A.S. Face 2167: Ann Johnsey

Greetings! I am 38 and live in MN with my incredible husband and two beautiful children. I’ve suffered from back pain since early teens and discovered I had severe scoliosis at the age of 14. I had spinal surgery for Harrington rod placement at 15. Went in 5’8” and came home 5’10”(although have since lost some height). Throughout my teens and early 20’s I suffered immense pain Dr’s accredited to sciatica, scoliosis, mental illness
and/or being overweight. Not getting answers (or help of any kind) lead to self medicating for many years.
At 30 I began experiencing neuropathy & many unexplainable ailments. I was diagnosed with Fibromyalgia and put on 12 different medications that made me very sick. I knew something wasn’t right and over the course of the next 2 years I saw 6 specialists, gave hundreds of vials of blood and trialed too many meds to count being told I may have Leukemia, MS or Lupus; eventually ruled out. At 34 on my sons 1st birthday I almost lost my eyesight to a horrific bout of iritis that took 6 months to recover from. It was then I received my AS diagnosis after an Ortho took blood work and MRI’s to discover I was HLA-B27 positive and spinal fusion (bamboo spine) had begun. I cried. I was both relieved to have answers and fearful of what my future would look like for myself and my family. It’s now been 4 years (2019). I have a team of Dr’s I see regularly. Some days the pain is unbearable and others I celebrate simply being alive and able to feel and be somewhat “normal”. This disease has taken so much of me as once an extrovert and the life of the party. I now live day to day, as that’s all we can really do with an unpredictable body. I also live with a different kind of appreciation for life. Every day I wake up grateful for all that I have. I choose to be positive where & when I can as it’s easy to get lost in dark places. I am so grateful for this page and others like it. It’s important that we find understanding & support with one another and my hope is that the medical community will have more knowledge and COMPASSION to understand us & this disease better. I pray each and every day for all of you. We are in this fight together. Stay strong my fellow warriors. You are never alone ❤
Ann Johnsey
Oakdale, Minnesota, United States of America

2 Responses to “A.S. Face 2167: Ann Johnsey”

  1. Dear Ann,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Dear Ann,
    Thanks for sharing your story. I love your positive attitude.
    Joy Last

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