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Friday, August 7, 2015

My Journey with Scoliosis [and related book reviews]

I have scoliosis. That is a fact and it is a part of my identity. I am on a continuous journey to correct my spinal curve. Part of this journey is educating myself and figuring out which approach I should take next. So I received and reviewed several books on scoliosis ( I will be adding more as time goes on). But before I can begin my reviews, I think it is important that I share my own personal journey with scoliosis. 

I was diagnosed with scoliosis, a curve in my spine, when I was about eight years old. It was purely an accident. My mom was seeing a chiropractor for her own slight curvature, and I was playing around on the scales when the doctor noticed that when I stood on two scales, one foot on each, one side of my body weighed significantly more than the other. So he decided to give me an X-ray. My curve was noticeable at that time, but it became more severe as time went on. The worst was during puberty when I hit a growth spurt. In several years, my spinal curve increased almost thirty degrees. I have an upper and a lower curve, each which are considered severe (my spine looks like a backward "S" from behind). To give you an idea, my lower curve is 57 degrees, and anything over 25 is considered severe and requires a back brace in the medical world. Anything over 40 degrees requires spinal surgery. 

An X-ray of my lower spine from 2008.
An X-ray of a normal lower spine. 





















As I was growing, my pediatrician refused to see me again until I talked to an orthopedic surgeon about a brace or surgery. We had our meeting with the surgeon and promptly decided to find a new pediatrician. Back surgery is invasive, dangerous, and debilitating. It should be reserved for people who are immobile and have no other choices remaining. Many people end up in more pain after the surgery than before.

Our goal was to avoid surgery at all costs. So the journey began. I have now been to eight different chiropractors, many masseuses, reiki healers, physical therapists, three orthopedic surgeons, naprapaths, acupuncturists, and many other types of people. I have done exercises, yoga, Pilates, swimming, stretching, and anything else I could think of to correct the curve and ease my pain. Some seemed to help temporarily, but nothing was fixing me. 

Out of all of those people, here are a few of the best tips that will stick with me forever: 
  • NEVER sit with your legs crossed. 
  • NEVER sleep on your stomach. 
  • Stretch as much as possible. 
  • Build your core strength. 
  • Keep extra weight off.

I live with constant pain. It varies in between painful and excruciatingly painful. Some days different parts of my body are worse than others, whether it is my lower back, my shoulders, my neck, my head, or my knees. My heating pad is practically another appendage at this point. And the pain is not just affecting my bones, it affects my muscles. My lower left back muscle protrudes far out from my body. The lower right muscle is very weak. My hips are uneven and so is my waist. Many people in swimsuits are worried about a little extra fat. Me? I am self-conscious about my muscles and bones. I feel deformed. Broken. 

My spine from behind. Notice the
uneven hips, shoulders, and waist. 
Scoliosis also causes emotional and mental pain. In school, it was the worst. I couldn't sit in one position very long, so I kept squirming and readjusting. I felt so embarrassed. My spine also pushes on my digestive organs, so I have constantly had to deal with the effects of that, which are worsening as I get older. I can’t stand for long periods of time. I also can’t sit for long periods of time either. I wake up in pain from sleeping, so laying down doesn’t help either.

I am at the point in my life where I am beginning to fear for my future. Will I keep getting worse? Will my body be able to support a pregnancy? Will I be mobile in 20, 30, 40, or 50 years? It rips me apart every day. It is also disheartening when each new doctor looking at my back is surprised with how severe it is. 

It is now time that I take control of my own body. I need to take the necessary steps to improve my pain. Making this post is my first step. I need to affirm my intent to get better. I need the support of family and friends to help keep me accountable. 

My second step is to educate myself. I cannot rely on doctors or other professionals who are not trained specifically in scoliosis. I need to be able to manage it myself and make my own decisions. 

My next steps are to be determined. So please join me on this journey…


[Side Note: One of my favorite chiropractors had me laying on a pulley system each time I went in to see him. The band goes on the highest point on my curve and then gravity uses my body weight to try and reverse the curve. It is extremely uncomfortable while using it, but it has been one of the few things that help relieve some of the pain, at least temporarily. When I moved away from him, I asked if I could get one for my house. He had one custom made for me (since he designed it himself). My goal is to work up to using it at least twenty minutes a day.]











The Beautiful Scoliotic Back | Erin Myers


“Here’s a simple way to visualize scoliosis: Think of your ribcage as a house. The foundation on which the house (ribcage) was build is crooked, making for a crooked house. From the crooked house, you sometimes get a crooked rooftop line (shoulders), and the windows may be uneven (shoulder-blades). Since the foundation of the house is a bit crooked, the basement (pelvis) may be a bit off-kilter, as well.”

Genre: Non-fiction—scoliosis
Number of Pages: 79

Erin Myers is a Pilates instructor with scoliosis and has specialized her Pilates program to helping people who also suffer from scoliosis. This book is for people diagnosed with scoliosis (or their parents/family). It could also be used by professionals looking to understand what a person with scoliosis is going through. For a complete summary and to learn more about Erin's programs, you can go here.

I’ll admit that I was extremely frustrated when I first got done reading this book. I was expecting the book to give me some great tips for how to correct my back, but that wasn't the case at all. It is actually mainly about accepting that scoliosis is a part of who you are and about becoming your own advocate. Erin talks about the importance of not letting this diagnosis prevent you from living your life. I was mad at first because her scoliosis is a very mild version. I’ll admit that I’ve always had the mindset that nobody really understands what I am going through. I was hoping that Erin would be that person, but she was all positive and happy-go-lucky about having scoliosis. I couldn’t help but think that she didn't really understand either. She understands more than someone with no back pain at all, but not as much as someone like me. After reflecting on the book more, I am realizing that she made some really good points. 

As much pain as I am in, I am still mobile. And I should be grateful for that. I still have time to try some new things and work on improving myself. But I was also hoping for some more concrete suggestions for how to do so. She talks a lot about the success that people have had with her scoliosis-specific Pilates program. I felt like it was all a big tease. Here's this awesome program that can help you, but it's in Nashville and there’s no one else that does this near you. It’s a great advertisement for her program for the people living near her, but I am still stuck in the same place that I was before. I know I need a scoliosis specialist, but those are extremely hard to find. She does offer a DVD with some exercises for scoliosis, so I might check that out. 

I do really like her message about being responsible for your own body. Every doctor and “expert” will tell you something completely different. That’s why it is important tot educate yourself and get the facts, that way you can make decisions for yourself and decide what is helping and what is not. 

Erin also mentions an organization called Curvy Girls, which is meant to support girls with scoliosis. I wish that I had known about that when I was growing up. Here is a link to the Curvy Girls organization page for more info. 

So my overall thought about this book is that it is a good starting place for someone who is just learning about their diagnosis and how to cope with it emotionally. For someone like me who is looking for a treatment and advice, than this is not really the right book. I am leaving this book feeling more empowered, and for that, I am grateful. If you are interested in buying the book, you can buy it here. After you have read it, leave a comment and let me know what you think! 

“The responsibility to learn about your body rests on your shoulders, and only your shoulders.” 


 4/5 Stars

*****

*Disclaimer: I received a free copy of this book, but it did not impact my review in any way.*


My Scoli Journal | Erin Myers


Genre: Non-fiction—scoliosis journal
Number of Pages: 102

This is a companion journal to go with The Beautiful Scoliotic Back. It contains places to write  about your feelings about scoliosis, treatments, exercises, and more. For a complete summary and to learn more about Erin's program, you can go here.

This journal is mainly to keep track of your journey and recovery with scoliosis. It seems like it is geared more towards children—which makes senses since most people are diagnosed as children or teens. 

This is a really great way to cope with the emotional side of scoliosis and to keep track of progress. I am definitely excited to use this in my journey to a healthier back. I probably won’t use all the sections with questions about my feelings, but I will use it to keep track of the degrees in my curves, the exercises I’m doing, and notes about what’s working and what’s not. 

If you are interested in buying the book, you can buy it here. After you have read it, leave a comment and let me know what you think! 

 5/5 Stars

*****


*Disclaimer: I received a free copy of this book, but it did not impact my review in any way.*



o Amber Gregg