I almost died because I was in denial

Health: Evelyn Ogolla during the interview at her home Lucky Summer, Nairobi. ON 21/05/2019( Jenipher Wachie, Standard)

As the lupus awareness month ends, Evelyn Ogolla, 30, talks about her battle with the disease which made her visit the hospital countless times.  

 I was first treated for a sore throat in October 2016. The antibiotics I was given at a local chemist did not help much. A few days later, when I was still battling the sore throat, my whole body started swelling. I also developed a rash that ran across my nose and cheeks. I would later learn that it was a butterfly rash that is common in people with lupus. The developments were shocking considering I had been in perfect health all my life. All this started when I was at a good place in my life. I was two months into marriage and in a fulfilling career as a pharmaceutical technologist. To crown my near-perfect life, I was also indulging my love for basketball.  I was truly happy. Then the endless trips to the hospital started, and life as I knew it, changed.  

The following month my legs, arms, stomach all got swollen. And I still had a sore throat. My hands had what looked like burn scars. I underwent some tests, even an X-ray at the hospital but that did not immediately point to any particular health complication. Further tests conducted by a dermatologist would reveal that I had brucellosis. However, the medication I was given for the brucellosis didn’t seem to help.

Endless pain

In January the following year, when I couldn’t take more pain, I visited a gastroenterologist and I was tested for ulcers. Once more, the results were negative. Doctors didn’t know what to treat me for anymore as nothing came out of the medical tests. I was in a lot of pain. But what was most frustrating is that I did not know what was happening to me. And with rashes and wide patches all over my face, arms and legs, I was developing self-esteem issues. Additionally, I struggled to hide my skin which had become grey. I had to go on leave for the better part of 2017 to wrap my head around what was happening to me. Even then, I was too fatigued to work. I found myself sleeping everywhere, night and day, because of fatigue.

I visited a chest specialist the following month.  At that time, I was coughing endlessly and I was very wasted. After listening to my story, the specialist asked me three times whether I had any deadly disease. He even pulled my sister aside and asked her the same question after I told him I hadn’t been diagnosed with any deadly disease. That day, the specialist referred me to another hospital where results were negative for all the tests they conducted.

Medics at the facility also noted that I kept losing blood mysteriously after every transfusion. The hospital also recommended biopsy tests for cancer. Samples were sent to South Africa and Dubai for analysis and I left the hospital after two weeks. The tests still came out negative.

About a week later, I was admitted at Nairobi Women’s Hospital with nose-bleeding. No first aid could stop the bleeding. I was very weak. I had also started losing hair on my head. The hospital referred me to a dermatologist where a series of tests revealed I had lupus. Having researched on the condition during the short time I suffered one mysterious ailment after the other, I understood the magnitude of the medic’s pronouncement. I found it hard to believe that I had an untreatable complication that manifested itself in a million ways. Even then, I received counseling after with I was put on medication. I was told that with proper medication and a few lifestyle adjustments, I would lead a fulfilling life. But I heard nothing of it. I was in complete denial.

Healing by prayer?

I left the city a few days later and I went to stay in Nyabondo where I thought I would find the peace and quiet I needed to pray and fast until I could get better through divine intervention. I did this for nearly a month, a period in which I also stopped taking my medication. At this time, I ignored my persistent diarrhoea. I was unwell to the point of being assisted to sit up, let alone get from bed and walk on my own. Still, I ignored my medication. Then one day, I collapsed and regained consciousness some two hours later in a hospital.

It was only after collapsing that I accepted the fact that my life would be pegged on medication. I came back to Nairobi where I resumed my medication and tests. I stopped playing basketball following the doctor’s instructions to avoid the sun. I also avoid strenuous work and only go to work when I am less fatigued. The steroids we take are responsible for the fatigue.

It could be worse

I thank God that my lupus isn’t that severe. In some cases, the condition affects vital body organs including the heart, liver and the kidneys. Many people in my support network of lupus patients are always in hospital treating one vital organ after the other. But all my vitals are okay. I only have a problem with keeping my blood levels up. I can easily do this with iron rich foods like liver and green vegetables. But pain can’t be avoided. In fact, it was only during the first six months of my pregnancy last year that I didn’t feel any pain.

My husband is my greatest strength. He has on countless occasions bathed me and dressed me when I was too sick to do any of these things on my own. Besides the wider family and my boss have been so understanding and supportive. I get moral support the Lupus Foundation of Kenya. It is where I interact with people who have lupus and their caregivers. It is a place where you get to know that you are not alone in the struggle.