E29 | Patient Experience with Kelly

In Episode 29, host Heather Rotunda and CLEAR Scoliosis Institute patient Kelly discuss Kelly's scoliosis journey and her experience with CLEAR treatment.

Throughout the episode, you'll hear:

• What she was told about her scoliosis diagnosis as a teen
• When she began noticing issues, and what they were
• What she went through during CLEAR treatment
• What she's learned throughout her scoliosis journey

We hope you enjoy the show!

For more information, visit clear-insitute.org.

To connect with Kelly, email her at bwellcharlotte@gmail.com.

Transcript

Heather R: 0:00

Hello, and welcome to Episode 29 of Life Beyond the Curve. I'm your host, Heather Rotunda. Today's episode is a bit different and it's one I'm very excited to share with you. Joining me today is Kelly, a CLEAR Scoliosis Institute patient, to discuss her scoliosis journey and her experience with CLEAR treatment that didn't just change her life, it saved her life. I hope you enjoy this special episode. Number 29, here we go!

Intro: 0:29

You're listening to Life Beyond the Curve, a podcast brought to you by CLEAR Scoliosis Institute. Each week, we interview experts in the industry, answer your pressing questions, and empower you to take control of your scoliosis diagnosis and live life to its fullest. Enjoy the show.

Heather R: 0:53

Thank you for joining us today, Kelly. I am so excited to share your story.

Kelly: 0:59

Well, thank you. I am excited to be here. My story is a bit wild and crazy, um, but it has changed my life, so I'm happy to share.

Heather R: 1:08

Wonderful. So first off, um, when were you diagnosed and, um, what led to that?

Kelly: 1:19

So I am kind of old, I'm 42 years old currently<laugh> um, or at least my kids like to call me old<laugh> and so I, I grew up back in the day and age when there was actually, um, health testing in school and one of the tests was, um, flexibility, mobility, um, and scoliosis. And so they found mine at the age, if I remember correctly, it was like 12 or 13 years old. Uh, they detected it in school, told my parents that they needed to look into it. Um, my parents took me to the local children's hospital and that's where it was confirmed.

Heather R: 1:57

Okay. So how much of an impact did your scoliosis have on you? Did it affect what you were able to do?

Kelly: 2:07

So, yes and no.<laugh> um, which is really a terrible way to put it. Um, I, if I knew, let me explain that better. Yes and no, because if you were asking me this 15 years ago, my answer would be, no. It was, I was told it would be purely cosmetic. I thought it was purely cosmetic. Um, and the things that I remember from growing up about it is, like, I had this little dress with a line of daisies and the line of daisies was crooked. Um, or I went, I wanted to be, um, a pointe ballerina, and I was told that my structure would not allow for that. Um, so like those things, yes, it affected me. But at the same time, my answer would've been no, cause I didn't struggle from pain. I didn't struggle from the rib hump that you see a lot of people have. I didn't have any of those things. If you had looked at me, you would've never known that I had scoliosis except for my little line of daisies was crooked. Um, and teachers actually used to always yell at me to stand up straight because of it. But pain-wise, health-wise, I didn't think it was affecting me. I didn't know that. Um, however, where I was 10 years ago, had you asked me this 10 years ago, instead of 15 years ago, my answer would've been yes, of course it impacted me, did it affect the things I had, I was able to do. Absolutely. Um, because, and we'll probably get into that in a little bit more of my story. Um, I'd find out later in life, that scoliosis is the root of so much that it cha-- it has the ability to change your health. It has the ability to change your immune system. It has the ability to change so much in your body without you even knowing it. Um, and knowing that now, I look back at some of the issues I had, you know, how I was the kid who had was sick all the time, or I had mono three times when you're only supposed to be able to get it once, or chicken pox four times when you're only supposed to be able to get it once. And I realize how much my scoliosis impacted my immune system, my body's ability to heal, my body's ability to function. And so the answer now is a yes, whereas 15 years ago, it would've been no, scoliosis doesn't affect me at all. Now I'm like, oh, scoliosis is the root of everything in my life, and changing my scoliosis changed everything.

Heather R: 4:45

Wow. So at what point did you start noticing problems?

Kelly: 4:53

So, uh, noticing problems that were actually related to scoliosis didn't happen until long after they were all done. Um, when I was 30, 30 years old, 30, in my early thirties, we'll go with that. Um, I had a breast reduction due to what I thought was back pain due to overly large breasts. Um, my doctor had me do a reduction. It was wonderful. It alleviated a lot of issues, but within six months I started to get super, super sick. Um, really random things started happening. Um, unexplained fevers, unexplained nausea, migraine headaches, uh, food allergies, air allergies, uh, rashes. Um, the list can go on and on and on and on. Um, and my body was really falling apart and, and getting worse every day. Um, I had no idea that any of that had anything to do with my structure. As a matter of fact, I was in and out of so many doctors, um, traditional medical doctors, or what's known as alopathic medicine, the stuff your insurance covers<laugh> um, I was in and out of those places so often that I, by the time I was done, I was a year, year and change into my issues and being so sick when, not only was I on 12 different prescriptions, um, and still being handed new ones, but I was still getting sicker by the day. And on top of it all, I went to see a specialist who was troubleshooting everything and he had run all these tests. I had been a human pin cushion for over a year at that point. And he sat me down and he said, so all of your tests show that you have no autoimmune issues, but your body is acting as if you have autoimmune issues. And if I'm gonna shoot straight with you, we're gonna continue to test. We're gonna try, continue to try and figure this out, but you've got about six months until you will be permanently hospitalized because I'm watching your body shut down before my very eyes. And I have no idea why. And at the time that, there were no answers. Um, but when you're told that you have basically six months to live, you're willing to try anything. Um, and so for me, that's when I started looking into the holistic side of things, because I had several friends who were involved in holistic wellness. And as a matter of fact, I had five or six friends who all went to the same holistic chiropractor and they said, you need to go here. I don't think you recognize how much your spine affects your body. You need to go, he'll teach you about it, he'll tell you about it, and he'll figure out if there's anything wrong. Um, and so I, for lack of better terminology, in my mind, I threw in the towel and I said, okay, I'm gonna go see this, even though I don't really know what it's about or what it's for. And shockingly enough, um, I had forgotten all about my scoliosis because I had been told it was only cosmetic and I walked into his office. He did a set of x-rays. He actually put on a teaching video that talked about the spine while he went and developed the x-rays. And through that teaching video, I was like, oh yeah, I have this symptom that they're talking about, I have this symptom that they're talking about, I have this symptom. And then he walked in with this x-ray with this extremely severe rare form of scoliosis. And he was like, this is your body. And I was like, oh crap, this all makes sense. And, and that was it. That was the start of my journey of recognizing that my scoliosis had been impacting my body, my life, and my health in ways that I had never imagined. And that the back aches weren't actually from having a large chest and that the muscles in my back weren't jacked up because of having a large chest or any of the other things. And so it just became this snowball of realizing that our structure isn't just to allow us to walk down the street, but it impacts everything about the body. And it was like all the bells and whistles and light bulbs started to go off. And I was like, nobody ever taught me any of this. My life would be completely different had I know. So

Heather R: 9:37

Wow.

Kelly: 9:40

<laugh> it was, it was complicated and twisted and really difficult to walk through at the time. But looking back now, I'm so thankful that I know what I know. And I'm so thankful to you for letting me share it, because I don't think just from the few interactions I've had, um, in some of the scoliosis groups I've joined, and the foundations, I'm a part of, I don't think people are taught enough about the root of scoliosis and what it can actually do to you, outside of whether it's painful or not. And so to come here and get to share where I've been, that's big for me, because I feel like it gives meaning to the hard times I've walked through.

Heather R: 10:27

Oh, that's a great way to look at it. So once you started with the chiropractor, what did that portion of your journey look like? How quickly did you start seeing a change in all your symptoms?

Kelly: 10:48

Well, I will say from the moment that doctor said to me, Hey, this is what's going on with your body, he was very upfront. And he said, I am not trained to treat scoliosis. I know enough about it to help you with the acute stuff. But when it comes to the actual condition, making change in that condition, you need to see a specialist, and I know the specialist you need to see. And I was like, okay. And that, that gave me grounding to trust him, right? Because he wasn't trying to do, or say, or be anything that he wasn't, he upfront told me, I can't fix this. I can help you right now, but he's gonna have to take you all the way. Um, so that was a big deal. But on the acute side of it, he started to work with me on, um, my structure, my muscles, and then he worked with me also on nutrition. And he did that to help reduce the inflammation that naturally occurs because of scoliosis. Um, and so just those few things, almost, almost instantaneously started to see results, right? I started to see some changes, um, within the first three months, um, I started to see more changes within the first six months. And at that six month mark, he said, okay, we've dealt with the stuff that's immediate. The stuff that is, hasn't been there long term, the stuff that comes from having taken 11 pounds off of your front and not preparing your muscles for the significant change in your body weight, literally overnight, or, you know, he walked through all of the things because, um, the, the augmentation surgery, the reduction surgery actually literally changed me overnight. I, they took 11 pounds off and the natural human body doesn't lose 11 pounds overnight. So my muscles weren't prepared for it. And when my muscles weren't prepared for it, my spine compensated for it. And the scoliosis was severe enough that that compensation made it a thousand times worse in one day. Um, so he started, he started to do those things and I started to see immediate change in the first three to six months, but it was at that six month mark he said, okay, I've taken you as far as I can go. I need to introduce you to this, this specialist, um, that I know. And that was when I was introduced to CLEAR, um, protocols and the CLEAR Scoliosis Institute.

Heather R: 13:13

Wonderful. So what was different? Since CLEAR doctors are chiropractors, what was different about the treatment you received with your CLEAR doctor?

Kelly: 13:29

Everything<laugh> Uh, everything was different. No. Uh, so when you go to a traditional chiropractor, you, you know, they adjust your hints, they adjust your, maybe your upper cervicals, they adjust your neck, any chiropractor you see, your, your adjustments should be specific to you and your body, right? Um, but in CLEAR, it's all different because it is, there is no question that everything is specific to you. Um, I chose to, because the specialist I needed was not in my state, I chose to travel to see them. And that meant that I chose to go through, um, what CLEAR calls an Intensive. So I was under care for 10 days. Well, yeah, 10 days, two weeks, um, all day, every day. And it was revolutionary. Um, what was different about it was everything from, I was being taught exercises I could do at home to help improve myself. I was using equipment that I had never seen before. Um, I was, the adjustment was actually the least of the process, right? So I was getting adjusted, but there was so much more to it. We were elongating my spine. We were altering, you know, realigning things, correcting the actual structure of it, not just doing adjustments. And then we were training the muscles on how to hold all of that. And that was something we didn't do at all in traditional chiropractic; you go in, you get an adjustment, and you leave. Whereas with CLEAR, you go in, you know, you go in, you do these therapies, but they also teach you how to strengthen the muscle so that your spine stays where you're putting it, not, I have to go back and get adjusted every couple of days because my scoliosis muscles are so tight that they pull it back out of alignment immediately. And probably the biggest piece for me and the piece that not only made the treatment so effective, but is why I can say 10 years later that I'm still seeing a difference is because the education. I wasn't just doing therapies. I wasn't just getting adjusted. This doctor was taking the time to teach me. What is he doing? Why is he doing it? What can I do at home? How does my food affect my body? How does my, the way I work out affect my body? And so I was not just showing up in a doctor's office, being treated by a doctor and moving on. I was being taught about my body. I was being taught about why I was doing what I was doing. And I was being taught about how to sustain it in a way that would continue to either see results or would stop or slow the progression, because scoliosis is a progressive disease. Um, the more I learn about it, the more I realize as you get older, it actually has the potential to get worse. And so I was being taught, how do I slow that process? How do I stop that process? And that was different than any doctor in all of my journey had done, was educate me so that I actually felt like, not only is it my body and I know about my body, but I know how to sustain the changes you're making. I know how, I know why you're doing what you're doing. And I know the benefit of it, not just the, because you're the doctor and I'm the patient, but because now you've shown me the lifelong impact, the holistic impact of what's going on in this moment for how it, it functions the rest of my life, or how it changes the rest of my life.

Heather R: 17:22

That's powerful. How are you doing now?

Kelly: 17:26

I'm great.<laugh> I am, I'm wonderful. I'm great. I have two amazingly beautiful children. When, back when I was so sick, they told me I'd never have kids. Um, there were a lot of things I was told I would, I was told I would spend the rest of my life on medications like Prozac and Zoloft and all of these things that they thought, you know, had roots of why I was so sick. Uh, I don't take any of those. I am on no prescription medications. I have two beautiful children. I am almost pain free. Um, but I also have been, so I went through the CLEAR Scoliosis Institute several years ago, which is before I had children. Um, we had the conversation before, before I was ever pregnant, um, because I was married and I knew I wanted kids, about how would pregnancy affect or my scoliosis affect my pregnancy and my body. Um, so I am almost pain free, but having two children, one of which was a 10 pound baby, by the time he came out,<laugh>, um, I, I have seen that my muscles aren't as great as they were. Um, my structure needs a little love. And because of that, I'm actually doing my best to try and piece together when can I go back through, when can I, um, I choose again, I wanna choose to do it in an intensive way. Um, there's actually a doctor who's moved into my state and my city. Um, so that'll save me the travel piece of it. But two busy kids means I don't always get the time off. So, um, I'm doing great, but I definitely have potential to do even greater. Is that an easy way to explain it, I guess?<Laugh>

Heather R: 19:09

Yeah, that, that explains it well. Um, so a question I get sometimes from, uh, people who are thinking about going through CLEAR treatment is the treatment painful? Or is that--

Kelly: 19:26

I'm supposed to be honest here, right?

Heather R: 19:27

<laugh> well, yeah, please.

Kelly: 19:30

<laugh> Um, it, now let me say this, first of allI Again, I did an intensive, so I chose to cram what could be a year's worth of treatment into two weeks, because of travel, because of my lifestyle, because of that. So I experienced the CLEAR protocols in an intense way. Not every CLEAR doctor that I've talked to offers that, um, not every CLEAR doctor that I've talked to, um, suggests that. And let me put in a caveat, why have I talked to multiple CLEAR doctors?<laugh> I, so prior to having my children, I worked for a major company that was one of the largest in the nation in my industry. And so I traveled three weeks out of the month. So I was never in my own city long enough to really get consistent care there. So I actually had multiple doctors in different locations so that I could continue my care after my intensive in a way, um, that was feasible for my schedule. So I've actually talked to multiple doctors, I've worked with chiropractors all over the area. Um, and so that's why, I don't want anybody to think, like I work for CLEAR or anything like that. Cause I don't<laugh> I love you. That's why I'm here. Um, but so that being said, um, it, it, it's not called Intensive because it's, it's a dance on sunshine and rainbows<laugh> Uh, the first few days were painful, They were difficult. And what I wasn't prepared for was they were also super emotional. Um, but I was also in my thirties. So there's a huge difference of an experience for the 12 year old who was sitting next to me, cuz she's all like cartilage and like young and bouncy and everything, like, just moves. Whereas I had 30 years of scar tissue, um, and we I'll be honest. I had to have that conversation with the doctor and with his team multiple times, because I was like, this is intense. Why is there this intense? And they were like, well, you're older. Your body has held this, you know, held onto this disease for a lot longer. Your muscles have, were literally shaped around this. Whereas the 12 year old sitting next to you is currently still being shaped. She's got like five more years to grow. You've been done for longer than she's been alive.<laugh> um, so it was, it was intense. It, it did have the potential to be painful, um, in the beginning. Um, but for the first part was I felt completely supported in that they never pushed me further than I could go. They never expected me to endure pain. They said, Hey, this is part of the process. But if I said, this is, this is too intense, we changed the process for that day. Um, and so there was always that level of support. And then, like I said, the other piece for me personally, was emotional. In realigning your spine, One of the things they talk to you about is your whole nerve system. So your brain communicates with your body through your nerves, and your whole nerve system runs through your spinal cord out to the rest of your body. So when you start moving that around and realigning it, it's like when you wash your car and you kink a hose or you accidentally step on the hose, the water slows, or it stops flowing. But as soon as you remove that, all of it starts flowing again. And so they explained that process to me, because what I started to see happen was I'd be sitting there, I'd go through a therapy. It wouldn't be painful, and yet I'd finish and I'd burst into tears. And it was actually the flux of suddenly my brain's able to communicate with the rest of my body. Hormones are moving, neurological communication is opening and my system is doing things It's never done before. And the body released that, my brain released that in some, some really powerful ways. Um, but fast forward past the first three days of the process and waking up on day four, day five, I was looking forward to going into the office. I was looking forward to getting treated because I was starting to see, I feel better. I sound better. I'm not having some of the symptoms I came in here with. And as a matter of fact, in those 10 days, the one major symptom that had been the first indicator I was sick became the last thing I ever experienced, because it was these random fevers that came outta nowhere. Like I'd wake up in the morning, perfectly fine. And by noon I'd have 104 fever or vice versa. And it was happening all the time with no explanation. And while I was in treatment, I had one last fever and then I haven't had one since. And that was nine years ago. I had a fever in the past two years because I got sick for a little while, um, with a pretty intense sickness. But, uh, that was, I mean, that's an indicator of my body was trying to fight the virus I had. Um, and so that was pretty normal. And after nine years of not being sick and not having a fever, I was like, oh, this is what, oh, now I remember what my life felt like back when I was so sick. Um, so did it, was it painful? In some parts. Was it ever anything that I couldn't handle? The team wasn't gonna let that happen. They walked through every step with me, making sure I was okay. Making sure, um, that I was doing what was necessary to fix it. Uh, and then it got easier as the, the process went on and in the end, looking back, every ounce, every moment of the first few days when it was so hard, absolutely worth it.

Heather R: 25:42

Great. So you mentioned the emotions. I think that was a great way to explain that process. I think the emotional aspect of scoliosis is something that gets overlooked too often. So I'm glad you touched on that.

Kelly: 25:58

Well, and I think a huge piece of it is, for me, a huge piece of it was finding out that all these diagnoses that I had had of being severely depressed, on the brink of bipolar. I mean, I talked to so many people who have scoliosis or struggled with scoliosis, or I see in the, in the groups that I'm a part of, these conversations about their mental health and how the pain impacts that, how the inability to find help impacts that. And when I was taught about how the neurological piece of it works and how the neurotransmitters, that, the neurotransmitters that affect depression are actually created in your gut and your nervous system brings them to your brain for use well, if your nervous system isn't working, you stick something in an elevator That's not working, It's never going to go all the way up, but nobody had explained that to me. And so I had embodied the thought process that something was wrong with me, that I was doing something wrong, that I wasn't taking good enough care of myself, that I wasn't working hard enough, that I wasn't trying enough and then I get to treatment. And somebody explains to me, there are things you can do. There are ways that you can work hard. There are choices that you can make to be healthy, but no, there's nothing wrong with you. We just have to return your body to the way it was designed to be, so it can do what it's supposed to do. And it was like a thousand tons of bricks lifted because I realized I'm not clinically depressed. I'm not all of these things that people have called me for years. My body just needs some help and I'm getting that help. And it was like the weight started to lift, the darkness started to, to go away, and I started to experience life. And I know it sounds really dramatic, but there was almost an element in those couple of weeks of getting to see myself. And really after I got home was where I really saw it, because I was back to interacting with my friends and my family and all of those things, and really started to feel like, oh, this is what it's like to live life, to come alive, to experience things in a way that I never knew I could, because I never knew my body wasn't working the way it was supposed to. And I can't help, but giggle because, um, recently, um, my faith is very important to me, and so I listen to Christian radio and on Christian radio, there has been a new song, um, that talks about"I pray for your healing." And it's a wonderful, wonderful song that I've really fallen in love with. But I, uh, almost fell out of my chair last week because I followed the artist on Instagram and I pull up her Instagram and the song is playing and it's a video and she's got a caption and she goes on, like, it explains that this song came out of a time when she was struggling with severe scoliosis. She had been diagnosed with depression, all of these different things. Um, and then she walks through her journey of how, in making some changes and making some fixes to that, the depression lifted and all that stuff. And I was like, oh, this is an experience that scoliosis patients deal with a lot. Um, and the emotional component just isn't talked about enough. So I was so thankful that that was something I was taught about during the process. And I rode the roller coaster of, to really realize that there's light on at the end of the tunnel.

Heather R: 29:49

Wow. That's incredible.

Kelly: 29:51

Right? And you never know that it's happening to more people than you, because scoliosis is something that's not talked about a lot. And so a lot of people don't know about it. And so you feel very isolated and alone with the diagnoses, with the problems. Um, and so that's why it was so cool for me to find yet another person and to hear her success story of where she went and how she's experienced it. So, yeah.

Heather R: 30:16

Is there any final thought or piece of advice that you would like to leave with the listeners today, Kelly?

Kelly: 30:25

There's like 9 million of them<laugh> um, but I mean, that's what happens when your whole life changes, right? Um, I think one of them I got to say, you're not alone. Um, you're, there's nothing wrong with you. Um, once you learn about what your body's doing, that's a big deal. Um, but I think, gosh, there's so many things. What would I wanna leave somebody with? Gosh, it's all swirling, cuz there's so many things I'd wanna say. Um, I think one of the big things I wanna remind people is you're your own best advocate. When I was seeing all the alopathic medical doctors, nobody taught me anything. They just kept telling me like, oh, you know, this is your-- the only option. This is your only option. This is your only option. Um, and I didn't know better than to go out and like, I didn't know better. So I didn't go out and explore. Had it not been for my amazing friends, saying there are other options, I would've never gone down this path. So one of the things I wanna say is you are your own best advocate, while Dr. Google is not reliable. Google will always tell you you're dying. Um,<laugh> there is research you can do. There are places you can look. There are people you can talk to, um, to find out more, to dig in deeper, um, surgery isn't the only option. Um, meds aren't the only option. There's, there is so much more to healing the body and how the body works, that I, I encourage everyone to be your advocate, um, to keep digging until you get to something that works for you. Um, and don't wait, don't wait. Um, the more I learn, my par--when I talked to my parents, when I went back and talked to my parents about being diagnosed with scoliosis at a young age, and what did we do and how did we walk through it? Um, it turns out I was actually suggested to have surgery when I was like 14, I think it was, um, cuz I had crossed over the 56 degree mark and all of that stuff. And um, my mom declined it because I was a dancer and a cheerleader and all the things at the time, and she didn't know enough about it. Um, so she chose to decline it. I've never been so thankful in my life for that. Um<laugh> but at the same time, um, I asked, well, what did they say from there when we said, okay, we're not gonna, because it would've, it would've been at that time. Um, they had told her it would've been weeks and weeks and weeks of recovery. My mom was like, we, we just can't do that to a young child. Like, no child should ha be forced to lay in bed for weeks. Um, so that was her reasoning behind it. But then I said, okay, so what did they do from there when you said no? And she was like, they told us, we just had to wait and see. And it's funny cuz that's what I keep hearing, um, now that I'm more active in the scoliosis community and had I known then what I know now, wait and see wasn't the answer because waiting and seeing led me to a place where I had to be on the brink of dying before I actually knew what was going on and how to fix it. And here's the thing, I don't regret any piece of my life. I believe that God uses it for good for those who believe. Um, and I don't discredit that in any way at all, but I, there is a piece of me that wonders what would the quality of my life have been had I pushed aside the wait and see and become proactive in learning more about my condition, learning more about my body, learning more about my options. So that would be my second piece. I would say always be your own advocate and don't wait, don't wait. Change starts with you. And it starts now and it's worth every minute of it. So yeah. Um, and then of course I'm gonna throw in a side note cuz I can. Um, so as I mentioned, this has changed my whole life, not just from a physical perspective, but I was so blown back by everything I was taught, um, that I went back to school. I am not a chiropractor. I am not a CLEAR Institute doctor. Nobody thinks that please. Um, I don't do the physical side of it. Anatomy physiology is not my favorite thing in the world. Um, but I to, I mentioned that they talked to me about how inflammation affects the body and how our food choices do. And so I went back to school, I went back to school and I got my doctorate in naturopathy and nutrition and herbology and all these other things. Um, and so there's that element of there's more to it. That's my third thing. There's more to it. It's there is your spine, there's your whole body. It is, there is so much, there's more to it. And so I just encourage people, when you're doing your research, when you're being your advocate, look at the body as a whole. And of course, if in any of that, anybody has any questions about my experience with CLEAR, about the food piece of it, any of that stuff. Um, please feel free in the show notes to put my email and have them contact me. I'm always happy to answer any questions, um, because it is such a big deal.

Heather R: 36:32

All right, I will do that. Thank you so much for joining us today, Kelly. I so appreciate you sharing your scoliosis journey with us.

Kelly: 36:40

Thank you. I loved being here.

Heather R: 36:44

If you've received a diagnosis and want to pursue alternative treatment, go to clear-institute.org and click on the purple Find a Doctor button at the top of the page, search by your location, and find the doctor nearest you. More to come next week.