A.S. Face 1921: Melissa

I began to feel weird aches and pains in my late teens. My complaints were always brushed off as aches from weight, sleeping wrong , or “it happens”. After my first son was born at age 22, I had what I now know what a flare. I couldn’t walk for a week without help. I was told it was sciatic pain since my son was so big. It was normal. I had a flare in my neck for my next son. I woke up with severe pain and swelling for no reason about 6 weeks post delivery. That, was from me sleeping wrong they said. But it lasted 3 months … And still bothers me today. My wrist would swell, my leg would swell, my foot would ache. My legs would feel so sore if I sat in a car ride , and I would avoid doing things like the zoo.. or family outdoor activities. It was too painful. My next child was born and I had a major flare in my center back. I couldn’t sit up without help. I would fall. It would completely give out. Not too long after she was born I was diagnosed with a pituitary brain tumor and had surgery. During my recovery from that.. I had a flare in my wrists. I couldn’t even hold a piece of paper. Then a couple weeks later .. it was my shoulder. My doctor finally stopped thinking I was crazy and had a hunch. She tested me for the HLA B27 gene. I was positive . That, with the MRI’s she ordered.. showed not only do I have AS.. I have it severely. I have calcification in my feet, and Achilles tendons. I have erosion and calcification in my knees, and I have fusion and erosion in several spots of my spine. Also, my left SI (joint) also has erosion and damage.
I was healthy for the most part. Just always stiff in the morning and sore all over if I was in the car or at a movie theatre . I would joke to my husband that “I feel like I am 100 years old” or “I feel like I’ve had the flu for a week”. My brain surgery turned my already bad AS, into a full on vicious attack. I can’t work anymore. I had to quit school with only 100 hours to go. I have a helper at my home a lot. I had $90,000 in medical bills from April-December of 2017. Having AS has taken my strength, my ability to care for myself all the time alone.. and my ability to do little things like shop or enjoy company. What AS won’t ever do however , is make me give up.. or make me take for granted the wonderful things I do have. This disease sucks . It’s nothing I even ever heard of before I was diagnosed . I am fortunate to have a tremendous support system ,. The worlds greatest and strongest husband .. and loving friends and family.. including 5 and one on the way beautiful children who love me even when I have to love them from my chair a lot. I’ll continue to share my story, so we can raise awareness and make some much needed advances in our treatment options! I am now 33 years old and was diagnosed at 32 years old.

Michigan, United States of America

3 Responses to “A.S. Face 1921: Melissa”

  1. Dear Melissa,
    Thank you so much for being a part of my vision.
    Sincerely Cookie

  2. Any time my friend . I’m glad to be a part of what you are doing . ❤️❤️

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