My name is Joy Ogheneovo Erekpaine. I am 35yrs old. I was diagnosed with Systemic Lupus Erythematosus in 2014. (SLE is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue in many parts of the body.)
In October 2014, I was rushed to one of the General hospitals here in Lagos, Nigeria due to heavy bleeding. I had fibroid issue. I bled to the stage of needing a transfusion. I was in that hospital for 17days and I was given about 10 pints of blood.
The more I was transfused, the more the blood came out. At a point, the consultant that came to see me said I was anaemic and that they needed to carry out a procedure to ascertain what was really wrong.
However, they couldn’t do this because I was still bleeding. So, instead of keeping me, they transferred me to Lagos State University Teaching Hospital (LASUTH).
On getting there, they were on strike and they recommended for us to visit Island Maternity Hospital at Marina, Lagos.
On getting to Island Maternity Hospital, I was promptly attended to by the medical personnels available on duty. Tests were soon carried out and they were able to stop the bleeding. I was discharged and asked to get back for check-up the following week. I was discharged on a Monday and by Friday same week, I was rushed again to Island Maternity Hospital.
How we got there is still a miracle because I couldn’t breathe through my nose but my mouth. I had lost my voice completely and coupled with the heavy traffic on Third Mainland Bridge that day, it was God that came through for me.
On arrival at the hospital, I was taken to the ER(Emergency Room) and placed on oxygen. Later, the consultant that came to see me asked so many questions and tests were run again. The consultant said he couldn’t place his hands on what was happening to me and so another referral came.
I was given two referrals. One to LASUTH and the other to Lagos University Teaching Hospital – LUTH. We got to LASUTH that night and there was no bed space, we were told to go to LUTH. We were told that if there was no bed space, then we should ask for “Spill Over Ward”.(It was also the Ebola crisis time with Nigeria). Eventually I was admitted at the Spill Over Ward in LUTH.
The night I was attended to- different team of doctors came, asking questions and running series of tests on me. It was devastating but God showed Himself mightily in my life. I had rashes on my neck, I had blood patches all over my body. My platelets were about 10,000.
I was transfused again totaling 28 pints of blood received by me in LUTH. My blood sample was taken to South Africa. Blood was coming out anywhere it could flow out from my body. I was vomiting lumps of blood, there was blood in my brain, blood in my stool, my eyes were bloodshot, my nose was running with blood gushing out, my menstrual flow wouldn’t stop too.
With the series of tests carried out, I was told that I had West Nile Hermorrhagic Fever which is under the Ebola disease but not as deadly as Ebola. I was isolated there at LUTH while treatment was going on. It was horrible, so horrible. At a point all I was thinking about was death. Some family members had started saying it was spiritual, I was told I offended someone etc.
At a time, the doctors had to set up a central line for blood transfusion and giving of drips as all my veins had collapsed. I didn’t eat for five days as I was being monitored. I gave up on myself as I couldn’t understand what was happening again. I sent messages to my pastors and they came over. Shiloh was fast approaching and I kept telling God I wanted to serve Him again and I needed to be well to do that.
On one of those days, I told my pastor I wanted to be discharged and taken to Canaan land so that I could die in the house of God. Yea, it got to that extreme. My pastor put a call through to Bishop, he prayed for me and that very day the vomiting of blood ceased. Then the subsequent tests being carried out began to make some better sense.
Eventually, the test result from South Africa came in and it showed LUPUS. Haaaa, what is lupus again? The doctors tried to explain it all but I wasn’t taking it. All I wanted was to go home. I got well and was discharged.
When I was being lectured by the doctors on lupus, I didn’t really pay attention. My medications got finished in Feb 2015, I was so happy(ignorance got me) and by March I was admitted again. After I was discharged I googled and began to study all about it. My life changed. It has not been an easy journey with lupus.
Depression keeps creeping in. I stopped work and still not working till now. At a time, my own father said it’s better I’m dead than living and wasting people’s resources for a sickness that can’t be cured. I’ve lost friends and relationships. But I haven’t lost myself. Lupus has taught me to LOVE me more. I keep more to myself. When people around start behaving funny because I have lupus, I shut them out of my life.
It has not been easy, but it has been God. I used to have this nonchalant attitude towards things but it has all changed now. Even when I get depressed and frustration creeps in, I still remember I have God in me, and I keep moving up. I cry! Yes, to ease the tension in me.
It has been a sweet and sour experience. I see myself these days more of a warrior. Lupus cannot and will not pull me down but I will pull it down. I will defeat lupus. I will shame lupus. Things may not be as they should, but I always remember that I’ve got God in me. Life is beautiful so don’t allow your challenges define you.