Jill Ocone's Story

What were the steps leading up to your diagnosis?

I began experiencing terrible headaches, fatigue, and muscle/joint pain about 13 years ago, but I didn’t take the symptoms seriously.

As my symptoms became stronger, and with a family history of lupus, I knew it was time to see a doctor. I made my first appointment with my rheumatologist in the middle of 2006, who suspected lupus right from the get go.

After that visit, however, I put my health issues on the backburner because my brother-in-law was diagnosed with esophageal cancer. I made Michael and my family my first priority. Unfortunately, Michael’s fight was short-lived and we lost him in June 2007.

Life changed dramatically for everyone in my family when Michael died. I tried to help everyone else through their struggle while suppressing my own emotions and ignoring the signs my body was sending.

I wanted to believe the fatigue, headaches, pain, and loss of appetite in the months following Michael’s passing were nothing more than the way my body was reacting to this absolutely crappy hand dealt to us all by life.

Looking back now, I see how much I was in denial of my own health situation because I was afraid to face the truth after what we had all just gone through with Michael. If he were around, though, he would have slapped me for thinking that way and then driven me to the doctor himself.

My symptoms spiraled out of control and before I knew it, I lost 40 pounds with the fatigue, headaches, and pain too much to bear.

I returned to my rheumatologist in the fall of 2008. Even though my ANA test did not turn positive for another two years, I was officially diagnosed with lupus at that time.

Since my diagnosis, I’ve experienced a whole gamut of symptoms, including extreme fatigue, join/muscle pain (especially in my legs and hips), headaches every day, the quintessential lupus butterfly rash, hot flashes, minor hair loss, noise and light sensitivity, and fevers.

Who has been there for you? How?

My husband has been my rock and I don’t know how I’d get by without him. One of my favorite sounds is laughter coming from my niece and nephews, and I don’t think they know how much their laughter keeps me going on my most difficult days.

I am grateful for the unending support of my family and friends who accept me as I am without judgment or assumptions. My co-teachers, colleagues, supervisors, and students usually know I’m having a bad day simply by the look on my face. Their compassion and empathy can be the difference in making it through the day.

What lifestyle changes have you needed to make?

I listen to my body and acknowledge my limits. I also try to eat a balanced diet and to be active as much as my body will allow.

I strive to meet the demands of my career as an educator as best as I can without using my diagnosis as an excuse.

I arrive at school very early in order to complete whatever professional responsibilities are on my list for the day (i.e. lesson planning, grading, preparation, communications) while my brain is alert and active. I have learned to keep stress at bay since it is one of my biggest triggers.

Since my diagnosis, I have had to scale back a lot of hobbies and activities. My brain usually shuts down around 4 p.m., with exhaustion and fatigue overtaking me sometimes before dusk.

As such, I rarely am able to enjoy nighttime activities for work or for fun without planning ahead and scheduling time to rest afterwards. The same goes for travel, day trips, and any strenuous work such as mowing the lawn or raking leaves.

I write in the morning hours whenever possible because of that daily mid-afternoon wall I hit which blocks my creativity and my cognition.

What accomplishment are you proud of?

I am very proud of being named Teacher of the Year at my school for 2015, as well as my work to recognize and honor local veterans. Over the past three years, I was honored by two local VFW posts as a result of my work. I’m also proud of my writing, which appears regularly in Jersey Shore Magazine and other outlets.

What's your advice to someone else living with Lupus?

Put YOURSELF first. You know what you’ve got to do to get through the day, so don’t compromise your reality or peace of mind by putting someone else’s to-do list or aspirations before your health. It’s okay to say NO.

Acknowledge that there will be bad days, no matter how positive you try to be. The day I started acknowledging the bad along with the good, instead of hiding the bad, was the day I was truly liberated.

My mantra lately is “my purpose is stronger than my pain.” On a bad day, I take a meditative-like pause to bring me back to center; and if all else fails, I know tomorrow is a fresh start.

I keep a daily journal where I list what I'm thankful for and the best part of each day; journaling helps me focus on the good things in my life no matter how awful the day was or how defeated I might feel.

Is there anything else we should know?

I am a 46-year-old writer and educator (high school journalism and British literature). I am an awesome auntie to my niece and nephews and love spending time with family and friends. I also enjoy seeing new places and searching for sea glass and seashells on the beach.

I survived West Nile Virus (encephalitis/meningitis) in September of 2012. Ironically, what saved my life was that I was actively taking prednisone, the medication that I hated because it caused me to gain weight.

The prednisone kept my fever from going any higher than 106.8 degrees. Only 48 people in New Jersey came down with West Nile Virus in 2012, with six of them fatal; out of the nine in my county, I was the fourth one diagnosed. I also have fibromyalgia and can type wicked fast.