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I Have Sarcoidosis, But Sarcoidosis Doesn’t Have Me

With the start of each New Year, I am in planning mode. I am working to lock down a second Pride event for June and in doing so, it brought back a memory.

I was disappointed to have turned down several invitations to celebrate Capital Pride in Washington, D.C. That weekend of events and a grand parade in the Nation’s Capital was supposed to have been my grand entrance as a published author. But I was exhausted. I had just returned to Woodbridge, Virginia from a three-day trip to Chicago. Within those three days, I had signed and shipped pre-ordered copies of my novel, completed my very first book signing and had an infusion of the medicine I need to treat my autoimmune disease. The salesperson in me couldn't renege on those commitments, but then I paid the price.

As I laid on my mother’s sofa, a friend asked me to review a document for her. She was offended when I declined. “You aren’t doing nothing but laying around,” she said. I took that opportunity to tell her how she had hurt my feelings in the past with a similar comment.

“Perhaps you misunderstood me when I said that often I get confused due to a rare brain disorder.” I teared up before explaining further.

I have Sarcoidosis, which is an autoimmune disease. It is the growth of tiny collections of inflammatory cells in different parts of the body, most commonly the lungs, lymph nodes, eyes and skin. The late, great Bernie Mac died from complications of Sarcoidosis. The disease can impact any organ in your body. There is no known cure. Unfortunately, I am one of the three percent of those whose Sarcoidosis has spread to the brain. Neurosarcoidosis is the rarest form, in which inflammation occurs in the brain, spinal cord and other areas of the nervous system.

Prior to 2012, I had everything I ever dreamed of. I was in a loving relationship with a beautiful woman with whom I thought I would spend the rest of my life. I earned a MBA from Johns Hopkins University and I was working my way through the bureaucracy at Chicago Public Schools as an administrator. I flash back to my rheumatologist’s explanation of what a diagnosis of Sarcoidosis meant in layman’s terms. I remember how her words began to run together as she spoke of an indefinite number of infusions, like chemotherapy. She remained impassive as she stated that I would be on medication for the rest of my life. I tried not to cry as I asked her if there was a cure.

“There is no known cure,” the doctor explained, “but with long-term medication, the symptoms can be stabilized.”

Some of those symptoms have been frightening. For instance, I temporarily lost my vision. One day I was driving over the viaduct in downtown Chicago. I panicked as the street signs became blurry. Drivers blew their horns at me as I cried and fumbled for my phone. I called my then partner, panicked.

”Honey, I can’t see. I’m driving, and I don’t know if I can get home.”

Her words were calming as she told me to disregard the cars behind me and slowly drive toward the light. I made it home that day by following the lights of the cars in front of me. After several ophthalmology appointments, I remember feeling nauseated at the thought of having to get shots of prednisone in my eyes. I was scared as the ophthalmologist placed a numbing solution on a cotton ball, pulled my eyelid forward and inserted the cotton ball beneath. My heart raced as he pulled out a syringe. However, his bedside manner was comforting.

“You’re doing just fine Ms. Pickett. You won’t feel a thing.” My heart raced again as he inserted the syringe into my eye. I felt slight pressure, and just like that, it was over.

I had to go out on disability when the Neurosarcoidosis spread to my brain, and I temporarily lost my ability to walk. I fell into a deep depression as I fought the temptation to give up. The prednisone increased my weight to 200 pounds, and I was often disoriented. I felt as though I was in a fog. At that time in my life, I was blessed to have a partner who allowed me to focus on my health.

I exhausted all my savings as well as my short-term disability. As a result, my credit went down the drain. My request for assistance through the Veterans Administration was denied. How could this happen? I had served my country. I made the ultimate sacrifice of putting my life in danger as I provided care for my injured comrades as a medic in Operation Desert Storm. Letters to my state senator and congressman were of little help.

I had to learn the simplest things all over again. I felt like a child as I willed my legs to move in therapy. Why me? I thought. But, I was determined not to give up. When dealing with an autoimmune disease, something as simple as a cold or a urinary tract infection could bring about a relapse, which included such symptoms as severe vertigo. Flare-ups were so bad that I would start walking sideways and not even be aware of it. My partner grew to recognize the signs before I felt them.

I was slowly but surely regaining my ability to walk when I fell and broke my hip. The fall was so severe that my hip was fractured in two different places. I had just received a promotion at Chicago Public Schools when I had to call my director and inform her of my hip break.

The orthopedic surgeon smiled when, during my first weekly follow-up visit, I asked when I could go back to work. He said, “I was expecting that question from you.” I was amused when he stated that the only way I could go back to work within two weeks post-surgery was to use a walker or a cane. I laughed out loud. “A walker? Oh no, that is not sexy!” He smiled when I agreed to a cane.

I am an optimist. I have always looked at life’s trials and tribulations as the glass being half full versus half empty. I remember the twinkle in my partner’s eyes when I went into Walgreen’s and bought a leopard-print cane. I laughed, “if I gotta use a damned cane, I might as well be sexy!”

This is my ongoing health journey; after explaining it to my friend, I exhaled as she apologized for not knowing the severity of my health issues.

“You never really talk or complain about it. I’m sorry,” she said. “I had no idea. My father suffers from dementia, so I can only imagine what you are dealing with.”

As I accepted her apology, I realized that perhaps it’s a good thing that I often forget that I have Neurosarcoidosis. I eat healthily, I am a “beer girl” (but even that is minimal), and I work out four times per week. My rheumatologist said she wished all her patients were like me. She stated that although there is no cure, the medication is only fifty percent responsible for why I am in remission. The other fifty percent is how I take care of myself.

I remember my neurologist’s beaming smile when he said the tumors on my brain had stabilized and added that he was in awe of my progress.

I said, “One day I will die, but it won’t be from Sarcoidosis.”

Bishop TD Jakes once preached, “don’t let your pain distract you from the purpose that God has on your life.” I sobbed as his words gave me the strength to fight this disease, heal from a devastating divorce and write three novels. I found my new purpose.

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