Patient Blogs | Lupus
Lemons, Lupus, and the Paradox of Lemonade

It’s a quirky conversational question: “So, you make lemonade?” Seems pretty innocuous, right?  I can’t help but smile, it eases me into my puzzling ordeal with lupus. In order to talk about the lemonade, we’ll need to moonwalk back to the origin story of a particular lemon called systemic lupus erythematosus (SLE).

It was a brisk fall day with all the markings of winter. I remember it well because the Christmas tree just went up in Rockefeller Center. I struggled to get up that morning, deliberating about work. The chilling weather was affecting my mood, joints, and very fickle sleep pattern.  Yet, I pressed, how we so often do when our body is clearly blaring a warning sign.

My morning routine felt far from it; it was laborious. After what seemed hours, I drove to the express bus, fell asleep during the ride. I overshot my stop upon entering the city.  Due to the tree lighting event, traffic was horrendous in midtown, so I skipped the cab and took the subway. If you’ve ever ventured into the New York City MTA station, there are a few constant themes: the smell that smacks your nostrils, the array of characters on the on the platform, and the sounds. It's classic NYC.

That day, the competing themes overwhelmed me as I pensively descended down the stairs. I boarded the train, just praying to make it three stops. I woke to the announcement, “Passengers we are delayed due to a sick passenger.” I was greeted by the looks that said “Are yuh freakin kiddin me?” My head was spinning, I felt flushed, and it occurred to me the train was not moving. I was the sick passenger! There I was, laid out as if the F train won in the opening round. It was a reckoning moment: I really was sick, deteriorating, but I already knew that. I was just unable to convince the doctors to agree with me.

This episode was one of many disconcerting, but revealing events over 2 years. Being wheeled off the train by EMTs was a rock bottom, but it catapulted me to stay curious about my failing body. I was becoming a regular patron of NYC’s emergency rooms.  I knew what specific ER, borough, and best times to “check-in.” I fashioned myself an ER savant, even though I didn’t leave a happy customer.

After many misdiagnoses and unsuccessful treatments, I became increasingly recluse. Not only did I look like death warmed over, but I felt like it as well. I made excuses to skip family events, avoid co-workers, or carry out my Sex and the City life. Oh yeah, did I mention I was recently engaged and planning our wedding? I tried to avoid my fiancé too!  To the untrained eye, one would assume I wasn’t tending to my health, but I was a hot mess. 

In frustration, I scribbled in my journal. My handwriting was barely legible at this point. Here’s the entry before the consult leading up to my diagnosis:

“I officially feel like the bottom is falling out. This week I lost a thick patch of hair in the front of my head! I’m speaking with a lisp, and it hurts to talk. How can I recruit? The doctors have yet to figure what’s up. I’m sleeping all the time and still not rested. From derm to hematologist, nada. Living in the capital of the world isn’t an advantage. Everyone thinks it’s in my head. I go to sleep one way, then wake up like Fiona from Shrek! Am I dying? I must be. I wanna scream, but it feels like my lungs are filling up with water. Lord, I need you. You’re supposed to be near to the broken hearted. Welp I’m broken and drowning, I need a ‘walk on water’ kind of saving…

"Don’t forget to discuss these symptoms and diagnoses thus far: Persistent fevers over 100°, chills, extreme & chronic fatigue, shortness of breath, mouth sores/bloody gums, drastic weight loss (from 125lbs-100lbs w/in 3 months), bruising easily, nasty rash in ears and nose that also get infected - derm has been treating my eczema over 30yrs, seems more aggressive. Frequent conjunctivitis, dizziness, fogginess, anemia, pneumonia, bronchitis, constant UTI’s, gastro issues like nausea, abdominal cramping, constipation, and a questionable new nut allergy. My skin was tender to the touch, my nerves, muscles, and joints hurt all over, no pain reliever lasts. Bending, opening a jar, turning the steering wheel, or putting on my shoes are dreadful. I’m a fine-tuned athlete, but working out feels like I’m having a stroke or asthma attack. My body is swollen and disfigured. The wrist, shoulder, hip or lower back pain, have been attributed to old sports injures from dance, track or being a softball catcher! Serenity now!”

On an oppressively hot day in July of 2010, I heard three words that would inevitably change the trajectory of my life: "YOU HAVE LUPUS.” I remember sitting on the examination table, legs dangling and going numb. I was just a few short months from my wedding, the euphoria of it all hung in the balance. Everything explained by my doctor seemed garbled, Charlie Brown-like: "Womp, womp, womp.”

The clinical diagnosis was systemic lupus erythematosus (SLE). She continued with terms like “autoimmune disease,” “no cure,” “chronic illness,” and “potentially fatal.” The diagnosis was gut-wrenching and bittersweet. While it substantiated almost 2 years of misdiagnoses, numerous sick days from work, ER visits, morphing into Fiona, etc., it also brought its own trauma and uncertainty. It occurred to me that I was not only physically tired, but tired of being conditioned to be a strong black woman.

I was weathered from “showing up,” being dismissed, minimized, and diminished by the health care system and the system, period! I was actually told in an ER visit that “you Blacks and Caribbean people are strong; you take a licking and keep on ticking.” Spoiler Alert: Patients don’t show up with just their undiagnosed or diagnosed ailment. Many of us arrive to our chronic illnesses already burdened with the weight of our past, the imprint of performing in a predominantly white cis male gender world, the burden of societal stigma, and whatever other adverse lemons life has unloaded.

In this blog, I invite you on my journey of intentionally making lemonade with lupus and all my lemons. You’ll join me in the tears, defeat, abandonment, shame, hurt, etc. … But we won’t stop there, we’ll explore finding drops of joy, recalibrating the mind and body, being an ally, and how the dichotomy of lupus also pushed me to my purpose and closer to faith. We’ll do this together. We’ll find a way to live abundantly with lupus, and hopefully cause a ripple effect.

 

 

Photo Credit: JGI/Jamie Grill / Tetra Images via Getty Images

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Monique Gore-Massy

Monique Gore-Massy

Diagnosed in 2010

Monique Gore-Massy is a global and national lupus advocate with organizations like the Lupus Foundation of America and American College of Rheumatology. Her journey from patient to advocate comes from empathy, faith, and a curiosity to edify others. She collaborates with stakeholders on research and quality initiatives, lupus awareness, and improving outcomes while advising on equitably embedding patient centricity in care. She strives to stir up hope so all patients can be found “in the room where it happens.” She is Mr. Chip’s pawrent, Alvin’s wife, and a minister. Link with her here.

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