Pretty Eyes Creates

So I’ve been MIA. I did a huge transition with my life but also with my hair. Change is good, and I am absolutely loving all the different shades of red I’ve experimented with. ❣️ My left hand has been really sore for what feels like forever, but almost everywhere else (neuropathic pain wise) feels really great due to my infusions. 🥇 💃🏼I can’t make things how I used to. This is to find a healthy balance with my time, new passions and “spoons” 🥄 However, I’m still able to do ice dye requests. ❣️ Thank you to everyone past and present who has supported me. Genuinely and truly appreciated!!

Blue Ice Dye Shirt for Syringomyelia Awareness! Swipe to learn more✨💙 Tomorrow the CN Tower is going BLUE for SYRINGOMYELIA AWARENESS! Truly grateful to be the Chiari & Syringomyelia Director for Carion Fenn Foundation. ✨💙 Thank you to each and every person who has and continues to believe in me and my advocacy skills!

ABOUT SYRINGOMYELIA⤵️

Syringomyelia is a disorder in which a fluid-filled cyst (called a syrinx) forms within the spinal cord. Over time, the syrinx can get bigger and can damage the spinal cord and compress and injure the nerve fibers that carry information to the brain and from the brain to the rest of the body.

Some of the symptoms but no two cases are the same:
🔹Curving of the spine, called scoliosis
🔹Changes in or loss of bowel and bladder function
🔹Heavy sweating
🔹Not being able to feel hot and cold in the fingers, hands, arms, and upper chest
🔹Loss of reflexes
🔹Muscle stiffness that may make it hard to walk
🔹Muscle weakness, especially in the arms, hands, and shoulders
🔹Feeling numbness, tingling, burning, or piercing
🔹Pain in the neck, shoulders, and sometimes arms and hands
🔹Paralysis (in severe cases)
🔹Headaches
🔹Swings in blood pressure levels
🔹Twitches, or involuntary muscle contractions
🔹Uncoordinated movements

WHY DO I RAISE AWARENESS?⤵️
Once I experienced locked-in syndrome, which my specialist believes was due to Syringomyelia and over exhausting myself. All I could move was my eyes and it was one of the scariest moments of my life. So now I always remind myself to pace myself and show myself as much grace as I do others! Let this be a reminder don’t judge a book by it’s cover!