Imagine living with not one illness but three. This is a story of Staycia’s journey with Lupus, Osteoporosis and Cirrhosis of Liver — yet she remains upbeat not allowing her impairments to cast a shadow over her life and encourages all of us to Live Fully.
Staycia grew up in Mandeville to a single parent mother. She shares that she had one sibling, a sister, and went to the Manchester High School and then on to Northern Caribbean University (NCU) where she pursued an associate degree in Business Administration. It was during her time at NCU that she became ill and after a series of tests, discovered she had Discoid Lupus, a chronic skin condition of sores with inflammation and scarring favoring the face, ears, and scalp and at times on other body areas.
This all started during one of the times I visited my hairdresser and she told me point blank to go straight to the doctor because of how my hair was shedding. I was 24 at that time. After living with it for a few years the hospitalizations began.
My first admittance was in 2016 and to date has been the worst hospitalisation I have ever had. I was there for 3 weeks with an ongoing fever. This fever was so high that I became delirious at different points. In one instance I felt as though I was having an out of body experience. The fever was so high it would rupture my skin. The next 6 months proved to be particularly challenging which is somewhat of an understatement. I could not eat. My stomach kept rejecting everything. It was rough because I was sick most of the time.
Having lupus depletes your energy significantly so that is what I was dealing with. I would wake up okay but a few hours, sometimes minutes, I am sick and this has been ongoing since 2004. I would also have small hospitalizations in between. Throughout this time the doctors were treating my symptoms but not the root cause. Over the 6-month period (referred to above) I could not eat anything. All I had was juice and ice. I went from 140lbs to 112 lbs. I had pimples all over my body that became sores which left my skin raw. I did so many tests during that period which all came back inconclusive.
I was admitted to the University Hospital of the West Indies, still vomiting, still with the pimples and they were thinking it was the lupus. In the third week of being once again hospitalized, a doctor said to me that they have done all that they could without being able to determine the cause of my current condition. After hearing this, a normal person might have become deflated and given up but I remained optimistic. While still in the hospital, a friend came by to visit. She prayed for me in such a way that it caused me to feel so much better. Before she left, the doctor came and said she was sending me home. It was good news for me, even though I still did not know what was wrong with me.
Having left the hospital, I was referred to a skin specialist, who told me he had never seen anything like what I had. He took many photos and said he would have to research. I saw him a few times after my first visit and he finally concluded that I was allergic to gluten.
He was right. Having done a total revamp of my eating habits, I began to improve. My new diet was challenging at the beginning because most products that we consume regularly have gluten. Because of the changed lifestyle, I had to become even more disciplined. I found myself reading the labels of everything before I bought it. Most of what I ate had to be sourced overseas as they were not readily available here in Jamaica.
Things got better and I started to job hunt. I also enrolled in school part time at the University of The West Indies which is where I completed my bachelor’s degree.
TBWM: How has all this experience affected you as a woman; your hopes, your dreams. Has it made you stronger; a fighter? Is it challenging you and how has it increased your belief system?
Staycia: I would like to believe that my experience has made me stronger in every aspect of your question. At first, I did not realise that my experience made me stronger. Individuals would often say, “I wish I had your strength” and I would graciously respond “okay” not really identifying with what they are saying. But then I realized it was true because as soon as I am well, I am up being busy. Finding out that I had lupus and knowing the challenges associated with it, I decided I would go back to school. I acknowledged it would be difficult and that may have been what gave me some added strength as well as my why in that moment, which was to stand up at graduation when my name was called and walk proudly to collect my diploma. When I sat my last course, I was really sick and missed out on a whole semester, but I redid the course. I was so determined. I remembered I had an exam, once, and the night before I felt sick. I could hardly stay up to read over my notes and I asked my mother to read the textbook to me. I remember her discouraging me knowing how bad it was for me, but I told her I was going to do the exam. Unfortunately, I did not make it to that exam. Things got extremely bad and they had to rush me to the hospital. I say all of the above to demonstrate the strength I had to do what I had to. Being sick has allowed me to hold on stronger to my hopes and dreams also.
TBWM: How has been the support from your family or close friends?
Staycia: Everyone has been extremely supportive. I have a strong family support along with friends who check in regularly and that helps me a lot. They do not treat me as if I am sick. They keep me involved as much as I can be.
TBWM: Sometimes illness changes us, our personality. We do not want people around us or we do not make the effort to do anything. Would you consider yourself the opposite?
Staycia: There are times when I do not want anyone around me, such as when I am feeling extremely sick. That was in the earlier days. The illness affected my self-esteem. I would look in the mirror and I not recognize myself because I have changed physically. I lost 5 inches in height. I was 5’5’ I am now 5 feet flat caused by osteoporosis which was another thing confirmed after experiencing back pains in 2017. I remember brushing my teeth one morning and my feet gave way. The long and the short of it is that I was unable to walk afterwards. Even though I could not walk, I drove to work daily. I decided I had a responsibility as I was a branch manager for a financial lending agency at the time. I reluctantly resigned my job in 2017 after my symptoms became so bad, I could no longer manage. I was extremely lethargic and tired. I knew I needed to rest and this was something that the doctor said to me. It was a hard decision, but I had to do it.
Having accepted the osteoporosis, it was shortly after that I found out I had cirrhosis of the liver, as if things couldn’t get any worse. This latest development was another challenge for me.
With all of what I was going through, I registered my business, Stay Alive Solutions, formed to assist young persons after realising that they needed help with resume-writing, interview preparation, and so on. I knew this was how I could keep engaged and give back in a needed area: through mentorship and giving correct guidance. I hosted my first youth empowerment session which was well received and a success. Unfortunately, since then things again became a bit challenging but I tried to stay involved doing outreach at schools and anywhere that needed that kind of input.
I try to live each day as best as I possibly can. I take my medication, do my exercises and generally live each day fully and intentionally. The cirrhosis of the liver is not something I can do anything about. The only cure is a transplant which is not offered in Jamaica. I cannot look overseas as that may be next to impossible because of the long list and so I just live a quality life dealing with what I can daily.
TBWM: When you think about your life, do you ask the question, why me?
Staycia: I did in the first 3 years. When I found out I had Lupus it was not something that was talked about then. Cancer was the highlight of the day. People pretty much summed up Lupus as an autoimmune disease but what you feel or go through is not easy.
TBWM: What is the value of life to you at this point?
Staycia: Living is so important to me. I wrote a book and am in the final stages. I started this book 2 years ago and the title is “Staying Alive”. It is about understanding the difference between being alive and living. I place emphasis on living and enjoying one’s self. Food has become a big thing in my life – not good – but that is me now within parameters. I make my own ice-cream, icicles and pretty much most of what I want. Life for me is living to the best of my ability. With corona, as much as I am at risk, I recently had to say to my sister that I needed to get out. I love nature, so just going out a bit to experience life for what it is and to be reminded of nature, I need that. I now use a wheelchair and I have traveled overseas by myself. I don’t allow any of my impairments to stop me from going after life 100 per cent. I speak positively over my life and I do not want negative energy in my space. I remain optimistic for myself and so I push myself even when I feel I cannot make it. I fully celebrate the days when I feel good.
TBWM: What advice do you have for women in general?
Staycia: If you have an autoimmune illness or anything that keeps you from being yourself, there is a distinct possibility that you will become demotivated. But there are ways to rise above. One of the ways to rise is to ensure that your spiritual life and your personal connection with God, conversing with Him about things others may not understand, are paramount. It makes you feel better. God has a way of providing the answers you need and allowing you to recognize the strength you never thought you had.
When you think you are not well, or feel up to going out, that is the time you need to get up and have people around you or push yourself to be around others. You may have an illness but that is no reason to be grumpy and down. The more you smile is the lighter you feel.
Ensure you have an emergency contact if you live alone.
Your illness must never stop your dream, as a matter of fact, that illness should push you closer to your dream, and as you push, do so in moderation. You must listen to your body and respond accordingly. This is called self-preservation when you do that.
I do not pay a dime for my medications, so that should not prevent any of us from managing our illness. I utilize the National Health Fund (NHF) government program and get my medication from the hospital. It may be a bit more tedious, but I do what I must do. Develop relationships with the key persons at the hospital, doctors and pharmacists. Take your meds because they keep you healthy. Eat healthy. It gives you the needed energy.
Go for what you want. Stick to your plan, with life there is hope.
TBWM: What is your favorite color and why?
Staycia: Light Blue has been my favorite colour. I love the calmness of it and it mirrors my personality.
TBWM: What is your favorite Bible verse?
Staycia: I can do all things through Christ Who strengthens me – Philippians 4:13.
Final Words: Remain positive. People will say hurtful things and it will hurt. Brush it aside. They do not know better. How we react will affect us, so rise above it. Brush it off easily.
I believe you are an exceptionally strong woman. To have all of this happening without dwelling on ‘why me’ is admirable. I pray God will continue to keep you from day to day and that all that you need you will have. I sincerely applaud you for that. You will live to prove that at the end of the day His will precedes all others.
We hope Staycia’s Journey with Lupus, Osteoporosis and Cirrhosis of the liver will allow you to appreciate all that you have. We hope her story will encourage all our women to live fully and not just be alive. After all, there is a difference!
Join Founder Of TheBeyondWoman Jacqueline as she presents a session on 5 Days to Turn Your Life Around – Secrets to living an extra-ordinary life.
In a world that does not foster authenticity but instead throws us a script on how to do life, many are meandering through life. The reason you are meandering is because you are made for more. There is something within that does not align to your current experiences which causes you to constantly search for this “more”. If you have no clue what “more” entails, how can you find it?
And so we spend a good portion of our life hoping that life will become what we feel it to be on the inside of us.
This was me, maybe it is you
Would you like to hear how I found more? CLICK HERE TO FIND OUT HOW
