Rescue from rare disease

I contracted a very rare bacterial infection and septic shock led to a life-threatening illness that ravaged my body and spine that almost took my life and I will not know if the infection is gone for a long while.   My life has been changed forever including the medical financial cost of 2 hospital stays, 2 surgeries, every physical therapy appointment, home nursing, blood tests, imaging, trips to doctors out of town, medications, renting hospital bed and other medical equipment, and the loss of my car loan.   

While trying to figure out how to tell my story it has been difficult for me to get up the nerve to ask for help but I am in a situation that requires new courage with humility as well as allowing myself to be open and vulnerable.

Until my illness I worked in healthcare.  I was doing what I loved helping patients after surgery or illness recover independence.  I work in occupational therapy and my favorite part of my job was helping people get back their confidence and to help build hope in their ability to navigate their recovery and get back to their lives.  I am now trying to hold hope for myself and live moment by moment to get back to my life and work.  What I did in my work for others I must now learn to give to myself.  I am still very sad and I am still working through grieving the loss of who I was.

In November I started to experience severe pain in my chest/rib cage area.  I went to my doctor and the ER repeatedly and they did not find what was wrong.  This went on for a month with continue increased pain meds and steroids to try and manage the pain.  Finally, blood tests were run and the bacterial infection discovered. I got a call at home one evening from a doctor and was told to get myself to the ER.  After many hours a complete CT scan discovered a large abscess next to my spine and discovered I was in septic shock, my blood full of this bacterium. 

I had surgery to remove the abscess, clean me out, and put in a drain tube.  My lung collapsed during surgery and I developed pneumonia. After 10 days I was discharged and I went home.  I was home for 4 days when I felt some changes in my back.  My neurosurgeon asked me to meet him at the ER in San Francisco to get an MRI.  He told me I needed to have spinal fusion surgery for 2 vertebrae that were obliterated.  The surgery would only be 2 hours, no worries.

When I woke up in my hospital room I was told I had 10 vertebrae fused, the surgery was 6 hours long and I has a transfusion during surgery.  I was devastated and in unbelievable pain, this was a very big surgery and a lot of hardware and disruption for my body to recover from.  I woke up to a different life on a very long road to recovery.  I was scared, my life and my work were very physical and I did not want to lose my career, identity.

After another week in the hospital I was discharged home.  I am on the long road to recovery.  I will not know if the bacteria are gone, I will have to learn to have hope and happiness with this uncertainty in my life as so many with sudden chronic illness or disease must learn to do. This disease has pointed me to change and hopefully growth in learning to trust, live in the moment, live with gratitude, and love myself, qualities I admired before but could not make real in my daily life.
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Maya Barrett
Santa Rosa, CA

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