While I’ve spent most of my life trying to ignore this crooked spine of mine and trying to “fit in” or “be normal”, at 53 years old I care less about what others think of me and more about who I might be able to help. So I’m sharing my story with the hope it will resonate with other scoliosis warriors (and possibly their parents) to help them deal with what can be a traumatic diagnosis and lifelong condition.
My x-ray report states: S-shaped thoracolumbar scoliosis with Cobb angles of 73 and 43 degrees with degenerative disk space narrowing. This has remained unchanged for the last 14 years…even post menopause, which can be a time when curves increase. My results from working out and eating an anti-inflammatory diet have inspired me to become a Wellness Coach so I can help others live an active, pain free life. Building core strength, eating real food and managing stress have been key for me. I am always happy to answer questions - just send me a friend request and let's connect!
Significant Milestones
- 1981 - 1984, ages 11 - 14: Diagnosed with idiopathic adolescent scoliosis; wore a Boston Brace.
- 1987, age 17: An orthopedic surgeon told me that my heart and lungs would be crushed if I did not have fusion surgery. Thankfully my parents left the decision to me and I emphatically declined. I had zero complications or pain and what he was proposing to do was extreme and life altering.
- 1988 - 2005, ages 18 - 35: Got my accounting degree, CPA, MBA and launched a successful yet stressful career in corporate America. Got married and started adulting.
- 2005, age 35: Chronic and severe pain showed up; I couldn’t move, stand or lay down without breath taking pain. The doctor recommended opioids for pain management after a 10 minute consultation and x-ray review. I declined, I was still able to work and function. I only went to make sure my heart and lungs weren’t damaged as the surgeon had threatened. I was also diagnosed with osteopenia around this time.
- 2009, age 39: I decided to take control of my health with at home workouts and an anti-inflammatory diet. I established my medical team at Mayo Clinic Arizona.
- 2023, age 53: I live an active, pain free life without over the counter pain medication or any other medications. My curves are stable and so is osteopenia (it has not progressed to osteoporosis).
My Story
I don’t actually remember how old I was when I was diagnosed and put in a Boston Brace. I don’t have any of my records from back then. I also don’t have any pictures of me in it. I believe I was 11 years old.
I do however remember the exact date I was fitted and had to start wearing it – July 29th. It was my grandpa’s birthday and we went to a family get together after. Weird how 36-37 years later that sticks as a memory.
For an 11 or 12-year-old girl to be put in one of these braces is tantamount to death in her mind. Kids are mean. Girls are especially mean at that age. Being “different” was not what I wanted to be. Since I grew up in a very small town I was one of the very few “different” kids.
I came up with every excuse possible to get out of wearing it. I joined every sport possible as that seemed to be the only “valid” reason for not wearing it. Hate is a big word but I hated that brace. I’m sure I made my parent’s lives a living hell because of it (sorry Mom & Dad!).
Now, however, I believe wearing that brace and going through this difficult time is probably one of the biggest events that shaped me into who I am today…and while I definitely have some lingering negative side effects, I choose to focus on the positive these days and that’s what I’d like to share.
I’ve become very in tune with my body. Pain, discomfort and constantly needing to think about standing straight or straightening your clothes will do that to a person. On another level, when I’ve tuned in with clean eating and exercise I’ve been taught by my body how to cope.
I’ve been forced to be a ‘healthy person’ to function. Living a healthy lifestyle is not an option like it seems to be for most people and it can be tough to be the only one at the party not drinking booze or eating sugar. “But hey, you’re at a party!” is what I hear often. While it is tough (and I’ll indulge occasionally), living healthy is a good and positive thing to keep as a priority, always.
I’ve been forced to workout daily and build strength. Many people think this is purely for vanity reasons but I literally have to if I want to stay mobile and pain free. Turns out pain avoidance is a very good motivator to stick with a program!
I look at body image much differently. When I am able to embrace myself as different I am also able to let go of what I think I am supposed to be and love who I am, imperfections and all. I am very grateful for all I can physically do. I am grateful for every pain free minute, hour and day.
I’m highly sensitive and empathic. I’m a super introvert (made that term up but I nearly peg every personality test as an introvert!), which I no longer consider a bad thing.
I’ve become a warrior of chronic pain with coping skills that make me strong enough to handle not only my own pain but also help others. My spine is the reason that I became a Wellness Coach and the reason I got a Nutrition Coaching Certification. I have a deep desire to help others feel well. Knowing first-hand how factors we can control like fitness & nutrition impact that is a big positive.
The first question everyone asks me is “do you do scoliosis specific exercises?”. The answer is no. I do what is called functional training. Functional training is a term used to describe exercises that help you perform activities in everyday life more easily. These exercises typically use the whole body — definitely multiple muscles — and emphasize core strength and stability.
All in all, I’m grateful I’ve gone through the scoliosis experience but it took a long, long time to get here.
To all the kids and parents of kids who are braced, be prepared for what could be a rough ride. Sending big hugs and positive vibes that you get through it relatively unscathed.
To all my fellow adult scoliosis warriors, I am sending you best wishes that you’ll find a solution that helps you live with a high quality of life!
I hope my story:
- Gives you hope that even someone with “severe” curves can lead a happy, active pain free life.
- Inspires you to take control of your health and wellness; movement and food is medicine!
- Encourages you to use your story and successes to inspire others. This can be a scary condition, we need to share our stories and connect with each other.
- Gives you COURAGE to push back on doctors if what they are recommending doesn’t feel right. Get a second, third, fourth opinion. 35+ years later my heart and lungs are fine and I am grateful I did not do the surgery. Nobody can predict our future!
Perhaps the greatest thing my parents, coaches, teachers and teammates did for me growing up was treat me like a normal person and did not constantly tell me what NOT to do because of this condition! As a result, I’ve never been afraid to take on a physical challenge.
This picture is from my Grand Canyon Rim-to-River-Rim adventure where I hiked 21.2 miles and over 5,000 ft elevation gain and loss in one day (one long day!). Not a lot of people do that so I’m proud to say I did. Just me and my husband trained, planned and executed this BIG bucket list hike!
I wanted to share this picture with you to inspire you to go after the bucket list adventures YOU have and assure you that YOU CAN DO HARD THINGS. You are Scoli Strong!!