My Journey into Lupus

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My Journey into Lupus

Perhaps it’s the systemic Lupus.

Perhaps it’s my mind.

Perhaps I’m uniquely my mother’s child.

These were the questions that plagued my mind. For many years, I knew something was not right. One moment, I had perfect recall, and in the next, I had no recollection of an event. Today, some of my questions have been answered, while others may never be.

This is my journey into Lupus.

I am a complicated genetic mess. My mother, born in Belize, has light skin and green eyes, giving her a Quasi-Caucasian appearance. Her rounded bone features, however, are traditionally associated with Native Americans.

Her actual genetic makeup is Scottish, South Pacific Islander and black. My dad, on the other hand, has brown skin and sharp features, due to his black and Scottish mixture.

While I was growing up, I never placed any significance on the composition of my genetics. Recently, it has become medically relevant.

Though I physically look black, I carry the celiac genes. Celiac is prevalent among European, but not generally seen in people of color. Individuals with this condition cannot process the protein in wheat, oats, rye and barley.

I believe having inherited a gene associated with that autoimmune disease predisposed me to other auto-immune diseases. I have Hashimoto Thyroiditis along with Systemic Lupus and digestive issues.

Due to my hodgepodge ancestry, in Belize, I am simply labeled Creole. In Belize, all individuals of mixed race are labeled Creole.

I lived as a Creole in Belize, which was formerly British Honduras, until the age of eighteen. I migrated to New York City the very same year and a few months before Belize got independence from England.

Prior to gaining Independence, September 10th was a national holiday, and the most celebrated one in Belize. The normally scanty, narrow streets of Belize City would over flow with onlookers. Most Belizeans participated in the celebration either as a participant or as a spectator. I attended every September 10th celebration while living there. However, I can only graphically recall two. During one, I was merely a toddler, and it was the only time, to my recollection, that my dad had taken me. In the other, I was twelve years old and I had gone alone. While I know that I attended others, they are all a blur to me.

When I searched my mind for the precise moment when my Lupus symptoms began, September 10th 1979 kept coming to mind.

I remember standing in the blazing hot sun on a crowded street. There was no overhang from any buildings where I stood. The sun’s deadly rays were beating down on me as though I was standing in a furnace. I became excessively thirsty. Pretty soon, I had an excruciating headache followed by feeling as if I was suffering from severe allergies.

Though I was surrounded by hundreds of bodies, I did not recognize a single face. I didn’t have any money to purchase a drink. There were no first aid stations where I could get a drink of water to quench my thirst. I felt parched and a little agitated while sandwiched in the middle of other hot sweaty people.

I tried to push into the crowd to get away from the direct sunlight. A deepening sense of nausea lessened my awareness. I cannot even now say if I stayed for the parade that day or for how long I stood in the sun. I staggered home as though I had consumed more alcohol than the most inebriated drunk.

My body temperature continued to climb, and the next day, my mother took me to the doctor. I was diagnosed with a sun stroke. In subsequent years, I’ve had that diagnosis several times.

One month after being first diagnosed with a sun stroke, I became jaundice and was misdiagnosed with liver failure. Later, the diagnoses were corrected to hepatitis A after learning that there were a few other people living in Belize City were diagnosed with hepatitis A. I was twelve years old and mainly ate at home. I did not eat from any food vendors, and I didn’t drink public water. We used public water to bathe, but mainly drank water from a private water source.

At that time, I blamed my father for my contracting hepatitis. Every night after supper he gave us liquid B complex. I vividly recall that it was in a homemade jar and that the cover was rusted. He purchased it from a local compound pharmacy. It was the worst tasting concoction ever. I’d clench my teeth very tightly so he couldn’t put it in my mouth. He then threatened me with a whipping so I started taking it unwillingly. That was a ritual until one night I started vomiting right after getting my very last dose. A day or two later I became jaundice.

My illness could not come at a worse time; I was in eighth grade and in my last year of elementary school. In Belize, students have comprehensive exams and scholarship exams after elementary school which allow them to attend private schools. I knew I was intelligent and had my hopes set on getting a scholarship. My desire was to attend the best high school in Belize.

However, due to my exhaustive and consecutive illnesses, I was out of school for what seemed like months. I was disheartened. In Belize, one had to be 12 years or younger to be allowed to take the high school scholarship exam. I was right at the cut off age.

My elementary school teacher at the time, Ms. Gloria Edwards, wanted to help; she asked my parents if she could tutor me at home. They gave their permission. I recall that she came by once but concluded that I was having difficulty focusing and probably needed more time to recover. I was out of school for months before I was medically cleared to return.

Upon my return, Ms. Edwards said that because I had missed a large part of the school year, she did not think I would be academically ready to take the comprehensive exams.

In my mind, I thought it unfair and chose to study diligently in order to do well. I took the comprehensive exams and got the 7th highest score in her class. With that, I was allowed to take the scholarship exam.

Still, I knew that something was not quite right, but I did not want to give anyone any reason or an excuse to rob me of the opportunity of taking that scholarship exam, so I chose to not say anything. I continuously struggled with exhaustion and not having enough energy. This caused irritability and affected my ability to focus. All I could do was hope I was well prepared.

After the first part of the scholarship exams, I felt fairly confident. However, I felt as if I didn’t perform as well in the afternoon session. We had a mid-day break for lunch and I walked from the testing site to my home across town and back. It was about a twenty minutes’ walk in each direction. I was exhausted, and I could not maintain focus in the afternoon session. The sun is like kryptonite to a person who has lupus and while I lived in Belize, I didn’t not connect my symptoms to high intensity sun exposure. All I knew was that once my energy was depleted, that I was as good as Sleeping Beauty. The simplest of tasks then becomes extremely complicated for me.

I did not qualify for the scholarship and attended public high school as opposed to the private one I wanted.

As I aged, I continued to struggle with my health. In my first year of working as a nurse, I struggled with exhaustion and inability to concentrate plagued me my entire career. At the start of my career, I felt that it was from not being used to working very long hours or maybe it was because I was being exposed to an array of viruses. At times on my lunch break I would go and sit in the courtyard. I thought that if I spent a few minutes in the sun that it would energize me. Whatever I tried to do to re-energize myself, I couldn't. There were several ultraviolet light in the emergency room and people with Lupus is photosensitive and ultraviolet lighting causes Lupus flare ups.

I continued to be plagued with extreme exhaustion, irritability, and difficulty coping and had no idea what was causing my issues but that was what pushed me at age 50 to find answers. I had been evaluated in my 30’s but that produce inconclusive medical answers. Despite the evasive medical conclusions, I needed to know the cause of my symptoms – nonspecific aches, forgetfulness, inability to complete familiar tasks, and generally not feeling well.

In retrospect, I think since my first episode of sun stroke in 1979, my symptoms never fully abated, and often return in waves. There were times when I was more symptomatic, and other times when I was not.

I now realize the impact Lupus had on me and my ability to perform, and after many years of going without treatment, the effects are apparent.

I have days when I can’t read, and struggle to express myself. My once even toned face is now discolored from a Lupus rash.

It feels as if I’m at the end of my journey. I now have answers, but for my doctors, I’ve only just started. This diagnosis was only recently added to my medical chart. I’m now on medication. I now know to wear long sleeves and sunscreen when out in the sun. I recognize that prolonged sun exposure triggers my symptoms. Many times, I was left feeling as if I was a hypochondriac and as though my struggles were psychological as opposed to related to a medical condition. My hope is that my journey into Lupus would give clarity to someone who may be suffering silently the way I was.

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Ruth Andrews Garnes
Ruth Andrews Garnes is a registered nurse, a passionate poetic writer and lyricists.
See all posts by Ruth Andrews Garnes