The Art of Resilience: Creative Adaptations and Joy Navigating life with EDS often requires a creative spirit. When my medical conditions shifted my physical capabilities, I was faced with the tough reality that some of my beloved art projects were no longer feasible. Instead of succumbing to frustration, I channeled my energy into exploring new forms of creativity that accommodated my changing needs. This exploration wasn't just about finding hobbies but was a crucial part of maintaining my mental health and identity. I've delved into digital art, using software that allows me to express my artistic vision without physical strain. The precision and flexibility of digital tools gave me a renewed sense of freedom—my creativity no longer had physical bounds. I have found tools that help me hold a stylus, paint brushes and even ones to help me make jewelry. With each new challenge, I find a new ways to access my creative outlets. My journey into adaptive creativity isn't just a personal victory; it's a testament to the resilience that all of us with EDS can cultivate. Every brush stroke, whether on a canvas or a screen, is a reminder that our conditions do not define our potential. The Power of Community and Family Support The road through EDS is one that should not be walked alone. Community and family stand as pillars of strength and refuge during the toughest storms. After my third cervical procedure, it was the support from my family and the broader EDS community that helped me navigate the complexities of recovery and adaptation. Their encouragement was a beacon of hope, a reminder that I wasn’t facing these challenges in isolation. Furthermore, engaging in online forums and EDS support groups has allowed me to connect with others who truly understand the intricacies of living with a rare condition. These connections are more than just a source of comfort—they're a vital resource for sharing tips, medical advice, and emotional support. It’s this powerful network that amplifies our collective voice, advocating for better research, treatment, and understanding of Ehlers-Danlos Syndrome. Acknowledging the Darkest Moments It's important to recognize that there are times when each of us wishes to throw in the towel, give up, and even stop fighting to survive. These moments can be profoundly challenging, especially when every ounce of energy is spent on seemingly simple tasks, like breathing or moving across a room. If you find yourself in one of these downward spirals, where it feels like the ground beneath you is about to crumble into the ocean, remember it's okay to take a few steps back—or even better, to leap backwards. Take care of yourself and give yourself the grace to feel all the emotions, to grieve the loss of abilities or to face challenges, whether they are temporary or long-term. Allow yourself this moment in time to feel, to be vulnerable. And when you are ready, strike your best superhero pose, let your cape flutter in the wind, and show everyone that it is possible to find a path forward, no matter how daunting it may seem. This act of resilience isn’t just about bouncing back; it’s about acknowledging the depths of our struggles and rising again with newfound strength. This is the essence of truly living with EDS—not just enduring life, but embracing it, with all its highs and lows. Celebrating Small Victories: Moments of Joy and Hope In the life of someone with EDS, the victories might seem small to the outside world, but they are monumental to us. Celebrating these moments is crucial. Whether it’s a day with less pain, completing a new art project, or simply enjoying a gathering with loved ones, these are the instances that fuel our hope and reinforce our will to persevere. Each celebration is a defiance of the limitations imposed by EDS; it’s an affirmation of life's beauty and the joys still possible despite our battles. By sharing these victories, we not only inspire others within the EDS community but also educate those outside it about the richness of our lives—beyond our medical conditions. Conclusion As we observe Ehlers-Danlos Awareness Month, let’s remember that our journey is both challenging and beautiful. We are more than our diagnosis; we are creators of joy, builders of community, and champions of resilience. It’s in sharing our stories that we find strength, and through our communities, we discover the power to not just endure but thrive. Let this post be a call to action—not only to those with EDS but to anyone facing adversity. Engage with your communities, share your stories, and celebrate every small victory. Together, we can turn the tides of struggle into waves of hope and triumph. #EhlersDanlosSyndrome, #EDSAwareness, #ChronicIllness, #InvisibleIllness, #SpoonieLife, #Resilience, #RareDisease, #DisabilityAwareness, #HealthAdvocate, #LivingWithEDS

I am being asked more and more frequently what camera & lighting equipment I use in my videography and digital platforms in addition to questions pertaining to my editing and recording software. To create great digital content we must need to take into account the whole production at a high level while paying close attention to the purpose, audience and longterm goals. In doing so we will pay close attention to lighting, camera equipment and the learning curve of respective software. The latter will be addressed in further detail in a future blog. Please note this post contains affiliate links for Amazon with the possibility of a small percentage being donated to Vicktorious, a 501(C)3 foundation. I have tried a half a dozen or more different types of desktop or table top lights in addition to my already existing slew of photography and professional photography lights. The 5 point articulating Lume Cube Articulating Arm is one of my favorites because 1) The light quality is superb 2) They can mount on the edge of a desk increasing the desk/tabletop real estate 3) They are powered by a separate power supply, which also supports power to the additional usb and usb-c port on the articulated arms 4) The light has adjustable Brightness 5) The Light Has Heat Adjustable Temperature output The Logitech Lita Beam Desktop Streaming Key Light comes in second. These lights are adjustable in that the main light bar is removable with a standard screw mounts at various angles allowing for unique adjustments in the beam location as well as adjustments in both brightness and light temperature output. The draw back with this particular light is that, although, it comes with a usb-c plug you will either need your own power supply or will need to connect the lights to your computer. (The benefit is Logitech does have an app that allows users to control the light/s from their desktop.) These are solid lights, adjustable and maneuverable. However for $20 more, you have additional power outlets, higher light output and lights with their own power supply. Personally, I prefer the later.