I know how it feels to be able to participate in all possible activities during your childhood years and to excel and perform in everything you do. I also know what it feels like when all these things are taken away from you within moments, without warning and you are left with only the ability to participate in minimal activities. When merely getting out of bed becomes a challenge…
My name is Demi Nel and I am a Lupus Warrior.
This is my story.
As I toddler I always had extreme red cheeks but nobody had reason the suspect that there was anything wrong with me. During my primary school years, I constantly complained about joint- and muscle pains. Severe fatigue, headaches and abdominal pains occurred almost daily. Doctors never found anything wrong and it was attributed to growing pains and strains due to participating in all possible activities. Therefore, I continued to take part in as many activities as I could.
I was part of the Top 10 Academic group every year. I started playing hockey when I was 6-years old, played A-squad every year and was selected to play Eastern Transvaal hockey. I participated in Public Speaking, Eisteddfod, Choir and was part of the dance and singing groups of our school musicals. I was also part of the cheerleading squad that qualified for SA Championships.
It was early in my grade 8 year that things came to a point. I was at hockey practise when I lost consciousness. The coach phoned my mother and she arrived within minutes. I was awake by then but I was not feeling well at all. I was taken to the doctor and he diagnosed me with low blood pressure and exhaustion. A couple of days later the same thing happened and no specific diagnosis could be made. It was a very confusing time for our family. My mom saw a magazine which caught her attention. It said “Nine teenage diseases that your child could possibly suffer from”. The article spoke about a butterfly rash, painful joints, abdominal pains and skin lesions. It also indicated these symptoms are worsened by sun exposure. This could possibly be Lupus.
Once again, we went back to the doctor and requested a blood test. He requested a SLE test which came back negative. My symptoms however worsened to such an extent that my mom made an appointment with a Pediatric Cardiologist. She confirmed that I had no cardiac problems but I was extremely hypertensive. She gave me medication and did specialty tests for Systemic Lupus. These results came back positive and she referred me to a Rheumatologist. At this stage I found it difficult to keep up with everyday activities due to fatigue, pain, weight loss and seizures.
The Rheumatologist started me on a huge amount of medication and referred me to a Nephrologist and Neurologist. I had to see these doctors every 3 months. The side-effects of the medication was difficult to cope with. In the months to follow I had so many blood tests that I lost track of the amount of tubes that were taken. The medication did not have the expected effect and was changed often. The seizures increased and my lungs, kidneys and liver took strain. Hospital wards became my second home.
Through all of this I learned that Auto-immune diseases came in clusters and besides having Lupus I also have Bechet’s von Willebrands, Raynaud’s, Psoriatic Arthritis, Vasculitis and Sjogrens.
December 2013 I had to go for a kidney biopsy and due to the Von Willebrands I developed a hematoma behind my kidney. After the procedure I was unable to function independently. I needed help to bath, eat, dress etc. My family had to carry me everywhere and had to help me with everything. I could not attend school for almost 3 months. This was a terrifying experience and it was extremely hard for me and my family.
I continued my treatment but didn’t yield results. My hospitalisations became more frequent. Three days before my 17th birthday my doctor decided to start chemotherapy. I was horrified! I had to take chemo tablets – 7 at a time – once a week. I experience the most severe nausea possible and most of the time could not eat for 4 days after treatment.
The morning after my debutante ball I realized my hair started falling out. I had bald patches all over my head. After 4 months the chemo was stopped as my condition did not improve. It was the end of my grade 11 year and school became my biggest challenge.
I was then given the strongest immunosuppressant – which the medical aid did not cover for the first six months- and my parents had to pay for it.
During my grade 12 year I was chronically hospitalised and landed up in hospital in the middle of my final exams. I booked myself out of the hospital to write my exams. Only by God’s Grace did I pass gr 12 with 2 distinctions and gained university entry.
January 2016 I left home, bright eyed and ready to start my studies at NWU Potchefstroom. Nothing however prepared me on what was about to happen. Between January and September I was admitted to hospital 20 times. During May 2016 I had a “Youth stroke” which left me temporary paralysed and weak on my left. Luckily, I recovered fully.
On 25 September 2016 I was once again admitted with an infection and dehydration. This was the turning point. The night of 29 September, after visiting hours, I changed condition. It felt as if something was forcing its way out of my head. I was in extreme pain and could not stop screaming, my blood pressure was very high. My parents were phoned and they arrived at the same time than the Casualty doctor. I was taken for a brain scan and moved to ICU. The doctor suspected I had a stroke but there was no evidence on the scan. The conclusion was encephalitis.
The next day was my sister’s matric farewell but my parents stayed with me for the biggest part of the night. The afternoon of 30 September my sister surprised me on her way to her matric farewell. We were both in tears. It broke my heart that I could not be there to celebrate this day with her, as my sister and I are very close.
After a week in ICU I was discharged and continued with my studies. I’ve made a decision to stop my medication – although the doctor strongly discouraged me to do so. On 9 November I returned home from Potch to inform my parents that I’ve stopped my medication and that I will not be continuing my studies. I prayed for answers for a long time and I asked the Lord to either cure me or take me to Heaven because I could not carry on like that. I weighed only 43 kg at that stage. I continued to pray for only one day without being sick.
I started feeling better and by the end of December I went for my routine blood tests and was told that I’m in remission. For the first time in years I could function like a normal young adult!
By the Grace of God, I remained in remission for 9 months. I asked for one day, he gave me 274. In August 2017, I had setback and by December I was back on medication. February 2018, I started chemo again but stopped it after 7 treatments due to the side-effects. I was given new medication and I do not experience any severe side-effects at the moment.
Every new day is a surprise and a challenge as I do not know what my body will be up to when I open my eyes. Some days are really challenging while others are somewhat normal. Throughout this journey the only constant thing in my life was God and my wonderful family. It may not always be easy but I know above all that I am a Princess of the Heavenly Kingdom and therefore I trust God’s plan for my life.