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The daily struggles of living with Lupus

  • Petrell Lloyd can’t forget the time she forgot her baby.

Guardian Lifestyles Editor

Published: May 16, 2017

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For a month, Petrell Lloyd, who was then in her early 40s, didn’t remember she had a toddler at home. It’s a time in the mother’s life that she looks back on as terrifying, but with some degree of relief as well, because what transpired from her forgetting she had recently given birth to a son, led to her being diagnosed with lupus, after years of being treated for everything else under the sun, including arthritis.

“I kept going to the doctor, and they kept giving me medications. I kept telling them something was wrong with me.”

In 2011 Lloyd was found at home, unresponsive, by her mother; Lloyd had caught encephalitis, an inflammation of the brain that causes flu-like symptoms such as a fever or severe headache.

It can also cause confused thinking, seizures, or problems with the senses or movement. Many cases of encephalitis result in only mild flu-like symptoms or even no symptoms. Severe cases of encephalitis, while relatively rare, can be life threatening.

Lloyd said her temperature had spiked to over 200, her brain had swollen and she had bleeding on the brain.

“It was a good thing my mother knew what to do,” said Lloyd. “The infection to the brain they said triggered it. I had lupus in my system from 2003, but we never knew. They were treating me for arthritis and other things, but not knowing that’s what it really was. What really kicked it off was I caught encephalitis on the brain, and I went into the hospital in 2011. The brain was swollen and bleeding and I had a fever over 200. I basically was between …” she recalled.

Lloyd spent eight weeks in hospital, one month of which was in the intensive care in New Providence before her husband took her to the Cleveland Clinic for a second opinion, at which time she was diagnosed with lupus.

At her diagnosis, her question to the doctor was, “What does that mean?”

“Even though he told me it, and I had heard one or two persons say they had it, I didn’t know what to expect or what my next step was. Where do I go from here? It’s like everything in me just went to the bottom.”

In lupus something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders” like the flu). Normally, a person’s immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between the foreign invaders and the body’s healthy tissues, and creates antibodies that attack and destroy healthy tissue. The autoantibodies cause inflammation, pain and damage in various parts of the body.

Lloyd is one of millions of people worldwide struggling with the often debilitating health consequences of lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys and brain.

The former nail technician had to quit working, because even though she wore a mask she said the chemicals got to her. She would get headaches, and she would get tired and fatigued on a daily basis. She said she was always painful.

Life with lupus she says is a daily struggle.

“It’s a challenge everyday — the pain, the tiredness, the fatigue, the headaches.”

Battling the disease isn’t cheap either. Lloyd estimates that she averages up to $1,000 per month on medications, but she says National Insurance benefits help cover the cost of her medication bill.

She encourages others diagnosed with the disease to not give up and to fight.

“This is a struggle and a challenge everyday. And the thing about it, a lot of persons — even within the family — don’t understand the depths of the disease itself. Even with my husband [Keith Lloyd], trying to explain to my husband on a daily basis how I feel … what I go through on a daily basis — because sometimes it’s a struggle to get out of bed, it’s difficult.”

Lloyd said she daily has to make up her mind that she has to continue to live life, and do all the things she has to do for her six-year-old son Keiron, the child she for a month had forgotten she gave birth to. She gets him off to school daily.

“I have to struggle to get up to deal with him on a daily basis — ensure he’s bathed, his bag is packed, his lunch is packed and he’s dressed properly. I tell my husband I will deal with the little one and he just deals with himself. It’s a struggle, but he’s like, ‘Mommy I want you to help me’.”

Despite what she may be feeling she helps him, because she can vividly recall the period when she could not remember him.

“With the encephalitis to the brain, I didn’t remember that I’d had a baby. I was in ICU. I heard them, but I couldn't respond for about three weeks or so. After four weeks or so, I said Keith I had a baby right. He said, ‘Yes Petrell.’ It’s a good thing I kept pictures on my phone. He let me see the pictures on my phone, and I was like oh my God. The baby was about two years old. When I looked at the photos

I just burst out crying, because that Tuesday morning I had dropped him to school and promised to pick him up and he was expecting me to pick him up. But I ended up in hospital.”

Lloyd’s older children Keith Lloyd 21, and Keitra, 18 are both in university.

Lloyd said she strives to teach her family about lupus, and that she voraciously reads whatever she can. She’s also encouraging her children to get tested, now that she has had a positive diagnosis.

“I want them to get tested, because they might not get it, but their children or their children’s children [might]. And I want them to be prepared — be more knowledgeable about the disease itself. It’s something like cancer, people say it’s in my family, but I ain’t going to get it. Don’t have that kind of laid-back attitude that you won’t get cancer or you won’t get this. Have an open mind.”

During Lupus Awareness Month Lloyd encourages those people diagnosed with lupus to stay strong and strive to remain positive. She also encourages families to support the lupus afflicted.

“It’s a struggle for the family, but it’s more of a struggle for the person who has the disease. You have to get information and find out how best you can help the person and what can you do for the person on a daily basis, because they need the support,” she said.


(Including P.O.P. — Put on Purple Fridays in support of lupus fighters).

Saturday, May 20: Hope Floats annual balloon release ceremony at the top of Fort Charlotte, to remember those persons who have died from lupus. This year’s balloon release will be held in honor of deceased Lupus 242 president Shanelle Brennen.

Saturday, May 27: Health talk with rheumatologist Dr. K. Neil Parker at the Harry C. Moore Library at University of The Bahamas.

To support the cause, persons can attend events and purchase Lupus 242 t-shirts, wristbands or car bumper stickers. Proceeds go towards local awareness initiatives and global research. For more information on the group and upcoming events, visit www.facebook.com/lupus242, email lupus242@outlook.com or call 242-525 9967.

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Last Updated on Tuesday, 16 May 2017 16:15

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