This painting is a self-portrait of my adaptation to life with arachnoiditis.
I was a healthy, active, productive member of my community. I was a teacher, youth advocate, and artist. I have been a single parent of three amazing children since 1994.
In March 2007, at the age of 37, I had a routine right knee arthroscopy to correct an established work-related injury. During this procedure I was given spinal anesthesia which contained 5% lidocaine, w/dextrose and epinephrine (xylocaine). My knee healed well.
In the weeks that followed the procedure, my coordination and balance began to deteriorate. I began having excruciating pain in both ears. I could hear everything. I had persistent nausea and developed perpetual positional headaches.
These headaches were relieved only when hanging upside down over the side of my bed. I had to lie down on my office floor to continue my work obligations. I managed to do this through the summer months but eventually was forced to take a medical leave of absence.
The left side of my face and body began to go numb. My left leg would give out unexpectedly. Sometimes I couldn’t tell if my foot was touching the ground. Other times it felt like I was walking on thistles in my bare feet. While sitting at my desk it felt like my leg was lying in a puddle of ice water.
I was diagnosed with gastro paresis of unknown origin. I developed painful muscle spasms in my extremities. Painful spasms around my shoulder blades restricted the range of motion in my arms. At night I would wake up be unable to move them at all. I developed persistent pelvic pain, abdominal pain, and constant pain through my left ribcage.
By November of 2007, I could not walk from my front door to my car without assistance. Too much time in a vertical position resulted in bowel and bladder dysfunction. The crippling headaches induced vomiting. My legs would not hold me up. I developed sacroiliitis/sacroiliac joint dysfunction. This causes pain and inflammation in the back of the hip joints and pinches the sciatic nerve.
I lost my job. I could no longer maintain my three story house or take care of our beloved epileptic golden retriever, Lily. We could not find anyone else willing to take on that responsibility. She had to be put down.
I was physically unable to stop the neighbor’s rescued Rottweiler from tormenting my daughter on the way home from school when it got loose. I was unable to stop those dogs from killing our cat, Sophie. My children were finishing high school and I missed out on the majority of that process.
Local practitioners were unable to solve the mystery of my symptoms. Finally, in 2010, I received a conclusive diagnosis. The specialist told me that I had spinal adhesive arachnoiditis in the lumbar and thoracic spine. My early symptoms were apparently caused by effects similar to chemical meningitis.
The anesthesia used in my procedure was not FDA approved for spinal use. It left significant nerve damage and scarring in the thoracic and lumbar region of my spine. This scarring had obstructed the rotation of cerebrospinal fluid. It was pooling in my lumbar region and thoracic region. It had formed a pseudo cyst which was displacing the spinal cord in the thoracic region (in between my shoulder blades).
There was not enough fluid around my brain. This had caused significant bilateral trauma to the nerves in my ears.
There was scarring in the tip of my spinal cord from a needle that had penetrated the conus. Spinal anesthesia is NOT guided by fluoroscopy. I was told that there is no cure for this condition. Subsequent diagnostic procedures, including spinal tap, epidural blood patch, and radionuclide cistern gram have added to this injury to my spinal nerves, spinal cord, and central nervous system. My body now interprets cold as pain. I was informed that there is no cure for this condition.
The specialist deemed me permanently disabled. Vocational Rehabilitation determined that I was unemployable. For the rest of my life I will have to lie down every three hours to control spinal fluid levels. I use an inversion table every day. Opiates do NOT relieve the nerve pain that I experience.
My children and I relocated to a much smaller, single story, home about two miles from the pain management clinic. Accommodations learned there permitted me to regain some range of motion and some strength in my lower extremities.
Time management has become a crucial part of my adaptation to life with arachnoiditis. Art and horizontal time spent with my infant grandson healed my heart and mind. Being honest, every hope and every gain is tainted by the knowledge that it will be accompanied by pain, ALWAYS.
I am currently working with vocational rehabilitation to meet my self-employment goals in my live/work studio space.
This art a courtesy of PainExhibit.org, an online educational, visual arts exhibit from artists with chronic pain who use art to express some facet of the pain experience.
The Pain Exhibit’s mission is to educate healthcare providers and the public about chronic pain through art, and to give voice to the many who suffer in silence.