The beginning of my journey with lupus

2012.03.28

The beginning of my journey with lupus

7 years ago I lived a normal healthy life .I was a very outgoing and active person. Then suddenly I started not feeling myself. I had headaches, had memory lapses, felt tired all the time and lost a lot of weight. I also had lots of mouth ulcers which made it very difficult to eat.

I went to see my local doctor who referred me to a physician for tests. I was admitted   in hospital and they ran all sorts of tests like meningitis, drugs etcetera but they couldn’t find a diagnosis.

In the mean time I felt like I was losing my mind .At 1 stage I couldn’t remember my own son which was of course  very sad for the both of us My husband and family were all very baffled and worried that the doctors count find a prognoses. I had 2 seizures which I could not recall and eventually after almost 2 months in and out of hospital   a Neurologist recommended a lupus tests.

When I received my prognosis I said to myself I’m going to fight this dreadful disease.

I was then diagnosed with Neuropsychiatric lupus “lupus of the brain.” Luckily I was familiar with the disease as a friend of mine has discoid lupus “lupus of the skin”

Since then my life has never been the same. I was transferred to the lupus clinic at

Groote Schuur hospital. I had to take so many tablets like steroids which have

A lot of side effects .I gained + - 30kg.My face blew up and had this funny shape which is called

The moon faces .All the tablets I took daily made everything I ate taste like rubber.

The professor at the lupus clinic was recommended Chemo therapy as the steroids couldn’t supress the lupus. Chemotherapy was the worst thing ever and I wouldn’t wish  it upon my worst enemy. I received chemotherapy for a whole year. And the side effects were the most horrible experience.

I shed a lot of hair and was sick for days on end. The 1^st time I started shedding hair both my kids was in the room with me and I had to keep my tears in and had to keep myself strong not to let them see how sad I was. From the beginning I said to myself I’m not going to let lupus take over my life after all I have lupus and lupus doesn’t have me. I had to be strong for my family especially for my 2 kids that were still very young 10 and 14 years old. It was very difficult for them to witness the physical changes I went through. Sometimes when I use to look in the mirror it was like someone else staring back at me

At this stage I was off from work for months .I did a lot of research on lupus. I then could educate my family and friends about lupus. After being at home for almost 7   months I went back to work. Being at work wasn’t always easy for me but I had to do something to occupy my mind.

Will continue

Having lupus is definitely not a walk in the park but more like riding a roller coaster