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“I live because this pain will not win!” Read the Story of Bright’s Bravery Living with Lupus

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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.

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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.

Photo Credit: Dreamstime| Rawpixelimages

25 Comments

  1. Adeleke

    July 5, 2018 at 3:33 pm

    I am happy you are forging ahead and healing shall be yours, permanently by the power in the Blood of Jesus. I also use this forum to remember my dear sister Busola Oyedokun who sadly passed due to Lupus.

    • meeeeeeeeeee

      July 5, 2018 at 10:04 pm

      may busola’s soul continue to RIP. she fought a brave battle and I am glad she won. may God watch over the twins and deir big sis.

    • The Lupus Refuge

      July 6, 2018 at 10:49 am

      We keep fighting because of warriors like Busola. And we will never stop. So sorry for your loss and may she Rest In Peace.

    • Dee

      July 6, 2018 at 11:39 am

      Amen!!! Lupus is really a deadly disease and its easy to forget sometimes. Her loss could not have been easy. God continue to be with you all.

  2. Lol

    July 5, 2018 at 3:43 pm

    Your stories are so brave and inspiring. Managing a chronic illness in naija can’t be easy. God is your strength.
    The antimalarials made a difference as mainstay of treatment is often hydroxychloroquine or mepacrine. Otherwise newer drugs like biologics such as rituximab are being used but cost 3million per year.
    The disease is autoimmune where the body’s immune system attacks itself as opposed to immunodeficiency as stated in the opening paragraph. Lupus comes from word lupin which means wolf in latin.
    May you win your battle against it in Jesus name, amen.

    • @lol

      July 5, 2018 at 4:02 pm

      I was dx with Lupus in Nigeria then after tests were done in the EU dx with Rheumatoid Arthritis and put on a biologic. I am not where I am supposed to be but praise God I am not where I started.

    • Bright Okafor

      July 6, 2018 at 9:23 am

      Amen.

  3. Physio Tinu

    July 5, 2018 at 4:03 pm

    I applaud you and it’s inspiring and informative to read about your experience. We have worked with a couple of people diagnosed with lupus and I will reach out to them to tell them about the lupus foundation.

    • Bright Okafor

      July 6, 2018 at 9:04 am

      Thank you Tinu.

  4. Chinwe

    July 5, 2018 at 8:31 pm

    I was diagnosed with Lupus in 2016. Currently undergoing treatment at LASUTH Ikeja in the rheumatology clinic. The doctors there are very competent. I would like to joined the lupus support group but the website seems to be faulty. I could not make a comment on leave a comment page

    • Bright Okafor

      July 6, 2018 at 8:45 am

      Hi Chinwe. So good to hear from you. I receive treatment at LASUTH too. Please do send me a mail. [email protected]. Hope to hear from you. Cheers.

  5. Chinwe

    July 5, 2018 at 8:34 pm

    Please how do I join the lupus foundation. I am currently undergoing treatment for SLE at LASUTH Ikeja

  6. Dunnes

    July 6, 2018 at 7:28 am

    This is an inspiring story which I totally relate to. Autoimmune conditions are horrendous! I know this. I was diagnosed with Systemic Sclerosis (Scleroderma) about 15 years ago. Each day is a battle in which anything could be the weapon of this hydra-headed opponent. I do hope someday real soon, the cause/trigger is found. Keep being brave warrior, keep fighting. YOU WILL KEEP WINNING!
    And to those who’ve lost someone to lupus, accept my heartfelt condolences.

    • Dee

      July 6, 2018 at 11:41 am

      I was thinking about it this morning. There is a huge trigger and only God knows what it could be. One of my triggers is plantain imagine that. Something i can eat for breakfast, lunch and dinner. I have stopped eating it however at least for now lol but its still there so I know its something I am doing, or not doing or have done in the past or did not do.

  7. Otis

    July 6, 2018 at 8:19 am

    I am lucky to be a friend of bright okafor, despite the fact that I am 5,000 mile far from her, I always carry her in my heart. I got tears rolling out my eyes after reading this… she is a true warrior, strong. May Jehovah always give you the strength beyond what is normal to carry on.

  8. Las

    July 6, 2018 at 10:46 am

    Thank you for telling your story bright. How can I contact you? Thanks

    • Bright Okafor

      July 6, 2018 at 11:30 am

      Hello Las. thank you for reading my story. Please do send me a mail [email protected]

    • Bright Okafor

      July 6, 2018 at 1:13 pm

      Thank you for reading Las. PLEASE do send me a mail [email protected]. Hope to hear from you.

    • Las

      July 9, 2018 at 11:18 am

      Sure, will do. Thanks

  9. Dee

    July 6, 2018 at 11:37 am

    Lupus sucks. I am 32 this year and I have been living with SLE since I was 17. I was diagnosed right after secondary school. I remember being so excited to graduate and looking forward to independent uni life when this happened. God has been faithful and my parents well informed and able to cope with the medical costs. I know your pain Bright. We are a lot living with lupus, if you saw me you wouldn’t even know and I am not ready to go public yet. Chin up Bright, Ill send you a message so we can connect. There are a number of things that have helped me since my journey began. We will overcome definitely by his Grace.

  10. Eno Ekanem

    July 6, 2018 at 1:16 pm

    Dear bright, Thanks for sharing your story, It’s really inspiring and touching.
    You are indeed a fighter and an amazing being. Knowing you is one of the best thing that at ever happened to me. u re brave, strong, humorous, a bit shy?, caring, u always look out for others just to make sure everyone around you is fine ?, u re indeed a rare gem ? that can’t be replaced. Keep the hope up and alive, continue being strong for yourself and for ur loved ones. God got you big dearie! Heaven knows best… My super hero ? the one and only beautiful lupus chick, ever gorgeous orobo ?? u re a WINNER!! Kip winning, kip living!

    From eno with love ???

  11. Doctor

    July 6, 2018 at 10:27 pm

    I just graduated from medical school. I read about all these autoimmune conditions, but no where does the textbook describe the type of pain or suffering people go through. I am very moved by your story and I pray God gives you the strength to carry on.

  12. Idanesii

    July 7, 2018 at 2:41 pm

    I love you Bright Okafor for sharing your reality. It is not easy to come out to say this. I’m super proud of you

  13. Franklin Nwachukwu

    May 31, 2019 at 9:36 pm

    God got you dear …..continue been strong ??

  14. A.K 247

    June 1, 2019 at 4:24 am

    Bright, I have tears in my eyes reading your story and writing this. I couldn’t have imagined what you are going through beneath that smiling, bright countenance of yours. You’re always on the bright side of life. Intelligent, cheerful,caring (do you still remember the food you made for me last Residential?)?. That is Bright for you! It pierce my heart to your condition, but I take consolation in the fact that you have not allowed it to dampen your enthusiasm for life and for living. You’re a fighter, one of the few I connect with. You shall overcome this In Sha Allah. I gat your back. Cheers dear

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