Tangled in the Curves featuring Caroline Bell

In this episode, Caroline and I dive deep into the heart of her story, exploring the powerful why behind her book, her personal scoliosis journey, and what fuels her ongoing passion for scoliosis awareness and advocacy.

Caroline opens up about the challenges and triumphs she faced along the way,  from the moment of her diagnosis to life after spinal fusion surgery. We explore how her experiences shaped not only her perspective on self-love and resilience but also inspired her to turn her journey into a source of hope and empowerment for others.

We also discuss:

~ The emotional and physical realities of living with scoliosis

~ The importance of building community and visibility for scoliosis warriors

~ What keeps her motivated to share her story and uplift others

Whether you live with scoliosis, know someone who does, or simply appreciate stories of courage, self-acceptance, and purpose, this conversation will leave you inspired.

Caroline Bell is a scoliosis warrior. She was diagnosed with scoliosis at age 15, wore a back brace, and had spinal fusion surgery at age 17. Like so many others before her, she had to learn every scoliosis lesson “the hard way.” After years of being mad at her painful back, she decided to learn how to work with it, not against it. This led to an intense journey of discovery, self-acceptance, and connection with the vibrant scoliosis community. It inspired her to create a resource that would resonate with readers, provide the answers they need in plain language, and support them through their own journey. She hopes her book will increase awareness, launch discussions, boost research, and normalize scoliosis. 

Connect with Caroline:

Website: tangledinthecurves.com

Instagram: @tangledinthecurves

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Transcript

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SPEAKER_02 1:20

Welcome back to today's episode of Unapologetic Living. I'm Elizabeth Elliott and I am your hostess. And I am always grateful when I get to share space with another scoliosis warrior and fusionneer. Right, Caroline? Yes, indeed. Welcome, Caroline. I have Caroline Bell with me today. She is the author of Tangled in the Curves, the ultimate scoliosis support book. I love it. Thank you. I love it too. Yeah, I don't want to jump right in to that, but I kind of just with that, you know, being so much a part of your life, authoring a book, what, and then we'll go to your story, but what inspired, and maybe we can weave it all together.

SPEAKER_00 2:09

Yeah, it definitely goes together. The inspiration came from a rather sad story. realization so a couple years ago I wanted to find support for myself for scoliosis I still hadn't met anyone with my fusion I was in pain I just thought it was time so I took to the internet as most people do and I got into like the groups and the websites and the discussion forums I got really overwhelmed and really sad with what I was reading which was parents of young children having the same questions and fears and worries and unknowns that my parents and myself went through over a decade ago. I was reading this saying, why are these questions still coming up? It's been over 10 years. We know the answers to this. We know what to give the parents. We know what the first next steps are going to be and we know how it feels. So why are all these people still scared and questioning everything? So from there, I got into actual groups where I got to talk to other people, fusion years, as they call us, with the spinal fusion. And some women who never had fusion and were considering it at an older age. And the conversations there were rather stark as well, because I ran into this whole other segment of the population, not the parents of the young kids today, but the older generation that have gone decades without meeting anyone else or finding support or knowing that it's not just them that have more than an ache or a pain in your back. So all of that together, I decided to take everything that we collectively know today, as much as I could as one person, one army of one, and pack it into this book that could just be handed out a diagnosis to the family. This is where you need to start. This is what scoliosis is. Here's everything that you don't know right now that we wish we knew right away. And to the older generation, here's all the support that you've been getting for so many years and you are so, so, so not alone.

SPEAKER_02 4:16

Yeah, I love that. So in visiting these forums and these groups, I mean, I, like you, just found them really in the last... Two or three years. And I know I've shared this before. It really wasn't until I herniated three discs in my neck. I've been, you know, just going along, living my life and doing my normal activities. But it wasn't until then I realized how connected. Actually, I ended up with tinnitus all of a sudden done. So this went to this. And it happened to be an OT who said, oh, that's connected to your thoracic spine, which is when I was like, ding, ding, ding, you know, oh, I have scoliosis, right? That's my biggest curve right now. And so I know it usually, I don't know what inspires, you know, that digging to just connect with others, right? but that was what it was for me. So what were some of the questions that you came across that people, like just maybe one or two, because I know they're probably addressed in your book. I unfortunately do not have it. I haven't seen your book yet. But what are some of those questions that came up?

SPEAKER_00 5:28

I don't want to oversimplify by saying the simplest question, but I saw a lot of parents asking what they did to their kids that caused scoliosis. Did I buy the wrong backpack? Like initial parental guilt. We don't need to go there. That's not what scoliosis is. You didn't do anything wrong. Nothing you did to your kid caused scoliosis. Park that. I saw that. And not just with the backpack, but different variations of that. Just not knowing where it came from. Because that's not talked about either. Never mind the diagnosis and everything else, but Unless, and I've seen this with a lot of people I've interviewed, unless scoliosis is already in your family, people don't really know what it is. It's not talked about so much that it's in the common conversation of everyday life. I met one woman, her mom thought it was a type of cancer. It's like, my daughter has scoliosis. Oh my God, cancer. No, that's not what that is. So the general education of scoliosis, at a bare minimum, was lacking in these forums when they got caught out of nowhere with scoliosis diagnosis.

SPEAKER_02 6:40

Yeah. And I can definitely see as a parent, I mean, I don't think because my mother and my great aunt had scoliosis, that was never, you know, that wasn't a question my parents had. They just, I think, assumed it was hereditary and passed down, even though, you know, it really, with that idiopathic for unknown cause is basically how they diagnose you.

SPEAKER_00 7:05

Yeah. That we know that it's a big hereditary component. There's a hormonal component. Yeah. But some of the families where you mentioned your mother and your aunt. Yeah. Great aunt. Yeah. Great aunt. So you had two people. I have it in my family tree as well. So we knew what it was when it showed up. And there's some people that either don't have it in their family tree, like very close, like a parent or a sibling. But maybe somebody up the tree had it very mild, was never diagnosed, never in any pain, but it's still in the family tree. And surprise, you get the bigger diagnosis down

SPEAKER_02 7:39

the line. Right. And, you know, I had two babies. They're adults. Neither of them have scoliosis. And I got to be honest, if my parents ask the question, will this affect your ability to have kids? I don't know that they did because my mom had already had three babies naturally. with hypnobirthing, you know, years before. So I'm not sure that was a question because I know in certain forums, I've seen that question, how will this affect my ability to have babies? And one of the things that she was told by her oncologist was that, you know, Elizabeth has no business getting an epidural. And so I opted, you know, for non epidural drug-free births. Because of that, I knew that my spine, because it was already crooked, was going to be more at risk for them to Missed the spot. Right. But that just because you have it doesn't mean your kids will also have it.

SPEAKER_00 8:38

It's not 100 percent. And it's true about any illness. Right. Right. Like there's no guarantee that your kid won't have anything like that. It's you don't know. I very well could not have had scoliosis, but these are the cards we're dealt and we're here and I get to talk with you and I get to share the story and hear all stories from other people around the planet with scoliosis. Would I rather not have gone through it? Sure, it's not fun, but is it really empowering and is it an amazing community of some of the strongest, most intelligent, most motivated people I've ever met? Yes.

SPEAKER_02 9:20

Easy yes. So now we're going to rewind so that you can share a little bit about your story. I don't know how old you are. I'm in my 30s. We'll leave it at that. You're in your 30s. And share with us how your scoliosis journey began. Sure.

SPEAKER_00 9:44

I say this about everything with scoliosis, that all of our stories are different. there are components no matter what that are the same experiences feelings sometimes that like curve diagnosis very similar so it's like a crossover um i was diagnosed when i was 15 and keep in mind it was already in my family they were supposed to be watching for it wasn't being watched i was going to a chiropractor for intense neck and shoulder pain that i'd had for two years before like I could not carry a backpack. I could not make it through a day sitting. I could not walk. Like nobody understood why, but my spine was straight. And when I turned 15, my dad gave me a hug. I was just heading to the school one morning and he's like, wait, what's that? Turned around and I had prominence in my low back on one side. So we know what that is, but went off to the doctor, took the x-rays and I already had, I'm a little different. Like I said, we all have slightly different stories, but my main curve is lumbar. So I had a, I think a 40 degree lumbar curve already in a mild thoracic, which explained that the back pain that I had started having just a couple months before paired with a growth spurt, of course, adolescent idiopathic scoliosis. Mine was a little later, but it happened. And it developed really rapidly, like in six months, it really took off. So little different than everyone else, but similar, right? Now I have two curves in my back and I'm a teenager. Whoops, like what happens now? So I was popped into a brace. I had a night brace for about two years. My curves were really aggressive. What can I say? The night brace, unfortunately, did not work out for me. It works out for a lot of people, just wasn't for me. And I had surgery as soon as I graduated high school. So that's like 17, 18. Right. Yeah. So I had spinal fusion surgery from T8 to L4. So mostly lumbar and quite low, not all the way. Okay. Yeah. Yeah. So, and then I was sent home, right? No, I had no PT. I just had to recover. I went out to college. I got a bachelor degree. I got a job. Like I did all the, the, the normal life growth things. And I never thought about my spine until it hurt me on bad days or until someone saw my scar and pointed it out. And that took a, took a self-esteem hit on me almost every time. So that like that went on for about a decade. And like I mentioned a couple of years ago, I got sick of the pain. I just, Got tired of not knowing anyone. I got tired of feeling like I was alone. And I found out that all these other people around the world were feeling the same way. So I wanted to do something about it. And there she is. My little book. That's the cold notes of my story.

SPEAKER_02 12:57

Yeah, so you were 18 and you've had no additional... Because I've heard of some, you know, individuals having multiple fusions or going, you know, multiple surgeries. And do you feel like it's restricted your movement? I mean, aside from you kept living your life. I mean, were you already active as a youth?

SPEAKER_00 13:22

You know what? I... was not, I'll be quite honest. Gym class was not my forte. I was never a runner. Of course, they told me before and after surgery, do yoga and swimming, and neither of those were things I enjoyed. So I would go against my will saying it was good for me, but I didn't like it. And yoga was never adjusted for my back. So it was even more frustrating when I was there because I had trouble doing all the poses. My sports were downhill skiing, Like, I live in Canada. It's winter here a lot. So downhill skiing, cross-country skiing, skating, snowshoeing, things like that, I just loved. And none of those really took a hit on my back. Like, they were low impact. I'm not skiing off of cliffs, okay? I'm just cruising. So none of them were low impact. They never took a hit on my back. It was more like movement and cardio without knowing it. And it was still good for me.

UNKNOWN 14:22

Yeah.

SPEAKER_00 14:22

I didn't really work out workout until a couple of few months before my surgery, because the best idea is to get in shape prior to surgery to make your recovery easier. So did that. And then after surgery, I kept up with my activities. I actually took a volleyball, which I loved being outside. Again, you're moving, you're reaching, you're working different muscles. And I still ski to this day. I will not stop.

SPEAKER_02 17:53

Yeah, I went skiing for the first time in 23 years in January. I was a little nervous, but I mean, it just came right back.

SPEAKER_00 18:07

Nice.

SPEAKER_02 18:08

Yeah, it was great. But I'm with you. I do see that one. I mean, I could see if you're going to be worried about a fall and what have you could get injured. I mean, you and you know, yeah, it is athletes without scoliosis get injured or, you know, hit hit trees or whatever. And I'm

SPEAKER_00 18:26

cautious, let's say. Yeah, there's no point with my, my personal mentality towards it is move, but don't risk anything. Like I'm not going to ski off a cliff just for the adrenaline of it. I had back surgery once and I would like to keep it at that unless something else comes up. But I've heard myself more in the gym doing exercises before I found scoliosis friendly adjustments and understanding my curb and my body. I've heard myself more in the gym than I did on the side of a mountain.

SPEAKER_02 19:01

Yeah. And that's, I think, you know, having like spent 20 years lifting weights, doing yoga and Pilates and just really understanding that, you know, and I feel strong and lucky, but that some of the moves that I was doing, as you just mentioned, were not scoliosis friendly per se, and could actually have contributed to like further curvature or further rotation.

SPEAKER_00 19:27

Yeah, that is a, among many of my pain points with scoliosis education that it took me that long to figure that out, find that, get those answers. I would have wanted those answers on day one.

SPEAKER_02 19:44

Yeah. And they don't give it. I don't remember either after my surgery. And that was what, you know, I was braced, but I don't remember. I know I did not see a physical therapist afterwards.

SPEAKER_00 19:57

I saw a physical therapist and a chiropractor massage therapist, like everything I could before the surgery because of the level of pain I was in. And by some fluke, I still have all of the exercises. I had a little binder and I have them all. I look at them today. I was like, no, no, no, no, no. With what I know now, I can't believe that I was given this with the fact that I have Like the rotation, I'm hypokyphotic also. So the opposite of kyphosis and a lot of the exercise they were giving me were to open my chest and just push into that curve as well. It's infuriating. So tiny part of my book also talks to that. Scoliosis specific exercises, seeking therapists with scoliosis training and understanding of the curvatures, the rotation, the rotation, difference in alignment and how the muscles work differently with a curvy spine. So important.

SPEAKER_02 20:57

So did you find that in the last few years as well? Or, I mean, and who was, what was, um, as was that through social media and the internet or, um, were you, was it Shroth? That's, I mean, that was my first intro to any sort of scoliosis specific exercise was the Shroth work.

SPEAKER_00 21:14

Yeah, me too. Me too. And, uh, it was, it was eyeopening. Um, I cried a lot when I got home after that appointment, because it was the very first time that I had a physio appointment that I got in trouble for wearing too much clothes. Like they wanted you in a sports bra. I was like, okay, I'll wear a sports bra. And then she's the woman, wonderful woman. She's like, well, I can't see your back. Cause it was one of those like racer back sports. Like, I can't see your spine. I was like, Oh, you're right. But also like, How have all my PTs in the past, like my whole life, treated me when I was wearing a full t-shirt? Yeah. Why didn't anybody want to look at my spine? Why weren't they looking at the muscles and the differences and assessing all of that? So I was really, really happy to finally have found those answers. So it was a very joyous moment, but also a very frustrating moment that it took this long. And how many other families are still going through this? That gets me every time.

SPEAKER_02 22:17

It is interesting because they do need to see more. I'm like, I got to disrobe, you know, a layer in order for my troth physical therapist. I think they're moving away from that word. From what I gather, the family wants to kind of, the family wants to keep their name and I forget what he's calling it now, but when he went up to the scoliosis, was it a, big conference up in Boston. Those last year. And while this was February, he said they were moving away from using the word Shroth. I forget how he, how they're transitioning that word, but you know, so many, I will use whatever word they want. Yeah, I know me too, but I forget what he said. And, but then, you know, it really, and it's helpful for me when I have less clothes on and I can see what's taking place. because if you're in baggy clothes, you absolutely cannot be even assessed or evaluated correctly. No.

SPEAKER_00 23:21

And you have to learn those exercises, take it home, do it at home. Like it's the consistency of the exercises help you out too. So if I'm in a big baggy shirt and then I go home and I'm in a big baggy shirt in front of the mirror, I have no memory of what I was supposed to do.

SPEAKER_02 23:37

Yeah. I know that. But I did find relief with it. Yeah, I mean, he he I was having a hard time. So I think it was the second or third once we got to where we were learning the exercises and we got past the hang and the partial hang. That was another thing that I didn't know is that someone with the fusion should not do a full hang.

SPEAKER_00 24:03

Yeah.

UNKNOWN 24:04

Yeah.

SPEAKER_00 24:06

And how many times did you do the full hang before you knew that? Cause I lost count. Right.

SPEAKER_02 24:12

And it's supposed to be beneficial. Well, maybe. Right. But when we understand that each, each and every individual, whether you have scoliosis or not, it's truly unique. Yeah. That, you know, what is beneficial for one may, may not be beneficial for another. And that was something I learned there, but I had started having him video. some of our sessions because I needed to be able to go back in and see what I'd done. Yeah.

SPEAKER_00 24:45

It's overwhelming. It's so much. And they're, they're all such a wealth of information to tailor it to your body. And then you have to become the expert and take that home and keep it up. Yeah. It's your body. It's your responsibility, but it's nice to have these actual scoliosis experts and whatever they want to be called, to guide us through it. Because you're right, there is no one size fits all solution equation for scoliosis all over the globe. I think there's a base of information, but then it's up to each individual person to figure that out and build your own toolbox out of it. And it's taken me years to do that. I think it's taken me years as well. My thought is the more information we can front load to families and get rid of the noise and the panic and the unknown, the quicker they can move on to building their toolbox and building a really good life with scoliosis without all the unknowns.

SPEAKER_02 25:44

So I had two curves and my lower, my lumbar curve, the degree were greater. I don't remember what, and there's no... record of it at this point when I started calling to find out if they could access, you know, 35 years ago information. They don't have it. And then my thoracic curve was, it's about 37 degrees right now. So what they did for me was they went in and fused T11 to L3. Okay. And it was a procedure that called the Zilke procedure. I don't know if it was kind of newer, but the goal was to help people you know work on straightening the lower lumbar and to prevent the upper curvature from getting worse I really don't know if it did or didn't I don't know but

SPEAKER_01 26:36

they

SPEAKER_02 26:37

definitely didn't like you said didn't educate me on how to uh I mean aside from just putting you know the the screws in how to continue to correct or maintain correction of that upper actually they didn't Do any really work on that part? They only did the lower curve. I will say I was so uncomfortable in my body at that time. And it led to a lot of body insecurities. And I don't know if you felt the same way that I did. I'm not sure I would have been able to welcome or even embrace some of the shroth with few, not to say few to little clothes on, but it would have been difficult because sometimes they get up and close and you have to be okay with that. And it's an uncomfortable time. I don't know if you, like, if you had information at 18 or 15, for me, it would have been more challenging because I'm just, if I can go back at my age, although I wish I would have had it then, and I wish I would have done it then. And I wish that do it and keep

SPEAKER_00 27:49

doing it. Yeah, I hear you a hundred percent. And I think with the wisdom of age now, looking back, it's easy to say, Oh, if I only knew about that, I would have done it better. And I would have done more.

SPEAKER_01 28:01

Yeah. I,

SPEAKER_00 28:02

I, I think it's both. So yes, it's hard to have someone like, all up around you. I found it really hard to stare at myself in the mirror and do the corrections and have to like be confronted by my, by the differences on either side of my body essentially and having to look at myself for an hour. I found that very difficult at the start. But then again, when I was younger and I was doing all these PT exercises, they hurt and like not in a good way. It was a bad hurt, but usually one side more than another. Now we know why. And I think having had someone explain to me what scoliosis was more than the sole scoliosis interaction I had, which was at the hospital with the doctors every once in a while. I think that, who knows for sure, but I think that may have softened the blow a little bit, if I can say that. Like having someone calmly explain it and explain what was going on and why we're doing these exercises and what they're doing. I kind of like the body engineering of it. And I did back then too. I think that would have helped. Would it have been easy? Definitely not saying that. But if I would have been seeing a difference and an improvement rather than just having my shoulders in even more pain than when I first started, I think it would have gone, it couldn't have been worse. I'll say that it's yeah. Definitely. Yeah.

SPEAKER_02 31:30

The explanation. And I agree to that. I mean, anytime I look in the mirror and I see the asymmetries, I can get a little depressed, you know, like I'm still learning to love this, the imperfections. Right. And it really stinks to, when you're shopping you see this yes amazing thing on the on the hanger or on the model and then you put it on and you it's not you know I mean for me I likely know it's not going to work so when I find something that works it's like

SPEAKER_00 32:01

hallelujah yeah yeah um oh yes I have many clothing stories on the head front and yeah it's tough you take a hit um and

SPEAKER_02 32:11

you

SPEAKER_00 32:11

learn to do that less and less and give yourself some grace.

SPEAKER_02 32:16

Yeah.

SPEAKER_00 32:16

But remind yourself that clothes don't fit every person anyway. Sorry,

SPEAKER_02 32:19

go ahead. Right. You do have to remind yourself of that because almost everyone out there has some sort of, I would think insecurity with a body part or this or that most of us can find something to nitpick, which we shouldn't. I don't want to say we shouldn't, we need to be more loving, right. And have more loving thoughts towards ourselves because we are just perfectly, you know, imperfectly human. But yeah, even, you know, but you're right. When you start to see these things and you're doing it in the mirror, it is it's. And then like, oh gosh, if I could just be this straight all the time, like you can see things going like, yeah. Oh, you know, but yeah. The thoughts take over. Yeah, they can. I think it's important to just go back to things like, and messages like, okay, everybody has

SPEAKER_01 33:06

You

SPEAKER_02 33:07

know, everybody is walking around with, with something that they don't, I mean, I don't know. I haven't met the person who doesn't find, you know, one body part they hate, you know? So, but so, you know, in that regard, I don't think we're alone. It's just, it can feel very isolating. Yeah.

SPEAKER_00 33:26

If I can add something, you just reminded me of something right there. The first time I walked into a scoliosis specific physiotherapy clinic and there were pictures on the wall of other girls with scoliosis. And I say girls because we know what the statistics are. But that was the first time I walked into a room and I saw all these pictures of backs that looked like mine that I'd never, ever seen before. So would 15-year-old me have been okay with that? Who's to say? But 30-year-old me was, wow, it's not just me. And then immediately followed by, wow, why is the first time I'm seeing this is right now.

SPEAKER_01 34:05

Yeah.

SPEAKER_00 34:06

So that, that helped because when you go to like, I'm just going to say a regular PT, lack of another term just to differentiate, but you go in there and you have the muscle and the skeleton posters on the wall, there's no asymmetry. Right. And you're looking at that and they're explaining, they're like, okay, it's like that, but, but your muscle on this side is bigger. Why am I different? Why, why is that not my muscle map on the wall? But scoliosis specific PT clinic, had all kinds of other pictures diagrams books everything that explained it was like oh i'm not an anomaly i'm not this one-off you know being that doesn't fit any of the forms that are on the other walls of other clinics there's others like me and we're going to understand this and we're going to figure it out and it'll be fine

SPEAKER_02 34:57

yeah so now do you integrate now are you still doing Do you regularly integrate some of the Shroth or some of the scoliosis specific exercises, corrective work into your life? I

SPEAKER_00 35:12

try to, I try to. I don't do like the full bar elongation just because I'm not set up with all that. But I will remind myself of like, oh, now that I understand my concavities and my curves, like you're leaning into them. Straighten up, do the breath work, take a minute, align a little bit, start at the feet. Like those concepts I try and pepper into my daily life.

SPEAKER_01 35:40

In my mind, it's better than nothing.

UNKNOWN 35:41

I know what I'm doing now, which is huge. I know where my concavities and convexities are. I fit that into my stretching routine. I stretch every day.

SPEAKER_00 35:51

Must. So those concepts have really, really helped me out.

SPEAKER_02 35:55

Yeah, I agree. And it's easier. And there, there, I mean, there's so much, and I work with some people with scoliosis, uh, in person. Um, I can start, you know, there, there's a, there, there's what, four different curve patterns, I think with, through, through with Stroth. And so it can be a little bit overwhelming at times. And I think it's important that we do know those con, vexaties and concave. I think it's important that we understand how our spine is sort of placed in our body and where, I mean, every time he asked me, where's your apex? Where's the apex? You know, he's always questioning, but he's so great at articulating why, what, how, and And so just having all of that information, it does make it so much easier when you go into a gym setting or Pilates studio, or even, you know, yoga, whatever it is that you're doing. Okay. These are the things that I need to try to bring into, become aware of.

SPEAKER_00 37:06

Exactly. Yeah. We don't all have to be, go ahead. Oh, go ahead. I was just going to say, we don't all have to be like full blown Shroth or scoliosis specific experts. But we need to become experts of our own spines. Right. We have to really learn and we're worth it. We're worth learning what our spine looks like and how it behaves and how it wants to move and how we can help it out.

SPEAKER_02 37:30

And by far, it has been the most difficult work. I mean, you could go deadlift, whatever it has. I mean, does not compare to some of the work that we have to do. No,

SPEAKER_00 37:41

no. And it doesn't look like much. It does not look like much. No, you're just standing there with a bar in your hand, but it's like, I am thinking of everything right now. Where's my concavity? Where am I breathing? Where are my feet? Am I aligned? What, what, what, what, what, what, what?

SPEAKER_02 38:00

Yeah. And it's exhausting. Yeah. I mean, it's easier to just put weights around. So I, I, I, I have a couple younger clients, and one gained a lot of success with Shroth. She had a 29-degree curve. I can't remember. Was it the longer? Anyway, I'm no expert. I really just know mine. And so her curve went from 29 degrees to 22 degrees. And then she started seeing a regular PT and it went back up to 28.

SPEAKER_01 38:45

And,

SPEAKER_02 38:46

you know, I strongly encourage a return to the Stroth exercises because she's experiencing more pain again. And so you, and then I have another young client who has scoliosis that they're just watching, you know, there's nothing that she can do for it right now. That's essentially what they've said. There's no need for surgery, but you and I know it's progressive and it gets worse. And, and she did shroth and she also was having a lot of luck. Okay. But it's interesting. Her physician, the spine doctor said, you know, there's nothing else. If you had caught it before, Adolescence with Shroth, maybe Shroth could have helped. And I just, like you said, infuriating because this is a progressive disease and it really has to be worked on for the rest of your life. Shroth is not a cure.

SPEAKER_00 39:48

It can if it's caught on. at the perfect time in childhood and you brace properly and you do the exercises, you can avoid surgery. However, we know- So you can

SPEAKER_02 40:01

avoid surgery, but do you think that you could avoid an increase in

SPEAKER_00 40:06

the curvature? I think there's been success. I'd have to ask my expert who has all the research and the studies for it, but you can avoid surgery, but exactly to your point, it's not a cure because there is no cure. You will, no matter what, no matter how much you bring down your degrees, you will always have scoliosis if you have it.

SPEAKER_02 40:28

Right.

SPEAKER_00 40:29

And

SPEAKER_02 40:29

surgery is not a cure. Right. And then, so you've got adolescence, but then you also have like pregnancy changes that, the hormones for pregnancy. And then you go into perimenopause, right? And so I think they're like, I just wonder, so, okay, maybe Shroth helped you get through a stage in life. I don't know. I was just, well, does that make, I was just thinking about it. Like I hate for her to go miss, right? You don't want people to go missed because they, they know they have it at this point. It doesn't mean it's not beneficial because they mean window.

SPEAKER_00 41:11

Yeah, no, I, I, I think there's kind of two camps of what trust can do. One is you catch it early. You're, trying to brace and shrug at the same time with the goal to reduce the curve, avoid surgery. And then there is the lifelong scoliosis where if you do these exercises and it reduces your pain, good. If you've had surgery, which is something a lot of people don't realize apparently is you can do shrug post-op. It doesn't stop being good for you after you have surgery because you still have those muscles and then those differences and imbalances. So if you still progress to surgery, that's okay. I've had surgery, you've had surgery. You still do these exercises. I don't think Shroth is, and maybe we're talking out of turn here because either of us are Shroth PTs, but I don't think it should be seen as only like the way to fix scoliosis when you're young. I think it's a set of exercises that are really beneficial to any curvy spine young, old, pre-op, post-op, whatever. It's about learning about your specific curve, your body, what it needs and what you can do to feel better.

SPEAKER_02 42:24

Yeah, absolutely. So now, okay. So moving forward, and this is kind of the conclusion that I have come to is that I don't know. I mean, I had, I did have luck with the regular PT for my neck and But I think I started compensating and using this arm totally different for my body work after the neck, which led to the tennis elbow. So it made me come to the conclusion, I think, that unless the PT is well-versed in scoliosis and how it can impact the knee or the left foot or the neck and the shoulder, because everything's out of balance, I don't know that I would go back to And I'm not saying avoid PT, but that's what I have. That's where I have come to is that I would probably only see someone who has a very good understanding of scoliosis, not necessarily shroth, but a very solid understanding of scoliosis and my particular curve. Yes. If I'm going to seek PT, even if it's something like a knee surgery. Yeah, I see where you're coming from. I mean, I have ladies with knees. I mean, and a lot of people have knee stuff. But you know, because of their scoliosis and a hip, you know, they've got these funky little spots. But you know, it's exacerbated and definitely connected to the fact that their spine and their hips are already off kilter.

SPEAKER_00 44:01

Yeah, I think I'm with you. I haven't experienced satellite pain outside of my spine. Yeah. So I haven't had to make that decision between what kind of PT I want and need, but I see where you're coming from. Like once you experience and you're right, not just trough only, but once you experience a scoliosis informed practitioner, it's like, it's, it's what I want. Like we speak the same language. They know what's up. They're not going to give me an exercise. That's going to exacerbate my scoliosis because they understand the powers within and around the spine.

UNKNOWN 44:33

Yeah.

SPEAKER_00 44:34

I think at least a base of scoliosis understanding is something I look for in any PT or like registered massage therapist as well that has made a difference for me. But yeah, not fully certified and strong necessarily, but know what's up with my spine. This is my time and money and my pain. So let's work. So

SPEAKER_02 44:58

can you talk a little bit about like a day in the life of Caroline?

SPEAKER_00 45:04

Sure. Okay. Well, I work entirely from home, so it's nothing really exciting. But I wake up from my bed full of body pillows because I like to be comfortable and supported in my lumbar and my knee and my hips. I do a little stretch. I have a yoga mat in my room, so I do a very calm stretch in the morning, try and wake up and get the wheels greased, if you will, and all the joints. Breakfast, morning walk. I love motion. Okay. I have to move. You've got to keep moving to keep moving. Motion is lotion. I say it all the time. Yeah. And then I go to work and I sit in a chair for too many hours in a row. As much as I try to take breaks and I'll get up at lunch. I'll go for another walk. Repeat for the afternoon. And then my evenings are usually, you know... like any normal person, I guess. Scoliosis doesn't really stop you from doing your day-to-day, but I'll run errands, I'll do something productive, make dinner, but I always stretch. I spend like an hour watching TV at night stretching. I have all these, I don't have them right beside me, unfortunately, but I have all these little spiky balls and I get in there with the knots in my shoulders and I do some breathing and props and I bake that time into my day. So it's not, I can't say any of my friends are as active on a daily basis or stretch as much as me just because they don't need to function. And they've got stuff going on, too. Don't get me wrong. But my day is about as much movement as I can.

SPEAKER_02 46:44

Yeah, I always second that as much movement as I can, because if I'm not, I'll get stiff. Like it's this like from that if I'm I'm at 90 degrees at the hips there. That me, you know, like you need to oil. It is lotion. I say that too. It's like you have to, it's like lubricating your joints, your tissues. And so movement is a huge piece of my day. And I'm with you. I always get the walks in. Sitting is a killer

SPEAKER_00 47:13

for me. But you know what? I interviewed another scoliosis woman when I was writing this book and she hates hiking. She hates hiking and she hates sleeping with pillows. Whoa. Interesting. Okay. Our fusion's a little bit in a different spot, but she's like walking just kills my low back and pillows kill my neck. So I just don't. Very different, but she loves to swim. So she, she has her motion. It's just like, this is going back to what we were talking about earlier. Like it's different for everyone, but it's

SPEAKER_02 47:44

not something I gravitate towards. I mean, it's, I'll get in. but it's not something that I, I, you know, I don't go swim laps, you know, I want water, but I first, I think it partly, it's just, it, it, that just that initial, like getting cold. Yeah.

SPEAKER_00 48:04

No, thank you.

SPEAKER_02 48:05

Yeah. No, thanks. And I, I don't know if you've listened to other episodes or not, but ever since my fusion, this left leg doesn't sweat anymore. So, that's interesting. So, if you happen to find anybody else, you know, that does... I'll let you know. Yeah, let me know because it's definitely unusual. My Shroth BT was going to dig into that, but he hasn't found anybody. So... I would love to

SPEAKER_00 48:36

get

SPEAKER_02 48:37

that turned back on. It might be too late after 35 years, but I don't know, maybe. The other day, I have a client, she wasn't using them. And I'm not sure what I think about cupping. I've never done it.

SPEAKER_00 48:55

I've heard good things.

SPEAKER_02 48:57

I know. And, and I, it seems like it could also, I mean, it is causing damage to the body because you see that it's, you know I guess bursting blood vessels, right? You end up bruised when you, now this client gave me, I was super tight and I don't know if it was because we'd hiked that day or what, but on the, on my more musculature side, I, She gave me these like self cuppers. You just stick them on. They seem to provide some relief. And I figure, you know, if they cause a little damage and, you know, in the meantime to have some pain relief, I'll bring them out sometimes. But I didn't know, you know, if you had ever used anything like that or are there body work modalities that you do like acupuncture or acupressure? I don't know.

SPEAKER_00 49:49

I think I'll try just about any of those treatments once. I haven't gotten to try cupping yet. And I've heard very different things from different people. A lot of people like us try all kinds of different practices just to see what works for them. Some people swear by some, hate the others. Some people love the others, hate the others. It's a total mix. Bodies are different. I haven't tried cupping. I have tried acupuncture more than once. But my... body doesn't react to it it's like already too much trauma and it finds the needles more traumatic so yeah not for me um but I uh I do like hot stone massages if you have that I love the heat that it gets in there and I have a lot of knots in my shoulders so yeah I do like that I think if if we're wrapping up, I think I have the perfect segue to pull everything together on the topic of treatment and hard work on Shroth and being in motion. I think it's cannot be overstated how important rest is though. Because our bodies, whether they're in pain or not, there's different balances going on. There's a lot in our mind, especially after a day of Shroth. I used to push myself every single day to move and I would keep beat myself up if I didn't move that day I was really really tough on myself because it's good for you it's good for you it's good for your back some days you just need to rest like a day on the couch might hurt my back but what if I just take like two hours and watch a movie and be okay with not moving and know that I will move again but I need to just sleep or read a book or just do nothing I've been leaning into the rest this year and it's new to me But now I've started talking about it and other people are like, yes. Yes, I have permission to give myself a break. That's also self-care. Doing nothing isn't doing nothing. It's resting and that's okay.

SPEAKER_02 51:50

Yeah, I have been leaning into rest too. Like yesterday, I was on the couch laying down and my significant other came home and said, what are you doing? Now, sometimes I usually have done it before he gets home. So he doesn't see it? Not even that. It's like, because I'm outside and it was, but it was raining here. And so I'm like, it looks different because I'm outside in the sun laying in a chaise lounge. So like he can get that one. But I was like laying down, my eyes closed. And he was like, what are you doing? And I was like, I'm just resting. But I have, you know, I think, you know, I mean, almost all of us are given this message that we have to go, go, go and produce and produce and produce. And, and yes, we literally, it's like you almost have to write yourself a permission slip to rest and that's okay. Yes. Do

SPEAKER_00 52:46

that if you have to.

SPEAKER_02 52:47

Yeah.

SPEAKER_00 52:48

Yeah. Literally somewhere in here. My chapters aren't numbered, so I can't give you a number, but I have a chapter called, you won't see it on the screen, but it's called horizontal time. Oh, nice. I like it. Horizontal time. get the gravity off of our backs, give our scoliosis a break, give our bones a break, give yourself permission to just lie down.

UNKNOWN 53:07

Yeah.

SPEAKER_02 53:08

Yeah.

SPEAKER_00 53:09

Yeah.

SPEAKER_02 53:10

Well, I am so grateful you joined me today. Thank you. Especially during this scoliosis awareness month. I think it's so important to get, well, thank you for having me. Yeah. And your book is available tangled in the curves, the ultimate scoliosis support book. Where, where is it available? I know I saw Barnes and Noble, but it's probably other places.

SPEAKER_00 53:31

Barnes & Noble, Amazon. It's on ebook, hardcover, softcover, whatever you like. There's a full list of websites you can buy it from on my website, tangledinthecurves.com.

SPEAKER_02 53:43

Okay. And so people can connect with you on your website, tangledinthecurves.com,

SPEAKER_00 53:50

on Instagram.com. On Instagram at the scoliosis book. And I put out, I try to put out a new reel every Wednesday about something relatable with scoliosis and or spinal fusion. I got more going on right now. Like you said, it's scoliosis awareness month. My favorite slash busiest month of the year. Yeah. So I've got collabs and thank you for including me on your podcast. I love that you're doing this.

SPEAKER_02 54:16

Well, thank you. Yeah, I'm so glad that you are out here doing the same thing. I mean, especially like I can and I mentioned it multiple times. I didn't know one person other than my mother, like I had no one growing up with that I knew had scoliosis. And so even even the people local to me now are adults in their 60s. And one of them, I mean, had you have you seen that Milwaukee brace? She was like up to here. It's horrible. I would love, I don't know if she would come on just to share her story. And then she was body casted for four weeks at a time from here to here, they would stretch her. So, so grateful that we have all these newer. It's

SPEAKER_00 55:02

come a long way. So it still has a ways to go, but it's come a long way. I actually know a woman. I think she's in her seventies that she, also had a body cast after surgery not even with metal like her spinal fusion is just bone it was pre-metal and she had the the big cast afterwards i love speaking with her because she talks about her story with me so openly and and quite vulnerable we're both talking about you know traumatic parts of our lives but yeah it's it's very different times the technology's come a long way the surgeries have come a long way but the feelings of feeling alone, not knowing what's going to happen to you, not knowing what the rest of your life is going to look like, because these surgeries usually take place so young. That thread is so common through all of us. And that's what I'm really hoping to help out with.

SPEAKER_02 55:51

Yeah, yeah, likewise. Well, thank you so much, Caroline. It was great to meet you in person through

SPEAKER_00 55:56

this too. Yeah.

SPEAKER_02 55:58

Have a great day. All right. You too. Bye.