What Now? These two simple words came to mind shortly after I was diagnosed with Type III Ehlers Danlos Syndrome!
I have always been accident-prone. It wasn’t unusual for me to suddenly lose my balance while walking down an even-paved path as though someone had slid a banana peel in front of me. I’d slam down hard on the ground, skinning knees and elbows. I even broke my leg walking to school with a group of friends, and do not remember tripping or falling. Growing up I was always the clumsy kid.
As an adult, my body is a well landscaped canvas of bruises and scabs resulting from numerous surgeries and picking from sheer anxiety. Some of the scars on my body are unbelievable, but each one tells a unique story of it’s own.
I never connected this clumsiness to how my joints and tendons seemed as fragile as an antique mirror. Ankles twisted and sprained at the slightest misstep; a jaw that partially dislocated from the simple act of chewing on a tortilla chip; knees that slid to the back of my legs at the smallest turn the wrong way. These incidences became less rare and more routine as time wore on.
I started to become more curious about my strange body after trauma from a car accident, November 2017. But prior to that, I have spent day after day sleeping as much as possible and not being able to concentrate long enough to read even a page of a book, and after numerous failed surgeries and treatments, I just knew something was terribly wrong. Kind and well-meaning people gave the normal advice which pointed to my pain and issues being all in my mind, in some way or another. I had a pretty shrewd idea it was all in the body, triggered by trauma. September 2018, I was finally diagnosed with Ehlers-Danlos III, Hypermobility Type by an actual genetics doctor. In a weird way, a diagnosis means freedom in the sense that at last I knew that the invisible aches, pains, subluxations, dislocations, chronic fatigue, depression, anxiety, chronic sweating, and inability to function had a real physical cause. I wasn’t as crazy as I had been made out to be.
This is my journey and how I have earned my Zebra Strips while maintaining my Christian Faith. Each and every day I am trying my hardest to make sense of this newly discovered condition that is unknown to most people, including medical professionals.
If you too have Ehlers Danlos, or if you’re supporting and loving someone else who has, and want to understand more – WELCOME! I struggle with writing a blog, because let’s be honest, who wants to listen to everyone else’s aches and pains when they have enough of their own? In all honesty, I’ve found it surprisingly therapeutic to write my feelings, struggles, and triumphs on paper. A diary of sorts. I will be posting pictures, articles, my thoughts and feelings as I go through this next season in my life. If by chance I help someone else, that would also be wonderful. Your ideas and thoughts matter to me – if at any time you have questions, please email me at the link below.
Thank you for your love and support.