Life Slows You Down For A Reason
My name is Cloud and I am 35 years young to the naked eye. My bones tell a different story entirely, on the inside I look about 75. These diseases that I am blessed with are all internal, invisible on the outside.
As a teenager, it was difficult to get people to take me seriously when I complained of something feeling wrong inside of me, so I learned to suffer in silence throughout my twenties as I battled chronic pain, uncontrollable sleepiness during the day, and insomnia during the evening. At 30 years old I was finally, after a decade of doctors tests, diagnosed with Ankylosing Spondylitis and Narcolepsy with Cataplexy.
Narcolepsy is a chronic neurological disorder of the sleep/wake cycle, and Cataplexy is a symptom of Narcolepsy where I get sudden muscle weakness triggered by strong emotions or exhilaration. Ankylosing Spondylitis is a form of arthritis that affects the spine and joints and leads to ankylosis -- new bone formation -- causing sections of the spine, and other joints to be fused in a fixed, immobile position.
Upon diagnosis, I was prescribed a long list of self-injections, immune suppressors, anti-inflammatories, narcotic pain meds, and amphetamines to manage and slow down symptoms. At the time I was alone, uninformed, and scared for what a medicated future would look like, so I politely declined everything. Instead of succumbing to the pressure of my physicians, I opted for a holistic route. It was important to me to learn how to live with my diseases naturally before I began pumping my body with medications. I moved to an island so I could lead an active yet stress-free lifestyle and there Yogance (a blend of yoga and interpretive fee movement dancing), a clean diet, and a positive mindset became my salvation. I use a cane on days that I don’t have enough spoons and strength to support me and have gathered a tribe who loves unconditionally and helps with lots of little daily to-dos that are difficult for me.
In addition to what I already deal with, a year ago I experienced a traumatic brain injury and concussion that has left me with more neurological and cognitive problems than I can recall. Memory loss and sensitivity to all stimulation have been some of the many symptoms I have been struggling to manage this year. The head injury has forced me to relearn lots of basic tasks and slow my life down even more than the conditions I already carry and it has been a great struggle to even leave the house or keep up with my peers. One beautiful side effect of the recent injury is I seem to process information differently and see things in ultra-vibrant technicolor and it has been having a beautiful impact on my creativity and art!
I worked hard the past 5 years to create an easy-going lifestyle that better suited my simple needs and allowed me to live a minimalist lifestyle. By turning my hobby of crocheting into a small Crochet/Fiber Art business I gave myself even more freedom. @Gypsysugarcrochet & @CloudCrochet is where I design crochet couture for photoshoots, weightless statement earrings, and am currently working on a Coral Crochet Project to help promote ocean awareness and coral conservation efforts.
My home is an Airbnb for all who want to visit me in Puerto Rico and experience adventure and island life (@cloud9casitas), and I have a small tribe of artistic friends who do collaborative photoshoots for a wide range of causes. No matter what hurdles life throws at my body I will always find a way to be a source of positivity. I utilize my different Instagram pages to connect with others and share my life of living with invisible diseases in hopes that by sharing my story I can inspire others that Yoo Can Do Anything!