough about trauma when I started my show And so when I began to think about it and this was like five years ago I was diagnosed about six and a half years ago now, but about five years in, i was so pissed off at the world, i was so angry, i was just, my life was so fucked up from my diagnosis, and those days of pain are like a paper cut in comparison to what I feel now. So I'm like, wow, what a wuss. 

0:31:44 - Speaker 1
Wow. 

0:31:45 - Speaker 2
Lindsay Wow, no, i was. So. I was feeling so sorry for myself about that And I wanted to start a show about pain, and all I was going to do was bitch and complain, and then, and then, and then all of these things happened in my world, and then the suicide stuff that we talked about earlier shifted mindset And then I changed it to Oh no, no, no, no, no. we're going to talk about pain and we're going to do pain with purpose. We're going to give my pain purpose. 

And so as soon as I shifted. that not every day is roses, that's for sure, but at least I know I wake up every day with purpose about my pain, instead of just pain. 

0:32:24 - Speaker 1
Does that make sense? It makes so much sense And I think you're speaking to something that's so important that I want to like just hear you speak on. Even more is that I think for so many it becomes a fixation about getting rid of pain. Once my pain is gone, then I can live my life Right. So it's just like wait a minute. But, lindsay, you're talking about doing all these things for yourself, but your pain's not gone, like what's right, and it's like we never know. 

0:32:48 - Speaker 2
No. 

0:32:48 - Speaker 1
So why not live your life now? 

0:32:51 - Speaker 2
Yeah, i don't know. I don't know what's going to happen. They may find a cure for CRPS Doubtful, nobody even understands how to treat it and how it happens, much less find a cure for it. What we can do is find ways to manage And I don't like the word pain management because I don't want to manage the pain. I want to live and live with the pain, because that's just what it is. You know, there's somebody that was on my show many, many episodes ago and she said instead of calling pain pain, call it a sensation. 

And I was like that's very yoga of you, That's it was a yoga girl. 

And I love yoga Don't get me wrong, cause I've used to do all of it all the time but it was just, it was an interesting way. And so the other day I was having this weird, random new addition to my crazy, like list of sensations that I have in my body And I said, wow, what an interesting sensation. And I caught myself saying that I was like, oh, and what it did was? it actually caused my brain to look at it as an interesting sensation And it almost intrigued me. Instead of making me feel sad or upset or bothered or pissed off or whatever, that sensation would normally like get me all riled up about. And so I think a lot of the way that we talk about pain and the way that we infer to it, the way that we speak on it, the words we use are so powerful. If I say I hate my body, and I say that every morning, guess what? I'm going to hate my body, yeah. 

0:34:32 - Speaker 1
And I think not only that. I would kind of like well, you want to add to that? I'm like not only does that just then reinforce that, but I think it also when we look at the way the brain and the nervous system operate. It almost teaches your brain that the body is something to be feared, like, oh, something's wrong with it, which literally just increases the sensitization in our nervous system, which amplifies pain, like your brain's like Oh my God, i'm living in this fucking thing that I don't even like, like that's a problem, like, yeah, like threat mode of like Yikes Constant, all the time Yeah. 

0:35:06 - Speaker 2
And I don't love what's happening, with the sensations that my body is experiencing. right, very different than saying I hate my fucking body because I'm in so much pain. Guess what I just said. the same thing, totally Just different. 

0:35:22 - Speaker 1
Your brain interprets it so differently, though, And even I mean, I'll say, I tell people the same thing about even just saying I hate my pain. 

0:35:29 - Speaker 2
Yeah. 

0:35:30 - Speaker 1
Because, again, it's the way our just our system works and our brain can interpret things. It's like Oh, you hate your pain. Oh, pain is bad. And anytime your brain thinks there's something that's a threat, it just increases it. It like is like let's pay more attention to this thing, because this thing is scary. So if it's something scary, your brain's like I've got to go. no, even more about it. Yeah, it literally puts more little nerve endings on. You literally will feel more pain. 

0:35:56 - Speaker 2
I mean the brain pain connection is so incredibly powerful. In that book The body keeps the score, really talks about trauma and things that happen to you in your life and how your body interprets it, how it sits in your body and it sits in your nervous system and, depending upon what type of trauma you had and how you dealt with it, it's going to sit in your body in different places in different ways and it's going to interpret itself in behavioral situations, especially when it's childhood trauma, like I experienced. But I also experienced it into my adulthood And you know, with that, when you don't address the stuff that happened, but when you're a child especially in my circumstances we were young like how you don't talk about it, especially in the late seventies and eighties, we don't talk about anything. 

0:36:47 - Speaker 1
No, definitely not. 

0:36:50 - Speaker 2
And so under the rug swept went rape and molestation and abuse and so on and so forth, and under the rug all of that went. It sat there, and I don't know if you've ever picked up a rug. That's been there for a while, but it's pretty fucking gross. 

0:37:07 - Speaker 1
Yeah. 

0:37:08 - Speaker 2
Yeah, and so now here we are dealing with all the things that happened, all the stuff that we brushed under there. That's pretty gross and moldy and dirty and it's got all kinds of other problems that actually weren't there when it first got under there. So now that's what we're doing, and, unfortunately, a lot of us it has. Especially if you're an empath like myself, those experiences do settle in your body and unfortunate ways, it turns into chronic pain. And so here we are, but there is hope at least. I mean there's. There would be no reason for me to be sitting here talking to you if I didn't think that there was, because I'd already be like hanging out with Whitney Houston. Sorry, i have no idea why that popped in the head outside. The only thing I can think of is Netflix last night. 

0:37:58 - Speaker 1
I saw it. I didn't watch it, but I saw it pop up too. 

0:38:03 - Speaker 2
That's gotta be it, because I have no idea where that is. Great, this is our point about the brain. A message was implanted and that just came out. So I'm every woman. 

0:38:25 - Speaker 1
I love your rug analogy. I want to bring this back before I lose it, because I swear I won't get so. Let's bring it back to them. I will always love. 

0:38:39 - Speaker 2
Kevin, okay, come on, stop. 

0:38:44 - Speaker 1
Get focused. 

0:38:45 - Speaker 2
Dr Andrea Moore, You're talking with Dr Let's talk about serious things here. 

0:38:49 - Speaker 1
Okay, i love the work analogy because as you were talking, i was like, oh man, what a perfect brick and analogy of like you could have this beautiful, gorgeous tapestry, you know, with gold woven in and the special thing, and that always, always true of it, and then over the years all kinds of gunk can form on it And you know what, sometimes we can keep it really pretty on top. But you're right, i'm like the underneath, right, what is settled under there and below, and it's like are you willing to lift it up and look? 

No because, yeah, it's not pretty what we see And it can be really easy to just be like, nope, just don't want to look, but It's, it weighs down on us. It is like we cannot. A rug can carry, ok, the rug analogy stops being perfect past this point because then I don't know how to you know, probably doesn't affect the rug, well, if it's dirty underneath. But you know what I mean. 

0:39:41 - Speaker 2
It is a whole new world. 

0:39:42 - Speaker 1
Oh yeah, if you can. it can definitely not be a flying carpet then, because it would be too heavy, because it was filled with all this junk. 

0:39:52 - Speaker 2
Aladdin's like what the fuck? I can't even get this thing up, like up off the ground Guys, like what's happening here. 

0:39:59 - Speaker 1
This is so dirty, ok, but, yeah, right, like it's just like, are you willing to do that? And it's like, it's so easy to be like, but I can make it look pretty up top. You know, i can just do all these things to make things like things look, appear pretty from the outside. They affect our body, they weigh us down and your body starts screaming eventually And it's just like are you willing to look at the dirty stuff? But we could leave it there. But then the other thing I really want to say because I keep wanting to come back to this and keep coming back is using your Rome trip as an example. 

Often it's this decision to either like I can live my life in pain and go experience life, because the other option is being in your home or just lying in bed or whatever like your go to is and you're still also in pain. And I know I had such a similar like not nearly as I feel like my chronic pain levels were like so mild compared, but I had this also this point whereas after my post concussive syndrome, where it was like either I can, you know, stay stuck in this victim, like hating, where I am like stuck in this, like really not helpful, like constant need to fix myself right Or just be like what if I was like this for the rest of my life? And it was that question that like liberated me, cause I was like, well, if I was like this for the rest of my life, i would sleep more, i would feed myself a lot better, i would quit my fucking job that I don't like Like I would do. And I was like, well, why don't I just do those things? Right, like, so, like, why not? So that's like what my and and my, my symptoms did get a lot better when I was able to do those things. 

But it's right. It was like this, like when I could meet myself, when I could be like this could be what it's like for the rest of my life, and fully accepted that And lived as such it. It opened. I mean I walked around and I got to experience a lot of like I was dating my now husband and like I got married in the process and like reconcussed myself in the process and whatever. But you know what I mean. It was like I was able to live my life and moved across the country, got a new job like, did all sorts of fun stuff lived the symptoms and then slowly, over the time they did happen to disappear. 

0:42:01 - Speaker 2
Well, and one of the things and I know that we're getting close on time, but when it comes to like traveling, for example, it was a big thing for me And I remember last summer this is in 2022, was the first time that my wife, sweetie, and I were able to travel abroad, and it was the choice that we were. 

we weren't going to be able to do it without with me in a wheelchair because there's no way I was going to be able to go through Rome and all these museums and all of these places and all of these. I mean I was using my wheelchair over Cobblesson. I'd never been in a wheelchair before. I didn't know what the fuck I was doing. Like this was like insane. Like my sister and I like practice at the mall, like okay, we did go to the improv as well and we drank a little too much and ass up in my chair fell down in front of everybody and it was like all right, i got it, go, like we're good, nothing to see here made the best out of it. 

But one of the things that with the traveling part that I find to be so incredibly amazing was in the midst of all of the traveling. Yes, it's a little bit more stressful, especially when you're in a wheelchair, especially when you're in pain and you might feel judged and you might feel very, very alone in all of it. Holy crap. I can tell you how much I thought about pain. Very little, because I was busy looking at the amazing world that we live in And I was busy out looking at. I was in Rome for the first time and I'm like, oh, my fucking God, i'm here Like I made it. This was a lifelong thing for me to be able to do that, and that's another story for another episode, another day, about why I didn't make it to Italy the first time. But this I was distracted by amazing life experiences that were happening around me, and so my pain dropped to the absolute bottom of the list, when it normally is on the top. 

And so when I've started to work towards shifting pain into like the middle of my list, it seems to work a little bit better for me. It doesn't mean it's dropped to the bottom of my participation in it, but we do participate in our own pain, And so if we choose to kind of participate a little less in it and participate in more of the things that are a little bit more fun, it all of a sudden you're like whoa, it's not easy and it's not going to work the first time It might. But throwing those kinds of ideas into, even when you're doing a weekend, get away, go away for two days, just do it and just enjoy it. And try for 50% of it to just enjoy, You're going to be in pain. 

0:44:39 - Speaker 1
You're going to be in pain. 

0:44:40 - Speaker 2
Okay, big fucking deal, we're in pain. We're in pain. Okay, you can't do anything different today than you could yesterday, or maybe not tomorrow, but you can make the change to go. All right, i'm going to rock this right now. I'm going to rock this right now and be here now. I love that statement. 

0:44:58 - Speaker 1
Be here now, be here now, not be there now. 

0:45:00 - Speaker 2
Be here now And, yeah, it might suck, you might fall out of your wheelchair. And you might fall out of your wheelchair Her eyebrow that she was on. 

0:45:33 - Speaker 1
They can find you, so they can hear more of your goodness. 

0:45:36 - Speaker 2
My goodness. Well, you can find my goodness on Instagram, at the pain game podcastcom. You can also at the pain game. Podcastcom is the website. Instagram is at the pain game podcast. Those are the best two places to find me. If you live in chronic pain and are struggling and you want somebody to talk to, hey, you know, the two of us are here for you. So Yes. 

Transcribed by https://podium.page