My story on lupus and how it affects my life

While the autoimmune disease has been around for years, there are still people who have never heard of lupus.

The Story on Lupus

It is estimated about 80 percent of the general public knows little to nothing about the disease.

The purpose of Lupus Awareness Month is to raise awareness and educate others about lupus.

Celebrities like Nick Cannon and Toni Braxton have brought more light to the debilitating disease, but more awareness needs to be made.

Did you know every half-hour someone is diagnosed with lupus and women of color are 2-3 times more likely to develop the disease?

While anyone can get lupus, African Americans, Asians, Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians.

My Mother’s Lupus Story

First, why the talk on lupus? The conversation on lupus is near and dear to us here at Unheard Voices. It has impacted my family for over 30 years.

My mother had lupus and I never knew she was suffering from the disease until her last days on earth.

My mother was a strong person. For the 14 years I’ve had the pleasure of her being in my life, she never let my brother and I know she was suffering from this debilitating disease.

She, as much as possible, wanted to remain normal despite the illness she faced.

Though we seen the hip replacement surgery, the heart surgery, the struggling days, and when she could no longer work, we still never put two and two together.

We knew mommy didn’t always feel her best, but yet, she remained resilient so I always thought she would be okay.

As the oldest, I did start to worry and was starting to become convinced that my mother was not just “ill” sometimes.

It was in March of 2000, when my mother suffered a massive stroke, that I knew she was more than just “sick” sometimes.

Days after my mother had the stroke, my father sat me down in my room and told me she had lupus.

Unaware of what the disease was, I remember instantly becoming depressed, worried, and concerned.

Not only because of the massive stroke my mother just endured and now is fighting for her life, but the days that would be ahead for us and for her.

I didn’t realize that for twenty years of her life, she was already fighting. And this massive stroke that we’ve witnessed, was just part of another battle of her lupus and the biggest battle she would face.

When my father left to go back to the hospital to check on my mother, I went online to find out exactly what lupus is.

I was hesitant and nervous. I was nervous because I wasn’t sure what I was about to read. But I was curious and wanted to be self-informed on what my mother was suffering from.

I typed the word lupus into the browser’s search. I braced myself for whatever I was about to read and hoped that my 14-year-old self could handle it.

Forms of Lupus

I found that lupus is an autoimmune disease in mainly two forms : SLE and Discoid. Discoid lupus affects the skin and causes rashes typically in the face, neck, and scalp.

SLE short for Systemic Lupus Erythematosus is the most common form of lupus and the most serious affecting your vital organs.

SLE can affect many parts of a person’s body, including kidneys, heart, lungs, brain, blood and skin. Symptoms tend to vary among patients and can change often and suddenly.

There is no cure for lupus, and patients are typically put on a steroid or steriod-like drugs to help control the disease and the inflammation it causes to limit the patient from having flare-ups.

Flare Ups

A flare up are periods of times when you are experiencing the symptoms of lupus.

They can happen unexpectedly and suddenly without a warning.

You can be fine one day, and wake up extremely sick the next. There is no way to predict when the flare-up will occur, how bad it will be, or how long it will last.

When your symptoms are under control, the disease typically is in remission.

My mother suffered from SLE. After doing research, I began to understand why this disease was so debilitating on her body.

Lupus can affect any major organ. Normally, your doctor will test your kidney function as kidney problems is common among lupus patients.

My mother’s lupus affected her heart and circulatory system. While my mother was only 41 years young and ate healthy, because of the lupus, she suffered from P.A.D. and cardiovascular disease. These factors made her body and heart operate like she was 90 years old.

The cardiovascular disease caused my mother to have 5 blockages in her body. She found out after having a mild heart attack at work as an accountant. She had quadrupedal bypass surgery, because doctors could only safely get to four of the blockages. As a result, my mother could no longer work and had to get on disability.

Although she had surgery, lupus still made the immune system hard to fight. Three years after her surgery, she had a massive stroke in the brain stem, one of the worst strokes a person can have.

From that point on, I wanted to know more about lupus and how I could help toward the recovery for my mother.

All of her life she was a fighter in everything she did. I started to think about all the things she had done, and the only thing I could say to myself was “man, she accomplished a lot for someone who was considered to be sick.”

My mother fought for six months but unfortunately passed away on August 14, 2000 at home surrounded by the people she loved the most.

From that day on, I vowed to make others aware of the beautiful person my mother was and how lupus affected her life.

But during my plight to raise awareness on lupus, I didn’t know years later I would battle my own fight against the disease.

My Story On Lupus

Fast forward two years after my mother’s death.

I was in the beginning of my senior year in high school. Around Thanksgiving, I remember getting very ill. Doctors were unsure what was happening to me.

I was out of school for about two weeks and my symptoms didn’t really show any signs of improvement.

I was now having trouble breathing. I went to the ER to be sent home and told to follow up with a specialist. My father eventually took me to see one of my mother’s doctors.

During the examination, the doctor was concerned that my heart raced very fast and my breathing sometimes was abnormal.

After numerous tests, the doctor could not provide an answer as to why I was feeling sick.

All the tests came back normal. So he tested for lupus around the heart and checked for blockages in my body. Still nothing came back.

As the weeks went by, I lost a lot of weight but my symptoms did begin to get better.

But two years later, I would feel a sharp pain in my chest that had me frightened for my life.

After a rush to the emergency room, doctor’s said, you’ll be fine with antibiotics, because pneumonia was “all it was”.

And that I did. I began to get better until two years later while I was at Rutgers University, I got sick again.

This time, doctor’s in the emergency room were not sending me home with antibiotics.

I remember the emergency room doctor coming in my room with a very grim look on his face. First, he told me my blood count was severely low, and I had pneumonia again but this time proceeded to say one thing that scared me : have you ever heard of sickle cell anemia?

Pneumonia again within a two year period? All I could say was yes I’ve heard of sickle cell anemia.

My immune system was so low, my blood count was so low, that doctor’s started relating it to sickle cell. But sickle cell anemia is generally inherited and I knew absolutely no one in my family who carried that trait. While that did not mean I couldn’t have sickle cell, I just felt like it wasn’t.

But I went with it. Further tests revealed that I did not have sickle cell but they did, however, found a small mass on my lung. There, at the age of 21, I was faced with a cancer scare.

I had a biopsy on my right lung and the mass was deemed to be benign. I was thankful, but now I had to go to numerous doctors to find out how that mass got there and to monitor it.

I’ve heard sarcoidosis, rare blood disorder, and again not one doctor could figure it out.

The mass hasn’t grown since but I do get it checked regularly.

Over time, I started to get better until about six years later, symptoms started to arise again.

This time I was always fatigued, had unexplainable pain in my body, my joints were hurting, often times I had trouble breathing, and my hair started falling out in patches.

After numerous trips to my primary care doctor and ER, still nothing came back.

They would just send me home with prednisone for the breathing, indicating some inflammation in my lungs.

Ironically, prednisone is a steroid to treat lupus patients, but was given to me to help build back up my immune system at the time.

That was until one day I came home from work and my father looked at me with the most worried look I had ever seen on his face.

I asked him what was wrong. He asked me was everything okay at work. I said it wasn’t the greatest but okay and I proceeded to ask why.

He said because you have a rash on your face and it is the shape of a butterfly. He knew the disease all too well.

And we both looked in the mirror and saw a rash in the shape of a butterfly on my face.

During that week, I started to break out in hives and became very ill like I had the flu.

I went to my primary doctor again. You have a respiratory infection he says. I became angry because again being sick and sick and was being sent home with antibiotics.

This time, I told him when he checks my blood, you need to check for lupus again.

“I seen the butterfly rash on my face and my hair is falling out,” I exclaimed and showed him my head. I wasn’t trying to claim I had Lupus but I just knew something was going on.

The years I’ve been seeing him, he was always hesitant to check for lupus because all the symptoms over the years did not match to lupus, as he said.

My doctor checked for lupus again and this time, my ANA came back positive. My primary doctor was now referring me to see a Rheumatologist.

Positive ANA

ANA stands for Antinuclear Antibodies. ANA is usually tested through blood work and is used to check for autoimmune diseases.

A positive ANA does not necessarily mean you have lupus.

This is why my doctor sent me to a Rheumatologist so further tests can be made to determine if I had lupus.

Your doctor will check for medical history, do a complete exam, blood and urine sample, and will test kidneys and rheumatic factors.

Mixed connective tissue disease

In March of this year, I was diagnosed with mixed connective tissue disease.

Mixed connective tissue disease (MCTD) is a rare autoimmune disease that has symptoms of multiple connective tissue disorders, including lupus, scleroderma, and polymyositis. The connective tissue disease is commonly known to cause pulmonary issues, among other problems.

It was a sigh of relief to finally have some answers.

I have started a medication called Plaquenil, which is used to treat mild forms of lupus and conmective tissue disorders. My mother was on the steroid Predisone, because her case was much more severe than mine.

I always remember when my father would tell me my mother’s story on lupus, he said it took doctor’s years for them to properly diagnose her.

In fact, it took her to almost die for them to equate her constant sickness with Lupus. She was 19 years old and a student at Howard University at the time. The smart doctors at Howard University were able to give my mother a name for the symptoms she experienced for years.

I just remember years of not feeling well, unexplainable swellings in my body, pain in my body, shortness of breath, all the tests done in the world and nothing coming back with an answer.

Lupus story: facts

This is very real fact about lupus: it is hard to diagnose. It is often mistaken as other diseases and symptoms closely mimic HIV symptoms.

The most common signs of lupus are:

• a red rash or color changing on the face, often in the shape of a butterfly around the nose and cheeks
• painful or swollen joints
• unexplainable fever
• chest pain with (deep breathing)
• swollen glands
• extreme fatigue (feeling tired all the time)
• unusual hair loss (mainly in the scalp)
• pale or purple fingers (from the cold or stress)
• sensitivity to the sun
• low blood count
• depression, trouble thinking, and memory loss

Lupus can affect any major organ in your body and it always imperative to keep track of your symptoms and make your doctor aware of any new aches, pains, and reactions to medicine.

I call the disease the great pretender, because while you can look fine on the outside, you can be feeling terrible on the inside.

Living life with an autoimmune disease

My recent diagnosis only makes me want to become healthier. The goal is maintaining your lupus by preventing flare ups as much as possible, and eliminating stress.

My doctor emphasized the importance of remaining stress free. While I do not have lupus, it can very well turn into lupus. This is why I’ve taken the step to making a lifetime commitment of staying fit, eating more healthier, and staying out the sun.

Lupus isn’t a disease with a simple answer and taking a pill will not make it go away.

It is a non-curable disease that can have periods of remission. But I know adding stress eliminators to my life will help me better manage the autoimmune disease I have.

After finding out my mother had the disease, I made it my business to make those aware about the disease.

With previous knowledge about the disease, having very supportive family and friends around is helping me get through my recent diagnosis.

When someone asks me how I feel today I say: I’m pushing. My goal is to continue to live my life just like my beautiful mother did. And that she did.

To read more on lupus. Check out our fact sheet here.