Saturday, May 8, 2021
*What is EDS? – Jaime’s Health Journey Learning About Ehlers-Danlos Syndrome
Welcome to Health Saturday’s! This is my sixth blog post explaining what I will be authoring each day to pass on my words of wisdom or my B.R.E.A.T.H.S. from the seven areas I love the most: beauty, reading, education (financial), art, travel, health, and self care. Each day of the week starting with Mondays I will post a blog on the assigned topic.
This is my first Health Saturday post. I will explain why this topic is so important for me to share. From walking age to 15 years old, I fell all the time and just about every year I was in a cast with a broken bone. Hoarding crutches, ace bandages, ice packs, and ankle wraps, I was always ready for the next moment I would have a negative encounter with gravity pulling me to the ground and causing some sort of injury.
Clumsy, clutz, accident prone were all words to describe my physical capabilities in my youth. However, this didn’t stop me from playing all types of sports while wearing casts and face masks to protect the broken bones I always had. That was until I hit 15 years old, when a coach made the comment “that it wasn’t normal for someone to be so clumsy.” My coach worked with me in the mornings before school to strengthen my core and special exercises to help with my ankles. That was it, that was all I needed, it worked! I was super strong and athletic for the next 15 years, and then the unimaginable injury happened.
Around the age of 30, I slipped on a wet sidewalk wearing flip flop sandals. My sandals slipped while my foot slipped in the sandals causing a double leg jerk and I pulled my top quad muscle. I couldn’t walk, I had to crawl a block home and up the stairs in immense pain, holding back the screaming cries through the pouring tears until I could get inside. The top of my right leg looked like a golf ball was stuck under my muscle. I iced it, took some ibuprofen, and tried to sleep.
The next morning I saw red streaks of blood running across the top of the inside of my leg under the skin. Muscle stretch marks are the best way I can describe how it looked. I went to several doctors, sports medicine specialists, chiropractors and no one had ever seen anything like it, nor had any idea of how to help me, or who they could refer me to. The internal blood eventually made its way down to the bottom of my foot and went away after about a month. The lump on the top of my leg lasted about six months. Walking around work and home was difficult for me for the next year. I quit all my sports, gained a bunch of weight, and everything else seemed to spiral downward with the injury including work, school, and my love life for the next several years until I hit rock bottom, not once, but twice.
During the last two months of school in 2014 and 2016, I had a mental health breakdown at work as a teacher and took time off to heal both times. The physical pain also started at that time throughout my body, mostly my back wouldn’t stop adjusting itself, causing my back muscles to be overactive and sore. I had to sit most of the time I was teaching because I was falling more frequently at work, and my arms would ache from writing on the whiteboard for just a few minutes. I had clear warnings from my body that I needed to pay attention to.
Each time I had time off work, I used it to focus on regaining my health, strength, and mental stamina. I would read books, hire coaches for help, and really thought I was doing the right things to get better. Several books have helped, but one particular book by Louise Hay, “Heal Your Body,” helped me to pay more attention to my dis-eases so much that at the end of 2016, one disease in particular made itself present to me that would forever shift my life in the positive direction.
Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that comes in 13 different types caused by our bodies faulty collagen, necessary for our organs, as well as bone, muscle, ligament movement, and other tissue proteins. Each type has its own spectrum of severity. The most common type-3 hypermobility is the one that I have been diagnosed with. People with EDS hypermobility have bendy ligaments (some can bend our fingers, toes, arms, elbows, and knees backwards), stretchy skin, bruise easily, and are prone to falling often. Most people with any type of EDS show several mental health issues relating to fears of more injury, suffer with anxiety and depression, have brain fog, low fatigue, and low motivation to do much of anything. To find out more about EDS check out The Ehlers-Danlos Society (aka Zebra’s)
In December 2016, my best friend, Chrystal, was getting checked out by her medical team at her doctoral school on the East Coast. She has similar symptoms and the doctors wanted to test her for EDS, which she had not heard of. When she came home for Winter break, she explained the symptoms of EDS to me and I was in shock. That was me, that explained everything about my entire life of injury. I spent the next few weeks reading peer reviewed journals from my university library on EDS hypermobility. I typed up a report for my primary care physician explaining all the doctors I would need to be referred to and how to help me manage my own health. I took charge of my own health and that was one of the most empowering things I have ever done for myself!
Since January 2017, I have been working with my medical doctor who was able to refer me to all the specialists and give me time off work to focus on my overall health. I believe I have been blessed with this rare genetic disorder to be able to spread the word to others with similar symptoms, educate parents, teachers, and school nurses to catch this disorder early on, and be able to better manage life’s injuries. If something doesn’t seem right with your body, ask what is wrong, listen for the answer, the pain is there to teach you something.
That is what I am here to do on Health Saturday’s, pass on the teachings I have learned from asking my body questions, listening to the answers, healing with grace, and loving myself throughout the entire process. This is a space I am creating to discuss my health journey, publish health-related articles, explore other rare dis-eases, host special guests with Q&A sessions, and open up a public conversation about empowering us to take back control of our health to live longer, happier, healthier, and more prosperous lives.
Do you know someone with EDS or similar symptoms?
Thank you for reading this,
Dr. Jaime Brainerd, Ed.D.
*Disclaimer: I am not a medical professional and I am not giving any medical advice. My doctorate is in educational leadership and technology. I am a health enthusiast who feels that sharing health-related information I learn about myself might help others heal themselves as my mentor/teacher/favorite author, Louise Hay has taught me.