I Am A Lupus Warrior: A Personal Story

This is the real-life story of Samantha.  A lupus warrior, who overcame a diagnosis. Today on World Lupus Day she celebrates 12 years of not just surviving, but thriving. 

I am Samantha. I was born in Durban, South Africa and in 1996 I moved to Johannesburg. After I qualified in Cosmetology I worked in several salons, then owned my own children’s salon for a few years.  I studied Financial Management and Corporate Governance at Wits University and am currently busy with an MBA at Henley.

My family consists of my husband and 5 beautiful, strong children aged, 23, 20, 14, 5 and 3. I love being a mother; my children teach me something every day. I have been married for 24 years and my husband is my biggest cheer leader, who helps me reach my goals with lots of love and support. I have been in Corporate Governance for more than 17 years and am a Director and Co-owner of a Civil Engineering Company in Johannesburg.

My love of music keeps me happy and allows my creativity to expand.

A summary of my journey

As I am about to celebrate my 12th year of living with lupus, I can confidently say now… I AM A LUPUS WARRIOR!!

I was diagnosed in 2006. After a meeting with my Rheumatologist and Gastroenterologist on the same day, I was twice hit with distressing news: I had lupus and a carcinoid tumour in my colon.

I left the doctors’ rooms in a state of shock and disbelief.

One day a year before, I had woken up with severe pain in my joints and could not move without it hurting badly. Although it was unusual in the extreme, I thought it would pass and  I still went to work. However, when I arrived at the office, just walking up the stairs was awfully painful and I almost didn’t make it up without having to sit down. The next day I went to my GP and he sent me for numerous tests.  Alarmingly, it would take about 7 months for the diagnosis, which as I mentioned,  came as a complete shock to me. Click here to find out more about this condition.

My early years after being diagnosed with lupus were confusing and very difficult.

I spent most nights in hospital, receiving a morphine drip. I was very weak and completely dependent on the doctors. Whatever they said to me, I believed. I took the medication they prescribed and slowly, but inexorably, deteriorated.

By 2009, I had lost myself.  I was also taking a Schedule 6 sleeping pill and when I read the side effects – cheerful things like it may cause death – I became increasingly concerned, but I didn’t know what else to do. I knew nothing about Lupus. I also had no clue what was happening to my body or what it expected of me. I was bed-ridden and completely disoriented. My moods were all over the place. A great distress to me was that my close family and friends were gossiping about me, saying I was bipolar and not ill. This broke my heart. I had become a sad and lonely person, seemingly at war with myself.

After 3 months on the lupus medication, I decided to stop taking it. I could not watch my babies grow up around me and me not be a part of their lives. It was a very difficult option. I locked myself in a dark room and weaned myself off the medication. I cried and rolled on the bed in agony, but somehow I managed to get rid of them. Lupus came into my life so unexpectedly. Suddenly I had to decide to choose life – or take the medication with the negative life-changing side effects.

Then late in 2010, I went to a clinic in Sandton for a cellulite treatment. I had put on so much weight from the steroids, it was unbelievable. I could not recognize myself. Now, besides the pain and suffering from the lupus, I was fat and ugly. A doctor saw me and asked about my medical history. She said they would have to run some tests to see what was going on with my body, instead of doing a cellulite treatment, which she said may not work. From that day, with advice from this doctor, I started a new more holistic journey to better health.

After the blood tests were done, I started my integrated medical treatment, which is a combination of holistic and homeopathic supplements. Initially it was very difficult, as I had to learn to take something like 20 tablets a day. It took me 6 years to understand how the supplements and diet change were working. But ultimately, I was living a better-quality life; my days off sick became fewer and now I can sense when I am getting ill and can try address the situation before I end up in bed for days.

After all my near-death experiences, I knew for sure God must have a bigger plan for me. This has given me a reason to want to help at least one person to change their lives.

Family support

The support and understanding from my family and friends was crucial to my treatment and survival. Naturally, when you cannot see something, it is a bit of a mystery. And so it was very difficult for my husband and children to understand my invisible disease. However, over time, my learning about Lupus and explaining it to them as best I can, has made it easier for them to support me. My husband is always watching out for me. He constantly checks the food I eat is dairy and wheat free, which cause high inflammation in my body.

hiking for lupus | Longevity Live

He has always supported my personal training regime and my quest to climb Mount Kilimanjaro which I did in 2016 to celebrate my 10th year of living with Lupus. It has not  been an easy journey for my husband and children because, one minute I am fine and the next I am on oxygen. However, we try to make the best of each day.

Positive attitude and acceptance

I think, when I finally accepted I was challenged with this wolf (lupus means wolf in Latin), and after researching its effects, my journey became somewhat easier, although admittedly, I am very afraid and concerned daily about the possibility of leaving my family behind.

But I can do more and more in a day, I can take on physical challenges, which I could never do before; the acceptance has allowed me to be more. I am now training to climb Mount Everest in October and am so looking forward to fulfilling my dream of standing on the Himalayas.

Goals

Living with lupus has changed my outlook on life. I now constantly strive to find new challenges and regularly set goals. Goal-setting pushes me to prepare for them. Most are short term like plans for the next 12 months. I am also currently writing a book on my personal journey, so this is ongoing; but a real goal that I am steadfastly and resolutely working towards.

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