I’m pressing play ….
Sometimes life comes full-circle and for me, it has in so many crazy ways. I studied public health in college, a degree that my father questioned what I would do with, but I felt so strongly about the benefits of good nutrition & exercise, that I just wanted to surround my life around helping other find ways to learn more, find motivation and remain as healthy as possible. And in college, I had no idea about Ehlers-Danlos Syndrome or all other related comorbidities, but I did have symptoms and signs and had them my whole life. My way of dealing was always exercise, nutrition and sleep (and still is in many ways).
Studying Public Health/Health Education in college was like studying a little bit about a lot of different aspects that affect our personal health and the health of different societies. In many ways, public health or health education, is very similar to what may refer to as “life coaching,” but with a ton more depth and you do not need a college degree to become a life-coach. We studied everything from sociology, to psychology, to pharmacology, to microbiology (my favorite), to chemistry, to exercise physiology (another favorite), to grant writing (not my favorite), to writing group health ed programs, to individual health plans, to countless theories on why people are so adverse to making a true behavior change, but the overall idea hammered home to us in each and every course, was behavior change and behavior modification (AKA – lifestyle change), are the only true ways to find long-standing changes in your health, overall wellness and life.
Fast forward to my EDS Diagnosis, additional diagnosis wrapped-up in having the “whole shebang” of auto-immune and EDS related comorbidities and now the “new” fad towards everyone needing not just a primary care physician, but a functional medical doctor, a nutritionist, a psychotherapist and a personal trainer to help them find true peace within themselves, overall wellness and to lose the 10lbs that they so desperately want to lose, which started after the flare of the yet-to-be-named, unknown, debilitating and devastating chronic illness that no one can figure out what it is and/or since the birth of their last child (and it wasn’t this hard to lose the weight the first time, so why is it now?), but a LIFE COACH! Someone who can help connect all areas of life and health, someone like a “wellness” coach, health advisor or health educator. Ummmm … hello??!!!!! Let’s just say I said, “I told you so” to my Dad several times over the last few years.
Imagine my surprise when I was first diagnosed with EDS and told not to continue working out. What did I do? Yup, didn’t listen. Kept kickboxing, kept lifting weight, kept doing … I used to say, “Well, I know I’m not supposed to, but if I’m really going to deteriorate with age (which I actually did not believe for the most part), then I will do so as I’m doing what I know makes me feel good, strong and has helped me thus far.”
Needless to say, I kept to myself in my own bubble, working out, eating as healthy as I knew how and remained up-to-date on the latest EDS information that came out. Each year during my routine check, I would check-off another year of getting older with EDS and another year of continuing to work out, despite being told that it was not good for those with EDS. I have had 3 children, started my own medical sales business, said no to accepting social security disability, have been asked various times to speak publicly about my journey with EDS, started EDS Patient Solutions, volunteered with EDS charities and have been down the EDS Spiral approx. 6x. And you know what? With each EDS Spiral, the only way I was able to climb out, is through proper nutrition, safe and effective exercise and an overall positive attitude.
Do I believe that my recipe would work for everyone with EDS? No, because what works for each one of us is about as varied as our individual cases of EDS and life circumstances.
Do I feel that some variation of my recipe would work for most of those with EDS & related conditions? Heck yes I do and I’ve now seen it in countless variations, since coming out of my bubble (Thanks Social Media!), from people who seemed to be blessed with suffering very little from EDS, to those who suffer greatly. And yes, I’ve even seen it with those who have vascular EDS.
I do not think life with EDS or any chronic illness is going to be rainbows and butterflies if someone just changes their diet and exercises a little bit. However, what I do know is that adequate nutrition and exercise are just 2 large pieces of a very complex pie, which has a crust called “belief” and a topping called “positive attitude.” All else just mixes somewhere in the middle, but belief holds the “lifestyle change” pie together from the bottom and positive attitude ensures that the topping of the pie doesn’t fall apart. And when put together and baked properly, with patience and dedication, the result is decadent. What does that mean to us? That means we’ve found our own perfect wellness pie recipe.
What once started as a passion, a lifestyle and a chosen major in college, has now come full circle and provided the basis for this website & blog, as well as for EDS Patient Solutions.
And that is why I’m pressing play ….