My name is Jeannette Rotondi. My journey with chronic illness began in 2007 just before my 30th birthday. I had completed my Masters in Social Work, while working in a community outpatient mental health program and had passed all my licensing exams.
In 2003, I married the love of my life and very supportive husband and we were discussing starting a family. Life was good and flourishing: new careers, first home, and planning a family.
Then, life changed when my health suddenly took a turn, beginning with experiencing pain on the left side of my head, neck, face, and jaw as well as stroke- and seizure-like activity and spasms. I was misdiagnosed with a partial seizure disorder and then cervical dystonia, to explain the neurological and stroke-like symptoms such as aphasia, paresthesia, unresponsiveness, and facial weakness. I continued to have these symptoms, as well as light and sound sensitivity, nausea, vomiting and debilitating pain.
Finally, I was referred to a neurologist who was also a headache specialist.
I was diagnosed with chronic migraine disease—a condition in which the patient must suffer 15 or more attacks a month—as well as cervicogenic headaches. Cervicogenic headaches were arising from issues in my cervical spine. Through further testing I was found to have nerve damage due to spinal stenosis, facet joint arthritis and disc degeneration, as well as TMJ. Treatment consisted of trials with preventive and abortive medications for chronic migraine, as well as facet joint blocks, epidurals, and nerve ablations for the spine.
In 2011, I was finally approved for a spinal fusion. Unfortunately, by then, the nerve damage was permanent. Gradually, the joint and spinal issues progressed to impact the lumbar spine and other joints throughout my body, leading to more extensive treatment and three more surgeries: two shoulder in addition to a lumbar discectomy. Again, surgery was performed too late to reverse the nerve damage, which continues today. I had many days of horrible back and leg pain. I underwent an implantation of a spinal cord stimulator in 2016, which has helped. The next month I was diagnosed with a genetic, connective tissue disorder, Ehlers Danlos Syndrome.
During these years, one of my childhood disorders, called colonic inertia (a type of colon dysmotility), had progressed and my previous treatment approach was no longer effective. I had a rectal prolapse and underwent a search for new treatment, eventually undergoing a partial colectomy. A month later my father died suddenly, one of my greatest supports and source of strength.
I persevered, searching for effective treatment to reduce the severity and frequency of the migraine attacks that still occurred at least 15 days a month. I had tried many medications, none of which offered any relief. The symptoms and pain were immobilizing to the point that I was disengaged from life, restricted to dark and quiet rooms. During this time, I lost friends and my career, and withdrew from family. Plans to start a family were put on hold for eight years while I sought better treatment. At times, feelings of grief, loss, guilt, and frustration became overwhelming, along with intrusive thoughts of escaping the physical pain.
Fortunately, due to coping skills developed in treatment many years earlier, faith in God, the support of my mother and husband, and professional training, these thoughts were not acted upon. Treatment continued in efforts to find my best quality of life and level of functioning and I developed a new normal with the acceptance that there was no cure. I strived to live, not just exist, with chronic pain.
In 2013, I stumbled across a non-profit organization called the U.S. Pain Foundation, I became an ambassador with the hopes of finding a place to help others with chronic pain and illness. In 2015 I also began volunteering with another non-profit called Chronic Migraine Awareness, Inc. and then The Migraine Mantras. Finally, in 2016 I began my own nonprofit, Love You For Always Angel Gowns, that repurposes formal gowns into infant angel gowns and donated to area hospitals for families who have experienced a Stillbirth, SIDS or Infant Loss.
After all other means of treatment were exhausted, I was finally approved to try Botox as a treatment for chronic migraine. In combination with occipital nerve blocks, it has helped me improve. The abortive medication works more efficiently, symptom severity and pain have decreased during attacks, and the frequency of attacks have decreased somewhat. This is was a huge triumph for me. Today, I still have severe attacks that leave me unable to function at all, but they are no longer 15 or more times per month.
My husband and I began to revisit thoughts of including a child in our family. None of my doctors or maternal fetal medicine specialists supported my plans for pregnancy, based on my health. It was a difficult and emotional journey, but my beautiful and healthy son was delivered naturally on April 20th, my own birthday.
I have made strides on my journey through the stages of grief that accompany chronic pain. I have sought to accept my new normal, living life with ever-present pain. I have developed practical strategies for functioning with chronic pain in order to care for myself and son.
Chronic pain has taught me so many lessons. It has taught me to find joy in the simple things and fight to see that joy even when pain is pervasive. It has taught me to be more creative and strategic to overcome obstacles. It has strengthened my own level of compassion for others. Ultimately, it has helped me stop rushing through life’s precious moments.