Lupus won’t win: The journey of a 24 year old against all odds

 Fiona Waithira [Photo: David Gichuru]

In October 2015, at the age of 22, I was diagnosed with lupus- an autoimmune disease.

Before then, I had dealt with rheumatoid arthritis and rheumatic heart disease for 10 years. Looking back, I think I’ve had undiagnosed lupus for a long time.

 So the symptoms were blamed on the other two conditions.

When I was first diagnosed with rheumatic heart disease at the age of 12, I was put on penicillin injections. I was to be on monthly penicillin treatment till the age of 21.

However, I had such an awful reaction to the drug that they had to be discontinued after a year.

My left arm had started going numb, my knuckles were swollen, and I had frequent stomach-aches leading to more absence from school. I was also taking Brufen, which made the situation worse.

I went back for more tests and was then diagnosed with rheumatoid arthritis. I was 13 at the time, so the diagnosis was juvenile rheumatoid arthritis.

They couldn’t explain why I had the condition, because it’s mostly a genetic disease but there’s no history of rheumatic arthritis in my family.

I was started on non-steroidal anti-inflammatory drugs but they didn’t really help. I was still in pain and was skipping school a lot.

An endoscopy revealed that I also had peptic ulcers and more drugs were prescribed. The burden of buying drugs was heavy on my parents. I couldn’t take generic drugs, which made it even more costly.

But there was hope. I had been told that because I had juvenile rheumatoid arthritis, I would be completely healed by the time I turned 18.

A very noisy world

But that didn’t happen. I was still in pain and relying on drugs for relief. I was still in school so my attendance and performance were greatly affected.

 I couldn’t even sit up in bed for long. My social life had also shrunken to my family and a few friends. I also developed extreme auditory sensitivity.

Everything sounded too loud to me. I couldn’t even sit and watch TV with the rest of the family.

I had to stay in my room most of the time to avoid noises. But the doctors couldn’t explain my sensitivity. I have just learned how to live with it. I also started developing uncontrollable jerks.

 When I joined Nairobi University for a Bachelor of Economics and Statistics, the jerks and migraines became worse. I remember one day I got off a matatu at Odeon in Nairobi and instead of walking towards the campus, I walked towards Afya Centre. I was so disoriented that I had to call my sister to give me directions.

By the time I got to class, I was late, had a throbbing headache, and was fatigued. That was so alarming that we went to the hospital for more tests, which revealed I had complex partial seizures.

I was relieved that it wasn’t something like epilepsy. But the drugs I was put on barely helped. I had to change medication over and over.

No drug has ever fully worked for me. I always have a headache, only the degree of the pain varies. Sometimes it’s bearable but at times, it’s so bad that I have to stay in my room with curtains drawn.

How the lupus diagnosis come about

In August 2015, I started experiencing pain in my right hip. For a while, I self-medicated with painkillers and topical gels.

When I eventually went to the doctor, I had acquired a limp from the pain. After a series of expensive tests, I was diagnosed with lupus.

That shattered my world. I felt betrayed by God. I was prescribed more drugs which came with different side effects.

The seizures increased and my body grew weaker. By December that year, I was using a walking stick. I started physiotherapy but it wasn’t helping.

In January 2016 I was using a walker and in April I was wheelchair bound. I had just finished campus.

Thankfully my lecturer allowed me to work on my final project from home. My friends were getting jobs, moving out, enrolling for Master’s degrees, and dating. But I was stuck in a wheelchair.

I had up to three intense therapy sessions a week. The cost was Sh 3500 to 4500 per session, which my parents had to cough up three times a week, besides buying my medication, a special diet among other costs.

 But I wasn’t getting any better. In fact, I was losing so much weight that the doctors were worried.

In October 2016, I was feeling better and could stand and take a few steps using a tripod. But the progress was curtailed when I was prescribed hormonal treatment to correct a hormonal imbalance. I was soon back in a wheelchair.

Slow progress

Being incapacitated like that is the worst thing I have ever experienced. I had to rely on others for everything; from feeding me, bathing me, helping me use a commode, to turning me in bed. The worst was that I had to rely on others to clean me when I had my period. I felt totally stripped off my dignity.

I stopped the hormonal treatment and since then, I have been making progress. My best moment so far was when I took my first steps after a long time being wheelchair bound.

Walking again gave me a glimpse of hope that I could live a normal life again.

I still have difficulty breathing because I have inflammation of the rib cage. My tear and salivary glands don’t produce enough moisture, so I have to use eye drops and take more drugs to keep my mouth from going dry.

Because I am on so many drugs, I have also developed hypertension. In a night, I have to take at least 10 different drugs.

No insurance company wants to give me coverage, so we have to pay for everything out of pocket. It has been a draining journey financially, physically, and emotionally.

Life moves on

I have learnt to live in the present. I don’t stress myself about the future. However, I’m in the process of setting up an NGO to help other people with autoimmune diseases to buy medication at subsidised prices.

I also want to create awareness of autoimmune diseases. I currently blog at allthingsprecious.wordpress.com, and vlog on YouTube about my journey with lupus.

I have a Facebook platform named Autoimmunity Exposed. I want to go back to school and study fitness and nutrition.