A.S. Face 2101: Mary Jo

Face 2101Face 2101a

I wanted to share my AS journey… In retrospect i likely had AS since childhood. I was diagnosed with “growing pains” and had recurrent hip pain as long as I can remember.. I saw massage therapist, physical therapist, acupuncturist chiropractors, nutritionist, counselors and medical doctors all before age 20.

I was diagnosed with … Disc disease. Sacroillitis. Fascet dysfunction. Bursitis. Herniated disc , Ruptured disc. Sciatica. Degenerative disc disease. Chronic fatigue. Depression. Had countless spinal epidural procedures including an EXTREMELY painful nerve ablation. I had a spinal fusion. Was then told I had post spinal fusion lumbagio.

I saw a pain/ spine specialist for nearly a decade! Not once in 16 plus years was I ever referred. I complained of severe fatigue since my teens and was told I was “anxious or depressed”. I exercised daily despite the pain. I earned a black belt in martial arts. I ran, did yoga and Pilates every day, lifted weights. I was athletic. As my symptoms progressed I Wore an si joint belt for years. I Worked full time. Went to graduate school. Adopted our first child. I pushed myself through the pain. I lived off Advil and I knew nothing but pain. That was the only reality I ever knew.

I had dreams ..so many dreams. Dreams to do more volunteer medical work abroad. Adopt and foster more children.
Decades passed. Decades of untreated disease progression.
But still not once was I referred to a rheumatologist.

I only knew something was very wrong when my disease began to spread to my peripheral joints. I lost strength and flexibility in my hands. I got Achilles tendinitis from entheses had trouble with my ribs and sternum flaring. Walking became increasingly difficult. Today, just day to day simple activities are a struggle. There is really not one joint that AS hasn’t attacked from my jaw to my ankles. Some days getting dressed is nearly impossible. I can’t tie shoes anymore or cross my legs. My body slowly and steadily began to fail me and my career was eventually not possible.

I had to apply for permanent disability. Its not a decision I took lightly. I went from an active, athletic, highly educated, highly driven life, despite my chronic severe pain to this. I lived off Advil and steroids and just thought that this was “normal”. And was not ONCE referred to a rheumatologist.

This disease has taken everything from me personally, professionally, spiritually and mentally. I am a mere shell of my original self. I struggle every single day to somehow come to peace and acceptance with this new reality. I grieve the old me more. I grieve all the dreams I had and that grief will never go away. I will never be “ok” with this reality. I will never fully accept this new me. I am not at peace with this and never will be.

For decades the medical community failed me and thousands of others like me. And I will never forget that. If only one medical provider somewhere along my journey of 16 plus years just said “wait this doesn’t make sense”what a different reality I may have had.

It is well known that early diagnosis and aggressive treatment is associated with the best prognosis. Conversely it is also known that the more joints affected the worse ones prognosis and more difficult it is to control.

Increased awareness means earlier diagnosis and increased funding for treatment and perhaps years from now a cure. If my story can help one person get diagnosed earlier then it is worth sharing.

8 Responses to “A.S. Face 2101: Mary Jo”

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

  2. oh dear one. how I wish we could turn back time and get the correct diagnosis earlier. You have been so courageous and shown such strength over the years. We love you always and forever….

  3. Mary Jo you are so brave and strong to use you pain to help others. We have discussed before how often the medical community fails in these cases especially with women – I so admire you for working to make others aware and save them from the struggles you have been forced to fight.

  4. Welcome to this AS community. So sorry for all your years of non diagnosis. Thank you for sharing your story.

  5. Thx for your story. It is the same story do many of us have lived. Raising awareness is crucial. It MUST be raised in the medical community ESPECIALLY primary care! Cookie is a huge part of that. My dear friend Michael Smith RIP was another. I wish you well.

  6. Welcome on board

  7. Welcome and thankyou for your story. I can relate to it like so many. I wish you the very best of care. Each individual story is so powerful and raising awareness a necessity. Love Trish

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