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”

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

Cookie Has A.S. said this on June 17, 2019 at 5:29 pm | Reply
Dear Ann,
Thanks for sharing your story. I love your positive attitude.
Joy Last

Joy Last said this on June 17, 2019 at 7:39 pm | Reply

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