At BellaNaija, we believe in the importance of building a community through our shared experiences. Last year, we shared the story of Toluwanimi Fijabi and her experience living with Lupus. Lupus is an immuno-deficiency condition that is not well known by Nigerians. When Toluwanimi shared her story, we were moved by the number of people who reached out to ask for more information. Today, we are sharing Bright’s story. Her bravery in the face of all the health challenges is incredible. We hope that this story will inspire someone.
I was diagnosed with Systemic Lupus Erythematosus on August 2016, but my chronic illness journey actually began in 2015 with severe joint pains. I used virtually every pain reliever on the market but it did nothing to relieve my pain and discomfort.
January 2016, the fever set in coupled with the severe joint pain that was still very much present. I checked into a private hospital where I was treated for malaria. The relief I felt after the treatment was mild, but very welcome. So when severe headaches started after two weeks, I was very very confused. Right after the headaches started I had to deal with extreme fatigue, face and feet swelling. I had to go back to the hospital but the doctors could not just figure out what was wrong. Doctors precribed more drugs and just like clock work, two days after the swelling was back (I could cope with every other thing, definitely not this) . It became a cycle – face swells – hospital – drugs – I’m better – face swells again.
March 2016, I woke up with this sharp pain at my sides, I couldn’t walk neither could I stand. I was rushed back to the clinic where for the next two weeks I was treated for pneumonia and later discharged.
July 2016, the pain at my sides started in the office this time worse than ever before. Imagine dealing with that and still battling with swollen face and feet, fever and constant vomiting. I could see panic written on the faces of my colleagues with “sorry” here and there as I was rushed back to the hospital. By the time we got to the hospital, my head was already spinning. I didn’t know when I said “Doctor Samuel, you’d have to keep me here, till I get better”. My blood pressure systolic was 190, diastolic 120 (I was placed on anti- hypertensive at age 22 *smiles*), severe chest pain and abnormal heart murmurs were the results from his check. A cardiologist was brought in and he referred me to do an Echocardiogram (ECG) and CT Scan where nothing significant was found in the test results. I started showing other signs and symptoms (Hair loss, weight loss, blood and protein in urine, persistent cough, continuous diarrhoea and sores in my mouth ).
Another Consultant came and said I was showing signs of cancer and recommended I do ANA test, ESR, HIV and Hepatitis just to be clear. I remember vividly that night I cried and prayed for death because the pain was too much and I couldn’t bear to see my mother’s face as she sat by my bed side.
I was discharged a month later – not because I was feeling better, but because my HMO couldn’t afford to pay for my treatment anymore.
On my way to run the some more tests, I got a call from the hospital asking me to come in and sign for the treatment I already received. As I got to the hospital half aware of what was going on around me, I remember a doctor walked in on us (myself and my mum) and advised I do a test to check my blood level as I was looking pale and was very weak. I did and it read 19%. He advised I had to be transfused immediately as I may not survive. During this period my test result was ready, ANA came back positive and my ESR was very high which implied I had an inflammation. After much hassle, a thensame, Dr. Imma from LUTH was invited. He suggested I had LUPUS, I remember my Mom say ‘’Gini bu loopus? diseases ndi ocha” What is Loopus? white man’s disease. The doctor (Dr. Samuel) who had been attending to me also suggested we use a teaching hospital as it was affordable and I get to meet other Lupus patients.
On August 17, 2016, my parents and I set out to LASUTH Ikeja to verify what was really wrong. We waited almost the whole day to see a doctor. We finally saw Dr. Ezomike who confirmed I had LUPUS and it had started to affect my kidneys. I was immediately given steroids through IV right in his office, as there was no bed space in the hospital. He prescribed two immune suppressant (to reduce the damage on my kidneys) to choose from; one was “cheap” but could render me barren and the other was quite safe but very expensive (a sachet cost N8,000 and that’s just for two days). We had to go for the latter, which wasn’t so easy considering the money we had spent.
I felt my world was upside down, I cried all the way home from the doctor’s. I felt so betrayed by my body. I was in denial for months and I kept it hidden from a lot of people. Looking back there was no reason to feel embarrassed.
Many people don’t know what Lupus is. The disease is beyond painful; it feels like never ending throw ups, debilitating fatigue, chronic pain all the time, major depression and anxiety, suicidal thoughts, extreme weight gain (from 75kg to 120kg), exorbitant amount of money spent on drugs/procedures/tests/treatments, many days and nights in the hospital, the look on my loved ones face knowing I am the cause of their sadness, the “come see my pastor sermons” or “let’s go to the mountain for prayer” unsolicited advice from non medical personnel, and so much more. My life is nothing like it used to be.
Lupus sucks and that’s my new reality, as it literally test one’s ability to put up a strong fight. I have had to make peace with not knowing what each day brings.
I stumbled on Toluwanimi’s story on BellaNaija, her strength, her struggles, it was so relatable and so soothing.
Finally someone that understands my kind of pain. I reached out to her and speaking to her was like I have known her for ages. She introduced me to THE LUPUS REFUGE FOUNDATION (TLRF) a safe haven for Lupus warriors to live unapologetic lives. TLRF is helping to redefine what living with lupus looks like in Nigeria and possibly Africa by creating awareness, Lupus advocacy, psychological, physical and sometimes financial support for lupus warriors. I must say it has been a jolly ride with the ladies of the Lupus Refuge Support group.
l cry when I am weak, I pray to show I’m grateful, I laugh to show I’m alive, I live because this pain will not win. I hope one day a cure is found and or Lupus drugs are subsidized because this disease is expensive.
My name is Bright Okafor, 24 years old female Nigerian, I have Lupus Nephritis and this is my story.
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