Friday, 30 March 2012

I will not be responsible for my actions

Having a lupy day

Today is 1 of those days I wish I could wish  lupus away.
Having a not so good day today .Lots of pain and my body feels like a ball of fire.
Joints pain from lupus and muscle pain from fibromyalgia.
Makes me feel depressed and frustration. Weather plays a huge roll in my  day to day life.
Cold weather causes pain and hot weather and sun affects my head.
But that’s  life hey. ….There is  people worst off then me.
Tomorrow might be a better day for me In Shaa Allah/God’s willing

Thursday, 29 March 2012

Returning back to work

When I returned to work   I couldn’t resume my normal duties. Because of the lupus on the brain my concentration and memory were affected and I also had a problem with arithmetic.
I then had to do alternative duties which were also not easy. But I had to stay focus and I tried to do my work to the best of my ability. I was still receiving Chemo and was out of work a lot.
My superiors and co –workers were always very supportive and understanding.
As time went on the Lupus affected my joints and I was also diagnosed with fibromyalgia which was very painful and unbearable .The pain was and is sometimes so bad that I can’t keep a cup of coffee in  my  had  or cook a pot of food for my family. Especially during winter when it’s cold and wet the pain is worse.
During the last 6 years I was more out of work than in work due to constant pain and other complications to the lupus and the side effects of my medication.
After 23 years’ service and suffering with lupus for 6 years, my specialist recommended a medical board. I am off sick for almost 6 months now and waiting in anticipation for the outcome of my application which I hope the findings will be favourable. Now that I’m at home I feel much more relaxed ad stress free. And stress is my worst enemy as like the sun it aggravates the lupus.
The last 6 years was not easy for me and my family but I believe that The Almighty Allah Swt /God won’t give you a burden too heavy to carry. I feel I was given this disease for a reason. It made me a stronger and more God conscious person. I sincerely believe that if you accept whatever Allah Swt /God bestow upon you, whether it’s an ailment or a problem it becomes so much easy to handle.

Memories of my time at work

Pictures before and after lupus

Wednesday, 28 March 2012

The beginning of my journey with lupus

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 1st 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

Friday, 23 March 2012

A long journey but we never walk alone

What is Lupus?

Lupus is an autoimmune disease where the body's immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints,skin, kidneys, blood, the heart,brain and lungs. Under normal function, the immune system makes proteins called antibodies in order to protect and fight against antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue. This leads the immune system to direct antibodies against healthy tissues - not just antigens- causing swelling, pain, and tissue damage.