A.S. Face 0305: Malea Scott

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

10 Responses to “A.S. Face 0305: Malea Scott”

  1. My God! Malea..i must say u r a beautiful A.S. Patient… 😛

    btw its soo good that u have so loving a family …and that u have separated urself from negativity …i too am trying to be as positive as possible….

    but one question is i never knew A.S can be fatal also as in case of your father…how he died? do u have anymore info about him?

    Aal the best Malea…You are a Bomb for A.S,,,,,it will not survive in front of you super fighting spirit……

    • My dad deteriorated because he didn’t have the medical help he needed back then, and he was in Alaska so his condition was very advanced: couldn’t lift his arms and was wheelchair bound. I was very young and I don’t know the exact details, I do know that if he had had better help, and could’ve found a way to be more active, he wouldn’t have deteriorated like he did.

      Thank you for your kind words on my page 🙂 You are too kind!

  2. Thank you. I do agree about the part where we have to separate ourselves from negativity. Your story gave me a very positive feeling.

  3. wow what a wonderfull story, you are a rolemodel for me!!!!

  4. Mrelectricstl what a strong spirit you are. AND you are blessed to live in such a beautiful place. Thanks for sharing your story.

  5. Never give in to A.S like you I try to keep active also like you I have had these things said to me over the years me & my wife have 7 children all grown up now so I`m slowing down abit now had A.S for 43 year so getting a bit tired of it now good luck & hope your troubles with A.S are few. from Peter 0286.

  6. Dear Malea,
    Thank you for sharing your story with us. I admire your courage in sharing such a honest and inspiring story with the world. I am honored to call you my AS Sister for I am a face of “Yankee-doodle-osing-an-itis” also.
    Sincerely Cookie

  7. Thank you, your story is inspiring!

  8. My name is Candice Arkon and I was diagnosed with AS a few months ago. Until recently I have lived in Saint George UT raising my four entergetic boys. Reading that you still hike and ride gives me hope.

    • Candice, do you ever come back to visit St. George? If so, I’d love to meet with you sometime. Exchange ideas between fellow AS mama’s 🙂 Especially AS mamas with 4 boys. It’s like we’re doppelgangers! haha! Please email me if you’d like to meet up: maleascott@msn.com , or find me on facebook: Malea Hale Scott. Take care!!!!

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