Felicia and I go way back to primary school days and then later on to high school (Long Live the White and Blue) and recently reconnected through a special way that brought together 60+ past students. I am so happy for the reconnection and seeing the progress that everyone has made 24 years later. But anyhoo, this isn’t about that but about Felicia, the ever-caring, ever-loving phenomenal and strong woman that she is. A few years back, I found out that Felicia suffered with Lupus but after speaking to her for this interview I see that Lupus is suffering not Felicia, she is kicking and fighting and not letting it take her down. Her outcome on life makes me want to live life to the fullest. She took the time to answer a few questions and here I am sharing with you all:
When did you find out you had Lupus?
Answering that question is complex, my actual diagnosis of systemic lupus erythematosus (SLE) was in March of 2007, as I lay dying in a hospital in Miami Florida. My lupus story though really began as a child with unexplained fevers thought to be rheumatic and allergies, it reached a pinnacle years ago when I was 18 or 19 years old. Distinctly I started having problems sleeping, pain in my joints, swelling etc to the point I couldn’t sit, walk and needed to be carried to the doctor at one point. Later through the years I struggled with unexplained pain, a plethora of allergies, chest pain and pain when I was exposed to the sun and circulation issues in my legs. But through it all diagnosis evaded me and I continued suffering with the invisible illness until 2007.
(Doesn’t she look fabulous here, even though she was sick)
How has your life changed since diagnosis?
Lupus changes everything you know about yourself and those around you. To begin with throw out the rule book this disease is a chameleon so I too had to become one in order to not just survive but live successfully. I had to learn my body, in order to be able to know when it was beginning to feel the strain of me doing too much, when a flare was coming so I could cut back. I had to learn to examine my skin for signs of bruising and cuts I didn’t even know when I got it. I had to be vigilant and fear a cough like the plague because for lupus warriors a cough could lead to a cold, which would lead to pneumonia and a lung infection and death. So I have to always be wary of people around me carrying small infections like colds harmless to them but life threatening to me. I have always been a very active person running track at school and going to the gym regularly; lupus has meant cutting back to manageable levels and sometimes none at all. I had to be the one to say if your kids have a cold please they can’t come over. I had to be the ‘flaky friend” who cancels at the last minute, can never commit to a plan and is home because it’s too sunny outside. So lupus changes everything about your life and that’s a continual process, I have to be prepared to if need be to adjust my perspective.
I have Raynaud’s Syndrome which is a condition that sometimes accompanies lupus: I call it my ride or die syndrome. It means that the blood circulation in my extremities, hands and feet are painful as the blood tries to squeeze through to get to my fingers and toes. It is as painful as it sounds, and it leaves the hands and feet black in appearance for months. I had been used to seeing it in my feet but my hands were another matter. I was a little vain not wanting to have my hand looking horrible and disfigured for months.
I love the beach, the sun but I also have photo-sensitivity so I can’t go out in the sun as I would like. Not unless I cover up completely, wear sunglasses and sun block and long sleeves and long pants. Being a Caribbean girl it’s a challenge, but I cant risk getting flares over going out in the sun, I have too much to live for,
What are some of the biggest challenges of living with a chronic illness?
Lupus makes it hard to be a normal mom, especially when my son was a toddler; running around with him was exhausting sometimes. Even when he has a cold to date, I will wear my mask at home and he knows it, so he wears a mask too so I don’t feel strange. He is my inspiration and I thank God I have a kid who is so selfless he will sit quietly with me in the bed when I’m too tired to play with him. These are the blessings I count every day.
Not being able to care of oneself. If I’m having a flare, I means can not take care of anyone not even myself. When my Raynaud’s was bad last year, my hands were swollen and painful for months. It was difficult doing anything much less cooking or bathing. I wore disposable gloves to protect my hands from infection I had small cuts at the joints. I wore a mask since my white blood cell count was even abnormally lower than it has ever been. That’s the ugly side of lupus people never see because we as lupus warriors stay away from people when we are in pain and emerge after as beautiful butterflies.
Being unreliable is a challenge because I’m used to being the reliable person everyone counts on. Lupus makes me the last person you should call in an emergency. My friends joke about how I never answer my phone, I respond to texts days later sometimes, and I always cancel plans. They know it’s because I have to see how I feel to know if I can commit myself to an activity. Sometimes I have unexplained hoarseness because of my allergies and so I can’t talk on the phone. Occasionally I have brain fog, another unpleasant lupus symptom which means you may be forgetful, confused and just mentally just not as sharp sometimes. Its just one of the things you compensate for by using sticky notes, using all types of digital reminders, alarms. Google calendar is my best friend at this point and frankly knows me better than my husband.
Also being married with lupus has its challenges because being with a lupus warrior means the spouse has a lot to do and has to be very understanding. Beyond the fact that sometimes you simply need caring for, you sometimes there are intimacy issues that are very real to deal with. I think any spouse of a lupus warrior is themselves a hero of sorts.
What are some of the common misunderstandings about lupus?
People believe we are lazy. Because we don’t look sick we must just be using lupus as an excuse not to be productive. Unfortunately we experience a significant amount of fatigue that no amount of sleep can offset. Sometimes we go to bed tired and wake up even more tired than before. Additionally it usually means that a flare is coming so we need to rest our bodies.
Some people believe that lupus is contagious and this is simply misinformation. It is possible to be transmitted from a mother to a child but is it very unlikely. Only 5 percent of people pass lupus on to their child. Lupus is an autoimmune disorder for which there appears to be some genetic link, but science has not yet solved the mystery.
Lupus is like AIDS. AIDS is an immune deficiency disease Lupus is an autoimmune disorder where the immune system attacks itself because it cannot tell the difference between antibodies and antigens. Lupus is a chronic disease which goes through phases of mild symptoms to phases of worsening symptoms. Just imagine your body attacking itself the overall effect of which is pain and deterioration of your internal organs.
We get judged a lot by people who have no idea how debilitating lupus is. The physical strain is immense and instead of judging people should be sympathetic and ask how you can help or alternatively not comment at all.
What advice would you give those battling lupus?
My advice is to not give up, lupus means to kill you but you can give it a hell of a fight. Don’t ever think that it can’t be beat because anything can be beat if you resolve to have faith. You cannot do this alone, I don’t care how strong you think you are you are not strong enough. Make sure you have a good network, a solid support system that will be there and give non-judgmental care and assistance.
Find your faith and for many of us that means, find God to help you make sense of all that is happening to you. This lupus struggle is going to be a long hard fight. You may have periods of rest but as I learned this past year it can get worse, so be prepared for that as well.
Don’t let the depression and fatigue that comes with this disease take over your mind. Be strong be brave and most of all be resilient, make no mistake this is the fight OF your life FOR your life.
You are not alone in this. Connect with other lupies or lupus warriors, or spoonies as we call ourselves. Shared challenges and shared experiences serve to make us stronger. We learn from the victories of others and their difficulties too. A word of encouragement from someone who has been where you are now is invaluable.
How has living with lupus affected your career?
For the last couple of years I worked as an insurance producer and I was able to take time off when I was ill to recuperate, sometimes 3 months at a time on Doctor’s orders. I don’t believe that everyone has that luxury. But for the most part it has limited me in the sense that I don’t want to be in a very stressful environment. Even an insurance sales environment is stressful with deadlines and sales goals always looming. I have had to refuse opportunities career wise that I would have been able to take advantage of if I was not battling lupus. It’s nerve wracking for someone like me who was always an overachiever and ambitious to accept there are just some things I cannot do. Lupus makes you reinvent yourself and you’ve got to leave a large margin of error otherwise you will always find yourself lacking.
Whenever I find that happening I always count my blessings, I’m alive today, I’m not in the hospital today, I’ve got a supportive family, my mom is amazing, my husband is a pillar of support. I’ve got friends who will be here if I need it and I have things to look forward to. So I thank God for the small things because it means I’m still here, for that I am eternally grateful.
(Felicia, her husband and handsome son)
I thank Felicia for opening up to me and allowing us into her world and seeing the struggles that she goes through….she has an army surrounding her and we will be there to pick her up when she needs it.