Hello! My name is Teena Amador and I am Ms. Pennsylvania US United 2021 and my platform that I plan to promote during my reign is chronic and invisible illness awareness. I have hypermobile EDS (hEDS) formally known as EDS type 3, Chiari malformation, and polycystic ovary syndrome (PCOS). My hope to inspire someone with any self-doubt or physical limitations to not being afraid of trying something new, be willing to be flexible, patient, and positive with your body and with whatever trial and tribulations may come your way.
November 9, 2010, was the day my life changed forever.
I was in a car accident – fender bender – by which I shouldn’t have experienced anything else more than whiplash. I was experiencing the worst migraines including sensitivity to light, nausea, and vomiting, and insane pressure in my head that I have ever experienced. I didn’t have a history of headaches so this whole world was new to me. I was having spotty vision, occasional numbness, and tingling on the left side of my body. The whole experience was just bizarre to me. It took a variety of doctor visits to finally get an MRI about three months later when these headaches just wouldn’t go away!
In February 2011, after the MRI, I was diagnosed with Chiari Malformation and Syringomyelia. Chiari Malformation is a neurological condition in which the tonsils of the brain extend into the spinal canal thereby causing a disruption in how the spinal fluid flows. This irregular flow causes pockets of spinal fluid inside of the spinal cord called Syringomyelia. My neurosurgeon advised I needed surgery but I had so much going on at that point in my life (graduation, marriage, starting law school), brain surgery was the last thing I wanted to do. I proceeded as normally as I could, finished college, and started law school.
Unfortunately, during my first year of law school, both conditions took a turn for the worse and I had to have emergency neurosurgery in October 2011 as the entire left side of my body went completely numb and the pressure in my head was unbearable. As a result, I had a golf ball-sized piece of my skull removed, my head shaved, and 25 staples in the back of my head (they call us Chiarians “Zipperheads” because our staples all together look like a zipper lol!). I was in the hospital for close to two weeks.
Fast forward to around 2013. I was still having migraines, chronic fatigue, my body just HURT all the time. I wasn’t sure if was Chiari related or if it was something else. I saw a Chiari Specialist who discovered that in addition to the two conditions I have, we discovered I also have hypermobile Ehlers-Danlos syndrome – a connective tissue disorder where my joints are hypermobile causing joint pain and inflammation, dislocation, and instability. What was critical about this discovery is that it explained why certain movements caused me pain (i.e. looking down too long at my books, – essentially because my neck joint is unstable my head was basically like a bowling ball balancing on a straw! It doesn’t have the support it needs for any sort of jumping or jolting activity like running or rollercoasters. This shed a lot of light on some of my physical limitations and had me reevaluate how I looked at physical activity.
I gained roughly fifty-five pounds over the course of those first few years, primarily because my mindset was not in the best place. I felt like I lost complete control of my body. Frustration crept in because I was not able to do what I was able to do before – I couldn’t even run without discomfort. It took a long period of time before I accepted the things I could not do anymore and wiped the slate clean to adapt to this “new normal.” However, I refused to accept this as my new normal. Six months into my recovery, I just wanted to get moving again. I was very active before this all happened. I began slowly, starting swimming and riding a stationary bike a few times a week. I eventually moved into taking a spin class and tailored the classes to meet my needs. I slowly began to branch out trying a class in strength training. Not letting my physical limitations stop me, I learned the importance of listening to my body and ensuring modified workouts to prevent dizziness or exercises that could cause a migraine.
This idea of modification has taught me how to be adaptable and flexible to not only trying new things but especially to not get discouraged in not being able to do the things I knew would cause discomfort. It taught me that modifications are okay – it didn’t make me weaker, or less active, or less adequate. My thought process would be was, “I know my body, that’s not a good idea. I will certainly do a modified version, and if the modified becomes too easy, I will try a few of the regular kinds, even if slow or just a few.” To me, the word “can’t” during this whole process was temporary. I took the time to listen to how certain movements (i.e. burpees, jumping jacks, mountain climbers) felt with my body. It took a good three years for my neck to establish the stability necessary to do these movements again (and now I can without ANY discomfort!)”
About ten years post-op, I am is continuing to feel well enough to keep testing the waters through listening to my body knowing her limitations are not limiting me. I’d rather let my limitations propel me to gain greater strength, a healthier diet, drop four dress sizes and lose thirty-five pounds. I am now able to run 5ks (slowly, but I finish!), and take boxing classes four days a week. Getting a little stronger every day – progress, not perfection!
What this fitness journey thus far (it isn’t over yet!) has taught me is to not only be patient but to be positive. This journey hasn’t only taught me how to train to be physically stronger, but also mentally. As much as I wish I didn’t have these invisible illnesses, these tribulations have taught me never to quit, keep fighting, and with that mindset, I can do absolutely anything! It was imperative for me to stay in the driver’s seat and stay in control. Of course, there are days my body just says “NO! Not today!” and I oblige, but ever since I’ve regained a steady level of physical activity, I feel amazing, confident, and happier than ever!”
