Shaun Munnings is just 49 years old, but she's already had the photographs taken that she wants to be used for her obituary. After being diagnosed with lupus two years ago, she took the photographs because she says she knows that tomorrow is not promised to her.
"People get upset when I talk about death, but I tell them I'm not promised tomorrow, and with lupus, I could die this afternoon from the complications -- that's just how it is."
Munnings has suffered through misdiagnosis after misdiagnosis in her life, going as far back as her childhood when she said would indiscriminately break out in sores and swell up and would be treated for allergies. In her adult years, the trend pretty much continued -- misdiagnosis after misdiagnosis -- from spinal arthritis to one doctor telling her she needed to have surgery. And don't even think about the many different types of medications she's been prescribed over the years. When her mother died in 2007 it all came to a head.
"Everything pretty much went out of control because I was stressed out about my mother's death and grieving. I lost a lot of weight. I had rashes. I had sores in my mouth, and I was extremely tired...not the 'oh, I had a hard day' kind of tired; it was like, 'I can't move my body'. It was like my brain was telling my limbs to move, but it just wasn't working," said Munnings.
As in the past, she sought medical help.
"When the doctor asked me what part of me did I not feel pain, I said my eyelashes and my hair. Just to move to try to shift my body to get into a comfortable position, that was pure pain. Having the sheets touch me was pure pain. My body felt like it was on fire. I got to the point where I could not move and I was having pains in my chest like I was having a heart attack," she said. "I knew it wasn't a stroke because I felt the pain." Through it all she said the fatigue was extreme. "I was so tired that sometimes I would have to lift my legs to get into the tub and on a few occasions would end up being stuck in the tub because I could not get back out. My body wouldn't work for me to lift it over the tub."
After seeing too many doctors to count, Munnings finally found a medic who noticed the rash on her face and told her it looked like the malar rash also called the butterfly rash. It meant that Munnings could have lupus. After a battery of tests, Munnings was finally diagnosed in the latter part of 2011.
Lupus is a chronic inflammatory disease that occurs when the body's immune system attacks its own tissues and organs. It can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus is the facial rash that resembles the wings of a butterfly unfolding across both cheeks. Some people are born with a tendency toward developing lupus, which could be triggered by infections, certain drugs or even sunlight. While there's no cure for lupus, treatments can help control symptoms. It's important to remember that no two cases are exactly alike.
Munnings said she felt relieved at finally being diagnosed correctly, especially after the frustration she felt when she knew something was wrong with her, but people kept telling her that it was all in her mind.
"I know lupus can be difficult to diagnose, but when you know something is wrong and people are telling you it's all in your mind, it can get frustrating," she said.
Having lupus she said also made her realize just how strong she is and what she can deal with. That's why she said she had the strength to have the pictures taken that she wants to use for her obituary. As for plans, that's the only one she says she can make, as she does not know how she will feel each hour or each day, so she makes no other plans.
"I can't plan ahead. If you want to invite me somewhere I can't tell you, 'yes I will be there', or 'I will not be there'. When I first started the medication after I was diagnosed, a week later I was like, 'yes, I'm back'. I'm a person who is used to doing things for myself...I like to work in my yard, and if anything needs to be fixed I'm going to try it myself, and if I can't do it then I call someone else. The medication was working very well for me and I felt like the old me, so I started cleaning the house from top to bottom. Cleaned the swimming pool, went swimming. Later on that night, I could not move. I [lay] in the bed and I cried. I called the doctor who said that I needed to remember that the woman I was, was gone."
It was after that that she realized she had to take each second and each hour at a time.
"Yes someone could walk outside and get struck by a bus, and their life is over. But with us, it's like, 'do I have the next second, do I have the next minute, do I have the next five minutes'."
She has a handicapped sticker for her car that allows her to park in handicapped parking spaces. When she started feeling good again, she removed it from the window of her car; the doctor told her to leave it up, because she may walk into a store but might not be able to leave without someone carrying her out.
"I just take one day at a time, and through prayer all things are possible," she said. "Right now I'm feeling good, but about two weeks ago I was like, 'Oh, Lord I'm ready to meet you'. When I first started out, I told the doctor...you know what it is for a person who knows that she serves a happy God to be praying to him -- the God of life -- to die."
The mother of a 23-year-old son said that while she may only have been diagnosed in the last two years, when doctors went back through her medical history, they noticed that she showed lupus traits during her pregnancy, going as far back as her childhood sickliness that left everyone wondering what was wrong with her.
Munnings, who works in accounting, said her employer has been understanding of her struggles over the years and has worked with her. When she can't get into the office, they allow her to call in from home.
Even though she has insurance through work, she says lupus has also hit her hard in the pockets. She has to spend at least $600 per month out of pocket for medications and doctor's visits.
Munnings who is a member of Lupus Bahamas 242 also credits the group with helping her to get through.
"What people don't realize is that while we try to keep ourselves on a happy note, we still have the reality of lupus looming over us. I love the members of the group because you realize even though lupus treats everyone differently, at some point we've all gone through the same thing. So it's like, 'How did you go through this', and it's truly a support group, because you can go there feeling in pain, but when you leave, you still have the pain, but you're laughing."
The month of May is recognized around the world as Lupus Awareness Month, and Nassau-based support group Lupus 242 is leading the way in the education about the debilitating disease that affects an estimated 5.5 million people globally. There are no real statistics on the number of people in The Bahamas with lupus. Lupus 242 to date has 50 active members.

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