I started this post a few weeks ago, and I have contemplated writing it in many variations, deleting and then adding. I just could never find the words that seemed to put this into perspective for me. My mom has had an auto-immune disease for more than 11 years, Psoriasis, psoriatic arthritis and Rheumatoid Arthritis. I have not lived with my mom since she got sick and I have never really understood the excruciating pain she was in. I always knew when it was a bad day and a restless night, but could not fully understand her pain until NOW.
I have Lupus. Many people have had Lupus or some form of auto-immune disease for a lot longer than I have. I am in no way an expert and I am still researching every symptom, trying to understand if this is part of this disease inside my body or not. It was not part of the plan when I woke up a year ago.
I should start at the beginning. We were forced into a new direction because of the COVID-19 pandemic that hit South Africa and the rest of the world at the beginning of 2020. At the time life was hectic. We had our own business with just under 20 staff members. After the pandemic like so many other businesses in South Africa, we could not get funding and our business folded. So many people lost their jobs, and we sold the last of what we had to pay salaries but when we had nothing left to sell, we had no choice but to give everyone the bad news – we had to let everyone go.
We were devastated, we had lost everything. My medication was so expensive and what we thought was a nest egg was no more. As parents who looked after our children for so many years, we had to now look to them for help just to eat. We needed a home, and we needed it fast. After a lot of prayers, a door opened in the form of all things, a sailboat.
I cannot tell you how this came to be. We have never sailed in our lives. I have always dreamed of living close to the ocean but living on the ocean sounded so far out of reach. We didn’t think that this was not something that ordinary people like us could accomplish. Especially people with no money. In our younger years, my husband and I had been on motorboats, but sailing sounded ridiculous, but oh so wonderful. She is a 34-foot sailboat built by Gib’Sea in 1984. She was old, and not very well looked after, but we thought she could be a home for us and at the time that was what we needed.
It sounds so idyllic, the water beneath you the wind in your hair and for little over a year it was. It feels like yesterday that I was swimming every morning. I love the water and diving off the stern of the boat was as close to me being an adrenalin junkie as it was ever going to get. I loved long walks on the beach, we sailed up and down the South African Coast and I got to see more of our beautiful country than I had in my entire life.
My cancer journey started as a young mom, taking up most of my children’s childhood, I also suffer from epileptic seizures that started after I had a stroke about 10 years ago. It has been up and down with my health and the medication is very expensive, but without the medicine, I cannot function. We stayed confident that God would heal me, and that the burden of medication would soon be over.
Despite our financial difficulties, we have a dream to leave South Africa and sail to the Mediterranean. I want to see Israel walk the town of Galilee and swim the Jordan River and then follow Paul’s footsteps as he took the gospel of Jesus Christ to the rest of the world.
Despite what the world said, despite what our bank account looked like, and despite the medical issues I wanted to go walk where Jesus walked and see the promised land. I wanted to call those things that are not as if they were.
We were getting things ready to leave South Africa. Despite some trepidation, we really didn’t think we had a choice to get the vaccine. We started the process by getting the first Pfizer vaccine on the 6th of August 2021. When we left the pharmacy that administered the injection, I had pain in my shoulder and Andre was 100%.
I was so jealous of him because by the time we got home, I had pain all over. At least it was mild and not too bad, so I got into bed to sleep it off. The pain eased a bit after a few days and just left my hips and hands still in mild pain. I decided to go and see a doctor and the injection he gave me fixed me right up. I was pain-free and so relieved.
We got the 2nd injection on the 7th of October 2021. All the doctors and the staff who administer the vaccine assured me my experience was normal and that the vaccine was safe. After receiving the vaccine Andre and I both had some flu symptoms and were laid up in bed for about 3 days. It was wonderful. The side effects of the vaccine were not bad, and we watched movies and really enjoyed the time off. I felt a niggling in my hands on the 3rd day but nothing an anti-inflammatory didn’t fix.
We decided to sail to Dassen Island the day after and start to make our way towards Durban. We have family we hadn’t seen in so long and we really wanted to give out some hugs before coming back and finishing off our arrangements to leave. The sailing to Dassen Island was amazing we started seeing Whales about 4 hours out of Langebaan. I was ecstatic and grabbed a phone so that we could start recording this amazing sight before us. I sat on the foredeck the rest of the way. Overjoyed and really looking forward to the voyage ahead of us.
The water at the entry into House Bay at Dassen Island was a bit rough but when our anchor was out, we sighed a sense of relief. Shortly after our arrival at Dassen Island, I told Andre that I needed to go lay down and I started feeling very sick. Before dark, I was in what looked like a very bad allergic reaction.
By the time morning came my skin was on fire, I was itching and burning and contact with the sun was unbearable. Andre wanted to turn around immediately and go back to Langebaan to get me to a doctor. I thought it was just an allergic reaction and it would soon clear. The rest I would say is history. We returned to Langebaan when the “allergy” did not clear up. I was feeling really sick.
It turned into my worst nightmare. I thought this was because of the vaccine but my doctor was sure it was my seizure medication and told me to leave them. I started getting very bad seizures and none of the symptoms improved after three weeks, I had no choice but to start my medication again. We tried to convince the doctors that the vaccine had something to do with it, but it got to a point where I didn’t care how I got it anymore. I just wanted the pain gone, I wanted to go out into the sun. I would settle for being able to open a tub of butter or fasten my clothes. This thing has destroyed our lives. It ended up with me laying on my bed in the dark naked as any touch to the skin was excruciating. My joints were in so much pain that I could not use my fingers. My life had turned into a nightmare, I just wanted to wake up and this was all over.
I was embarrassed to tell anyone how do I explain this, what is this? How do I get this out of my head? I lost friends because I couldn’t type on my phone, the light was creating so much pain I couldn’t handle it. I became depressed. As a pastor, I had people who needed counselling and prayer at a time when I didn’t know how to pray for myself. Our time spent sailing from place to place allowed me to meet and pray with so many people.
I soon got an excruciating pain in my chest, and I thought I was having another heart attack. My husband was so hopeless – the added illness had become too much we just couldn’t do it anymore. Finally, the results were back – I had Lupus. We didn’t even know what Lupus was. This was an illness we had never dealt with before and didn’t know. After much research, we realised what I had, and what we were in for, and I started joining Lupus groups to see what people had been dealing with.
In the meantime, I was stuck indoors locked up on a small boat with no protection from the sun outside. I thought that cloudy days would be a good day to go for a walk, but I was wrong, everything I tried has put me into one flare-up after another.
The world is still broken, and I had promised God that I would dedicate my life to serving Him. It meant the good and the bad. The only time I left the boat was to go and pray for someone, I wore my thick jacket and long pants to cover my skin. I was overheated and treading water. Every time I would venture outside to go pray for or counsel someone, I would break out into hives. My skin would break, and I struggled harder and harder to pull myself back onto the boat.
I am hiding in the boat all the time – not hiding from the world – hiding from the sun. I had a full-blown flare-up that lasted for a few months. Speaking to people or seeing them was out of the question. My body was swollen, I was picking up so much weight and I had days where I was feeling so sorry for myself. I had this hidden disease that I couldn’t understand. It took me longer and longer every morning to stand up, the pain was so bad that I wanted to die.
I was so sad when Andre could go outside, or when he stood on the boat and caught fish. I would think about how a few months prior I did that. I miss watching the water. I miss swimming in the ocean. I miss walking in the sun. I miss people. I miss my husband. I love sitting outside in the evening after the sun is gone and I grab every moment that I can, but my body started fluctuating from one extreme to the next, I would get very hot or very cold and each had its own set of new symptoms.
I still blogged daily, but it changed from telling stories about our sailing and taking pictures of everything I could see to how much God is alive despite what we face. These blogs kept me alive; it was all I could do until my hands would pain for hours every day. Hours could turn into days. Those blogs would take longer and longer to get out. Normal was no longer normal. Financially things were coming down around us and an Auto-immune disease has decided it needs another victim.
Do I know Lupus? No, I don’t think I do. What I can say though is that Lupus thinks she knows me. She knows what part of my body she can attack next. She knows what she is doing and what this brain fog is doing to me, she knows how this extreme exhaustion stops me in my tracks. She knows that when I resolve to have a better day, that excruciating pain would turn me from resolve to laying in the foetal position crying like a baby. I cry not only because of the pain, but the memory loss on top of my already lousy memory loss, the sun, fatigue, the butterfly rash you paint across my face, my swollen lips, and my swollen eyes. Let’s not even talk about the skin lesions all over my body or the itching or the fact that my body is now allergic to everything, food, dairy, wheat and even the sun or fluorescent lighting. What is UP with that? Is that just another slap to rub in how much she now controls? Stress has always been an issue for me but let’s throw lupus stress into the mix because that’s how you roll.
Do I know you, Lupus? No, I don’t because you change and always have something new to add on today, tomorrow I don’t know when, but I know it’s coming because that’s how you roll. You don’t play fair, you don’t give any warning, you come from nowhere infect as if you enjoy it, unpack your bags, and move in.
Do I know you? No, I don’t, I didn’t invite you I didn’t even know your name! Lupus you are not my choice, you didn’t only make me sick, you stole my light, you ripped away my ability to work, to function, to live, my will to live. Lupus is what they call you, I call you hell.
Lupus you are not a dear friend that I want to hug and thank for our year together, you are another cancer I want to remove. I want to pull you out of my DNA. Cell by cell. You rot from the core, but you won’t rot me.
Lupus, Do I know you? No, I don’t but I know my Jesus and that is enough for me.
I must renew my mind, and stay focused on Jesus because if I don’t it will swallow me. It will take me, and I serve a God that has said in His word that life on earth does not come without tribulations. If I am to follow Jesus, if I am to walk the path, He has shown me, it will be hard, it will be tough. But if we only lived for easy, I would not have experienced what I have experienced in my last 2 and half years… God did not call us for easy, He called us to live for Him, my life is not my own, I am just passing through this world. My destiny is heaven bound.
He performs wonders that cannot be fathomed, miracles that cannot be counted.
– Job 9:10
It might be hard right now, tomorrow I will stand up and walk, I might need to lie down the day after. But I will not stay laying down and that is what I want you to know. I might not be able to do what I dreamed of doing or live how I dreamed of living, but I will not lay down and give in to the pain or give in to the humiliation of sometimes looking this bad. I will rise because I am the daughter of a King and Lupus will not beat me.
