Thursday, Jul 18, 2019

A woman’s strength

She’s had two mild strokes since her lupus diagnosis eight years ago, but Francene Virgil refuses to allow lupus to be a death sentence, she rather says it has made her a much stronger woman today, and says she’s grateful to God, despite going through it.

“You question yourself as to Lord why me? But as the years went by you say, Lord why not me? It’s obvious he knew I could handle everything, so he allowed this to happen and it made me the much stronger woman that I am today.”

Virgil, who was diagnosed with lupus in 2011, first saw signs that came in the form of rashes on her arm – she sought medical attention, and was told it was probably ringworm and to not worry. She said the rashes kept returning, and her hair started to thin.

The “icing on the cake” for her was an enlarged lymph node on the left side of her neck which had removed and was told wasn’t cancerous, which she was happy about.

But with all her other conditions, she decided to seek medical attention abroad to satisfy herself that everything else was okay. It was at Cleveland Clinic that she said she tested positive for lupus.

She had no idea what lupus was.

“I thought there was a pill I could take and I’m okay, because I’d never heard about lupus up until that time. I had to then do research and found out what this disease is all about,” she said.

In lupus, something goes wrong with a person’s immune system, which is the part of the body that fights off viruses, bacteria, and germs. Normally, a person’s immune system produces proteins called antibodies that protect the body from the invaders. Autoimmune means a person’s 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.

Millions of people worldwide struggle 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.

In 2012, Virgil suffered the first of two strokes while on vacation in Orlando. She was told it was due to a narrow vessel on the right side of her brain, and that lupus patients can have narrow vessels. She was put on lupus medication, hypertension medication because she was found to be hypertensive, cholesterol medication and blood thinners.

In 2014 she had another mild stroke.

“I noticed for a few days at work my head was just killing me, and I couldn’t understand what was wrong. I went to the Emergency Room, and they tested, and I’d had another mild stroke on the same side.”

Virgil was given a higher dose of cholesterol medication to go with her other meds including vitamins and minerals, which she said totaled about 11 pills daily.

No matter what she’s going through she remains upbeat.

“For me lupus is not a death sentence,” said Virgil. “I still live a normal life. I hear stories that are worse off than me, so I know that I’m blessed, and I know that the disease hasn’t take a hold of any of my other organs like my heart, my liver, besides that one narrow vessel in my brain that we’re constantly looking at. It’s not a death sentence for me, and I think my faith in God has helped me, has given me a positive outlook on this.”

She credits scriptures like Philippians 4:13 which says “I can do all things through Christ who strengthens me; and Proverbs 3:15 which says “Trust in the Lord with all thine heart” with having taken her through a lot of the hard times.

“On a daily basis you get fatigued when you have lupus, you have anxiety, so [those scriptures] have helped me to maintain my composure at work and wherever I go.

A supportive family in her husband Edward, children Edneka and Edward III, along with her mother, siblings and in-laws she said have been awesome in helping her.

Virgil also joined the support group Lupus 242, whose members she said have been a support system for her as well, as they bring awareness to the pains and problems, and are able to answer questions on symptoms because they’re going through it together.

Her most recent question to the group pertained to a recent problem she had with her feet and she asked whether anyone had problems in their knees or feet pain and one of the members told her to have the problem checked because it could be her kidneys, a problem she’s now checking into.

Lupus 242 was originally the idea of Debbie Humes, but she got very sick and wasn’t unable to pursue the idea of putting the group together. In 2011-2012, the late Shanelle Brennen, who lost her more than two decades battle with lupus on March 2, 2017 had a rough bout with the disease that put her out of work for almost six months. During that time, she decided to get the group up and running. They launched in April 2012 with Brennen as president and her sister Shonalee King Johnson as her vice president and public relations coordinator.
“She wanted to get the message out there and the main thing for her was that she knew she had a lot of family support, but she did not want anybody to feel that if they did not have that family support that they were alone,” said King Johnson in an earlier interview with The Nassau Guardian. “She felt that a lot of people suffered in silence, and came up with theme ‘Breaking the Silence, Supporting the Cure’ which is our motto. She wanted a way for us to have regular meetings and to provide education. She wanted it to be where someone who was on the other side of an experience could speak to it,” said King Johnson.

King Johnson carries on her sister’s fight. The sisters’ mother Gwendolyn King also had lupus. King Johnson was never diagnosed with the disease.

Virgil said she was happy for the support the group gives.

“They understand. It’s just uplifting,” she said. “You go through anxiety or you go through things – and they’re feeling the same way sometimes.”

King Johnson said Lupus 242 members determine how they want to best interact and engage with the group. She said some are very active in their WhatsApp group and find it comforting to receive a daily inspiration, or a place where they can speak to experiences they’re having and find out whether anyone else has had their experience, or to speak to a new technique they have tried and to find out if anyone else has tried it.
The organization also has a Facebook presence so that members who aren’t physically able to make it out to the once-a-month meetings can stay connected. The group meetings are meant to be light, fun, and informative. King Johnson describes them as an outlet.

“We’re laughing and talking … you would never know that we’re talking about something very serious. Sometimes we would have doctors come in, we would have nutritionists, we have pharmacists come in – anyone that can speak to the illness.”

The month of May is recognized as Lupus Awareness Month, and during the period and beyond, the groups seeks to increase public understanding of the cruel and mysterious disease that ravages different parts of the body. It is Virgil’s hope that when people hear that someone has the autoimmune disease that they are sensitive to them.

“People look at you and say you look well … but they don’t know what you’re going through on the inside. Sometimes you have pain, but you try to just camouflage that with being positive. They might look normal, and pretty and nice and everything else, but you don’t know what that person is going through. It’s not a disease that shows on the outside, so just be sensitive to that person, and care and love them,” said Virgil.

During her eight-year battle with lupus, Virgil says she does all within her power to manage her stress and as she looks to her future she says she sees great things.

“After adhering to doctor’s orders and keeping my weight down, and the support system that I have, I see a bright future in terms of me maintaining what I have, me going into remission and keeping there for a very long time.”

During Lupus Awareness Month, a number of activities are usually on the calendar, and this year is no different, coming off recent World Lupus Day celebrations on Friday, May 10, the group will host a health talk with Dr. K. Neil Parker on Saturday, May 18 at the University of The Bahamas at 12 noon; a Hope Floats Memory Ceremony/Ribbon Formation will take place on Saturday, May 25 at Fort Charlotte at 6 p.m; P.O.P (put on purple) for Lupus takes place every Friday during the month, and people are encouraged to wear purple to show their support.
 

Shavaughn Moss

Lifestyles Editor at The Nassau Guardian
Shavaughn Mossjoined The Nassau Guardianas a sports reporter in 1989. She was later promoted to sports editor.Shavaughn covered every major athletic championship from the CARIFTA to Central American and Caribbean Championships through to World Championships and Olympics.
Shavaughn was appointed as the Lifestyles Editor a few years later.
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