My name is Malea Scott. I’m 35 years old and I found out I had A.S. nearly two years ago. I’m a full time stay at home mom to four gorgeous boys. One of those boys pronounces A.S.; “Yankee-doodle-osing-an-itis”, and consequently, so do I. I am also wife of 15 years to the most supportive, handsome, loving…lover of a man 😉
I live in Southern Utah. The summers are hot and the winters mild. It is the most wonderful place on earth a person who has this rotten disease could live. I am able to hike (when I can) and road bike (also, when I can) amidst gorgeous red cliffs and mostly blue skies.
I usually try to stay as active as I possibly can. I love to road bike, dance, ( I have been on a Polynesian dance team performing routines from the islands, which are wonderful for my spine and hips), and swim. When the weather is mild, I love to garden and get my fingernails REALLY dirty. Traveling is a passion of mine and my entire family. My husband works for an airline, so we have the ability to fly for free. Nothing, absolutely nothing can get my butt off of my couch during a bad flare except for the promise of a traveling adventure with my family.
I have a really high tolerance for pain. I really try to suck it up. When I can’t, my kids, husband, and friends rally around me. I count my blessing every day for them. The last year has probably been the most trying on my spirit as I’ve gone through surgery on my spine, hips, legs and feet. I’ve also been accused of being addicted to prescription drugs, and consequently a thief, faker, and liar by my mom, dad, and sisters. They don’t understand this disease and have not taken the time to either listen to me, or do additional personal research. I’ve completely separated myself from their negativity and have found my flares were also linked to the stress I felt from their insidious scrutiny.
My biological father, Brent, is my guardian angel through the hard times. He also had A.S., and died when I was only a year old due to complications of the disease. He lived in Alaska, did not have access to medication, and was told by doctors to numb the pain with wine or beer (which he did not believe in). Thinking of his circumstances gives me perspective and a great sense of gratitude for access to wonderful medical information, the ability to modify my diet to control the pain, and even medicine to function in my most important role, as a mom and wife.
I understand that this disease totally sucks. But I also know, beyond any doubt, that I have a Heavenly Father (God) who loves me. The lessons I am learning through coping with A.S. are absolutely for my greater good. Service to my family and friends gives me my greatest happiness. I will continue to work everyday, in my personal office of healing, so I may continue to be totally there for those who are totally there for me.
My name is Malea Scott, and I am a face of “Yankee-doodle-osing-an-itis”.
Utah United States of America