The internet can be a place for chronic migraine patients to share in each other’s joys or to vent about their daily struggles. We all need a safe space to find support when so many of us don’t have people in our lives who take the time to truly understand our pain. At times, it can be overwhelming to see so many struggling in their journey.
Jeannette Rotondi cuts through the negativity by creating beautiful graphics coupled with inspiring quotes. She gives us all a gentle reminder that each of us is strong enough to persevere through chronic illness.
The Complex Beginnings of Migraine
Jeannette’s health began to deteriorate in 2007. Her journey has included misdiagnoses, six surgeries, discovery of several co-morbidities, bouts of severe depression, loss of career, putting off having a family, and even enduring “invasive thoughts of escaping the physical pain.”
Yet you’d never know the physical and emotional pain she has conquered. Jeannette has created a fulfilling life out of the bad hand she has been dealt. She had a different life plan in mind, but her resilience has shifted her priorities and given her joy back.
Jeannette married the love of her life in 2003. A few years later she earned a master’s degree in social work. She was excited about her new career and the possibility of starting a family in their new house.
Around the time Jeannette turned 30, she experienced stroke-like symptoms without warning. Excruciating pain suddenly hit the left side of her face and neck. She had bouts of aphasia (difficulty speaking), temporary paralysis, facial weakness, and sensitivity to light and sound. Doctors originally diagnosed Jeannette with partial seizure disorder and later cervical dystonia, a disorder that affects the neck muscles and causes involuntary contractions.
Eventually, she was referred to a headache specialist who realized her episodes were actually chronic migraine headache. Additionally, Jeannette was experiencing cervicogenic headache and pain in her jaw caused by temporomandibular joint dysfunction (TMJ). She was experiencing three separate types of headache, stemming from three different sources—and the result was constant pain.
Further testing revealed that Jeannette had spinal stenosis, facet joint arthritis, disc degeneration, and TMJ. She recently received a new diagnosis of Ehlers-Danlos Syndrome (EDS) – Hypermobility Type. Joint dislocations, bruising, hyperextensibility, muscle spasms, and neuropathic pain are common with this disease. She now knows EDS was the cause of her cervicogenic headaches and TMJ. It also limits her use of anti-inflammatory meds.
The combination of these disorders contributes to her painful headaches. All aspects of Jeannette’s future were put on hold to focus on her health.
Trial and Error
Receiving an accurate diagnosis was a blessing and a curse. Jeannette’s headache specialist now had multiple medications and therapies that could help reduce her pain. Unfortunately, each person responds differently, making a quick fix almost impossible.
To address her cervicogenic issues, Jeannette underwent a spinal fusion, a lumbar discectomy, and shoulder surgery. These invasive surgeries were unsuccessful in reversing nerve damage. Jeannette continues to have debilitating back and leg pain.
Jeannette was prescribed a multitude of preventive and abortive medications, trying to find the right combination that would provide her some relief. She was interested in trying Botox to help prevent and manage her chronic migraine condition. However, her insurance required that she try and fail multiple medications before it would approve the quarterly treatment. This is a practice known as “step therapy” in the health care industry, and it can rob patients of months or years before they get access to proven therapies. (In advocacy circles, it is often referred to as “fail first” because the patient must fail other medications before receiving the one originally prescribed.)
Life-changing Reduction in Pain
Jeannette was eventually approved for Botox. She says it is one of the most effective treatments in her toolbox. Previous medications that had stopped working now gave her relief. Botox therapy for migraine is injected in 31 different sites around the forehead, temples, occipital nerve near the base of the skull, hairline, and occasionally in the jaw muscle and shoulders (if these areas contribute to pain).
Food and Drug Administration (FDA) guidelines allow for a round of injections every 12 weeks. Botox has a life cycle of its own and may not work immediately. Some who have been receiving Botox for years find that it takes a few weeks to start working and can wear off before the next set of injections is scheduled.
Jeannette recently found a more profound treatment. Her doctor suggested a trial of a spinal cord stimulator, which dramatically decreased her pain level. The use of stimulators is a growing trend in the area of migraine as well as other chronic pain conditions. An electric impulse disrupts the inflamed nerves causing pain. In September 2016, Jeannette had a spinal cord stimulator permanently implanted. While it has not completely rid her of pain, Jeannette is happy to report that her daily pain is significantly reduced. Her migraine attacks have decreased from 15 per month to an average of nine—a life-changing achievement.
Bundle of Joy
Prior to the spinal cord stimulator, eight years had passed since the start of Jeannette’s life-changing health issues. During that time, she never forgot about her dream of having a child. She and her husband explored the option with her doctor, who discouraged her from conceiving, explaining that her body would not be able to handle the stress of a pregnancy.
She searched for a second opinion, not ready to give up. During this search, Jeannette found out she was pregnant. During her pregnancy, Jeannette enjoyed a respite from chronic migraine, although it returned after the birth of her son. However, she was forced to come off all of her medications for the baby’s safety, and the withdrawal symptoms, coupled with the additional stress pregnancy had placed on her delicate spine, made it an extremely difficult and painful process.
She silently worried about her abilities to be a good parent. “I feared that people would not understand that although I was struggling with increasing pain and trying to cope, I was also very grateful,” she says. Her son, D.J., was born on Jeannette’s birthday in 2015.
Advocacy in Action
Since 2015, Jeannette has volunteered with Chronic Migraine Awareness, Inc (CMA). She is the director of graphics and administrator for their Facebook support group, which has over 11,000 members. CMA’s mission is to support, encourage, and educate migraine patients and their families to reduce the stigma attached to the disease.
Jeannette is also a U.S. Pain Foundation Pain Ambassador, and was once named Ambassador of the Month. Through this program, her mission is to educate others about the chronic pain conditions she faces as well as offer support for those in a similar position. She has hosted two fundraisers selling Alex and Ani bracelets through the company’s philanthropic efforts. Both events raised not only funds, but also awareness through displays of previous INvisible Project stories.
Jeannette’s compassion doesn’t end with connecting to those in physical pain. After a family member experienced a stillbirth, she felt compelled to get involved in an organization called Love You For Always Angel Gowns. This group takes donated wedding and formal gowns and transforms them into “angel gowns” that are then donated to families who have experienced pregnancy or infant loss. They’re used for burial or during the last precious moments of the baby’s life.
Words of Wisdom
Jeannette’s optimism is infectious. She defines herself as a wife, mother, daughter, and pain warrior. It has taken years to settle in to her “new normal.” Through this journey, she has come to a place of acceptance, not resignation.
“There’s a difference between resignation and acceptance,” she explains. Resignation is passive; acceptance fuels action. Everyone will go through a grieving process, which is not always linear. You can have a setback and go through the mental grieving process all over again, but hopefully after a few times, you’ll have better coping skills to work through it. Jeannette has found joy in acceptance.
Love You For Always Angel Gowns: facebook.com/LoveYouForAlwaysAngelGowns
Chronic Migraine Awareness: facebook.com/ChronicMigraineAwareness