Climbing out of The EDS Spiral – My Zengo Story

My story – It’s not always about losing weight. Sometimes your story is about gaining strength and finding your “old” fit self (written over a year ago & updated)

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This picture is of me on my bike at Zengo Cycle and while I didn’t take it for the purposes of writing “My Zengo Story,” when I later looked back at it, I realized that there really was an important “story” behind the picture of me on a bike at Zengo. About a year and a half ago, my sister asked me if I wanted to join her in a cycling fundraiser for her elementary school, which was being held at this new indoor cycling gym called Zengo. I immediately said, “sure” even though I was weak and smack in the middle of the longest period of time that I’ve ever gone without working out consistently since I was a kid. When I responded with an excited, “sure!” my sister exhaled and said, “oh, God … ok. I feel like I’m going an execution range.” I responded, “Well … we both have to start somewhere – right?” I’ve always loved working out, health and eating right; so much so, that I chose Public Health/Health Education as my major, despite my concerned father’s question of, “and what are you going to do with that degree?”

When cycling first came indoors years ago, it was fun, “dance-y” and a great workout. Soon after, classes became more Lance Armstrong-ish and it just wasn’t the same. Since then, I’ve worked out consistently through college, after college, through 2 pregnancies, but then began to spiral downward after the my third pregnancy. I gained 60 pounds with each pregnancy, lost it all and more after baby 3, but I was not healthy. I have never suffered from an eating disorder, nor really had to battles with weight loss, but I do suffer from Ehlers-Danlos Syndrome (AKA – EDS: a genetic connective tissue disorder), which I was diagnosed with after the birth of my oldest son. Once I was diagnosed with EDS, I understood the reason behind my extreme flexibility, lack of coordination, my “lazy” eye, chronic fatigue, GI issues, why my knee dislocated, hypothyroidism, pelvic congestion syndrome, as well as many other misc. issues (the list seriously could go on). I’m not sure what caused the spiral after my 3rd pregnancy, but it was the farthest I’ve ever fallen – physically, emotionally and mentally. It was incredibly scary and the body that had become so strong and had so much muscle memory, was totally foreign to me. For someone who’s always been a fitness fanatic, I couldn’t believe how far down I had let my life spiral. I really thought, “This is it. I will never be as strong as I once was and/or not in chronic pain each and every hour of every day.”

Part of my spiral was due to dealing with horrible swelling off and on for 2 years, caused by an adverse reaction to a medication that I was taking. Unfortunately, this medication triggered Inflammatory Arthritis (not RA) & a diagnosis of early Lupus. These diagnoses came on top of EDS, as well as having chronic pain in most of my joints & debilitating fatigue almost daily. When this happened, I was just over a year postpartum from baby #3 and like a light switch that was suddenly flipped on, I dealt with the most incredible pain and swelling I’ve ever felt. It was like a fibromyalgia flare on crack; causing this sudden onset of even more debilitating joint pain, swelling, and intense & painful sensations from my skin being touched. It was like my husband and I had been sucker punched just after we stood back-up and started taking steps after losing our ability to walk for over a year. I researched, went to numerous doctors, had blood tests done, and took medications. Finally, almost exactly a year ago, really made a commitment to myself and my family, to fight the swelling and pain, through any alternative and healthy way that I could. I’ve always worked-out, but I changed the way I exercised, attempted to follow diet recommendations in order to decease inflammation and help with Gastroparesis (AKA – stomach paralysis and a secondary condition that can be caused by EDS), and anything else that would help calm my entire system and strengthen my body. So, after discovering the benefits of alkaline water through Gouter’s tonics, strengthening my mind, body and soul through cycling classes at Zengo, some barre classes, and many late night workouts at home, I did it!

The last 3 1/2 years have been the hardest years of my life and in many ways, I’m still picking-up the pieces and putting myself back together, literally and in all aspects – physically, emotionally and spiritually. Exercise and good nutrition are only one part of how I know how to get back where I need to be. I also believe that with commitment, discipline, and hard work, all other aspects in my life will fall into place. I love Zengo, because it gives you so much more than a good workout; and, in many ways, participating in a class at Zengo can provide all the counseling that you need, fulfill you emotionally & spiritually, and keep you physically healthy. There are many times when I’ve dragged my butt into Zengo, sat on a bike, and thought that I would slowly peddle my legs… if I even stayed in the class. My main goal when working out in general, especially when I’m not feeling up to it, is to just move for 5 minutes and after 5 minutes, if I’m still too tired, too weak, have too much pain, or feel too sad, I can stop. However, I’ve never, not even once, stopped working out after 5 minutes – especially not during a Zengo class.

My goal has never about weight loss. My goal is about how I can live as healthy and strong as possible while living with EDS. Yes, there are some people with EDS that cannot workout or have more mobility issues than me, but I am proof that you can build muscle despite having Ehlers-Danlos or any other Chronic Illness. I do understand that everyone is different, but I like to think positive and believe that there is something that everyone can do to live the healthiest lifestyle possible, no matter the barriers faced.  Many of us face the challenges of “The EDS Spiral.”  Everything I mentioned above are also the reasons why I devote my spare time to the Ehlers-Danlos National Foundation (EDNF), through answering HelpLine emails, as well as put together events, such as the EDNF Charity Ride at Zengo Cycle the past 2 years. Volunteering allows me to combine my passion for helping the EDS Community with love for health and fitness: In most cases, people emailing the HelpLine are requesting resources and information on how best to manage his/her specific case of EDS.

I’m forever thankful to my husband for standing by me, embracing and supporting each Zengo class reservation (he’s even started joining me at Zengo, as well as going on his own and completed his first half-IronMan), and welcoming the V, the owner of Gouter, each time she would deliver a box of my “mommy drinks” (as my kids call them) to our house. I know that I will have to deal with symptom flares for the rest of my life; however, I’ve proven to myself, yet again, that exercise and a healthy diet (specific for my medical issues), can do so much more than any medication.

I would love for you to join me on May 30th, 2015 at 1pm at Zengo Cycle. I will be there, peddling my legs just as fast as crazy Kelly’s, because I have become strong enough to do so and will ride for all of those who cannot. Here’s to an even healthier 2015!

2015 UPDATE on my Zengo story from last year (Excerpts taken from the Timeline in Our Stories of Strength – Living with Ehlers-Danlos Syndrome anthology):

June 2014 (post-EDS Ride for a Cause at Zengo Cycle last may)

“I received a message from Kendra on Twitter. She happened across my book, Journey to Health: A Holistic Approach to Ehlers-Danlos Syndrome, prior to attending the EDNF Conference in Houston, Texas. We conversed online – sharing of our lives, living with EDS, and raising families of our own. Those conversations turned to phone calls where an idea was born of a collection of “good news” stories coming together.

We each felt it was not only necessary, but that it was an injustice to the community as a whole, not to share these stories of strength, determination, and perseverance, while guiding others to begin shifting their perception of living to see the successes amidst the challenges. It is imperative to see the greatness that resides within each person as they step along this journey filled with countless ups and downs, celebrations and disappointments, good days and bad. We each have these moments, and often, they cloud our perception of what we are capable of achieving.

July 2014

After Kendra attended the EDNF conference in Houston, we began speaking more frequently with regards to the idea of a “collection of stories.” We built a rough outline of what topics we would like to cover, how we would market the book, and what challenges we expected to see. It was towards the end of July when we opted to enjoy what was left of summer with our families and pick up again in September, after school was in session and routines established.  Our deadline was to release the book by May 2015, just in time for EDS Awareness Month and for Kendra’s second-annual EDS Ride for A Cause.

Closing thoughts from Kendra (May 2015)

In the last four years, I’ve been through moving my family and renovating a house just after giving birth to my third child; much of which was done by myself. I’ve had a disastrous medical complication due to one medication that caused toxicity and changed my life forever. I’ve been through a financial disaster, my marriage nearly fell apart, the worst EDS spiral I’ve ever been through, struggles with friends and family, more financial issues, career stressors, and the never-ending roller coaster of being in sales, health issues with my children, more personal health issues, and I was left humbled, at rock bottom, with nowhere to go but up. I have had to rebuild with no safety net and little to cling to, other than faith that all things happen for a reason and I will find the purpose in all of this.

I would not be who I am today, have met the people I have, or been so blessed with so many opportunities to help others – including this anthology – without receiving my diagnosis of Ehlers-Danlos Syndrome. I have become comfortable with who I am without concern for what those around me think. There’s nothing to prove with regards to my health and everything to gain by discussing Ehlers-Danlos Syndrome publicly to educate, advocate, and change the perceptions of how others view this condition within the community and outside, too.

What I have come to realize is that I have a strength that I never knew I had; one true strength that empowers me through helping and making a difference in the lives of others, while traveling my own journey.  We really are stronger together.”

Save the date & grab your seat for the 2nd Annual #EDSRideForACause 

May 30th, 2015 at Zengo Cycle in Bethesda, MD!EDNF Charity Ride & Benefit 2015.pages

Join us for a great event raising awareness for Ehlers-Danlos Syndrome (EDS), just as we wrap-up National EDS Awareness Month in May!

Just like last year, all participants will receive an event t-shirt and we will also have give-aways, door prizes & great snacks! We will also be celebrating the release of the EDS anthology, Our Stories of Strength – Living with Ehlers-Danlos Syndrome, by Our SOS Media, LLC. 

All proceeds will benefit The Ehers-Danlos National Foundation (EDNF).

Questions?  Contact Kendra Neilsen Myles through this link or by email at kendra@ourstoriesofstrength.com

Please share!

Want to see how the EDS Ride for a Cause went last year? Go here: ‪#‎rideforacause‬ post-event post & general information on event from last year

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