Saturday, 11 August 2012

The power of duah/prayer

We are in our last few days of the Holy month of Ramadan.
I feel so sad because I have fasted 6 years ago last. I so much wanted to see if I can fast
this year but unfortunately I’ve been struggling with Bronchial Pneumonia for the past 3 weeks.
I was admitted to hospital on 7 August and was on an antibiotic drip and oxygen for 3 days.
Chest is much better now Alhamdulillah. The power of duah/prayer is truly amazing.
The Almighty is control of everything and we can only appeal to him for help.
Especially during this holy month of Ramadan He is most merciful and forgiving.
I ask The Almighty Alllah to accept  all duahs/prayers that is made for me and by me.
And I ask The Almighty Allah to grant my family and friends lots of health and bless them all abundantly.
In Shaa Allah

Saturday, 7 July 2012

If first you don't succeed,try again and again.

Yes I know I've made my  last entry on 1st June but .June was a  kind of a rough and stressful month for me but ended on a positive note. I received the results of my kidney biopsy. Lupus is now active in my kidneys too. There is a possibility that I   have to go for Cyclophosphamide “chemotherapy “to suppress the lupus. The after affects from Cyclophosphamide is the worst ever. The endless day of vomiting and feeling ill .It is something I wouldn’t wish upon my worst enemy .But if it takes that to suppress the lupus I will have to go for it.
The last few weeks was quit hectic for me as I was busy with my appeal for medical board application. And Algamdoelilaah with the Koedrat of The Almighty I won the appeal. Momentum approved my application. I’m now officially medically boarded.Which means I will now still receive the benefits as before and I am still in a medical fund. With lupus and any other dreaded diseases it is very important to be in a medical fund. I’m now just waiting on  the Group life which is with Sanlam for an outcome. I am scheduled to go for a three hour assessment by their clinical Psychologist and her findings will determine whether it will be approved or not.
Due to the cold and wet weather I’m in constant pain especially early mornings and late afternoons. Even though it’s sometimes very bad I try not to let it get to me.
Now that I won the appeal it feels like a heavy load was lifted form my shoulders. I feel so relieved and content and I can now take on anything the world throws at me even chemotherapy   J lol
These last few months I’ve learned not to give up or give in. We must fight for our rights and for what It is due to us and if at first we don’t succeed we must try again.

Friday, 1 June 2012

sick and tired of being sick and tired :(

Today is one of those days that I wish I can wish lupus away L
Feels like the universe is working against me.
Feeling down physically and emotionally.
So much pain lately.
Trying to cope.
So tired of being sick and tired

Friday, 25 May 2012

That’s life with Lupus….. Always full of nasty surprises but The Almighty knows best everything happens for a reason.

Friday 2012.05.25
Yesterday I was   discharged from hospital after being admitted for severe case of bladder infection
on Monday. My day started as normal with the usual stiffness and pain of the joint but nothing
Major to be alarmed about.  Suddenly at about 10H00am I started feeling a pain in my lower back.
Didn’t take much notice and just went on with my chores .Then the pain became worse and 
I went to the toilet to relieve myself and I discovered I couldn’t pass urine.
I then drank as much water as possible but still I couldn’t relieve myself.
The pain became so unbearable and I didn’t know if I should stand, sit or lay down.
I began to panic because I didn’t know what was causing this severe pain.
I phoned my Nephrologist and he told me to come to his rooms.
My husband took me to Gatesville Medical Centre but with the pain the ride to the hospital felt like forever. When we eventually arrived at the hospital the pain was so bad that I couldn’t even walk to the doctor’s room. My husband had to push me in a wheelchair.
I was examined and was admitted immediately with a severe case of bladder infection.
I was placed on a strong dose of antibiotics and pain killers. The nurses also inserted
a catheter so that I could relief myself. And amazingly after it was inserted and I relieved myself 
the pain slowly subsided. Several blood tests were run and the results showed that I’m having a flare.
Lupus is causing havoc in my body again. Nephrologist liaised with my Rheumatologist
And it was decided that I must go for a kidney biopsy to check whether there is any activity in kidneys. I hope and pray that it’s not the case. So I need to be back at hospital on 5 June.
Amazingly with the Koedrat of The Almighty I never had any joint or muscle pain whilst
in hospital. But then yesterday afternoon the pain started to hit me with a bang again. Fibromyalgia and Lupus competing against each other .The one is trying to give me more pain than the other.
That’s life with Lupus….. Always full of nasty surprises but The Almighty knows best everything happens for a reason.
Shukran/Thank you to everyone for all their well wishes and duahs/prayers.

Friday, 18 May 2012

Tired of being sick and tired :(

With lupus your moral can hit bottom ground from sky high in a wink of an eye.
Just Wednesday and Thursday I felt like I could take on the world.
I had two AMAZING day Agamdulilaah.
Suddenly yesterday everything hit bottom ground again.
Fibromyalgia and lupus with its pain hit me with a big bang.
The pain became so severe and my best friend depression tagged along too.
I am not questioning The Almighty for what He has bestowed upon me but  
Sometimes like yesterday and last night it all got too much for me to handle.
The pain was so bad; it felt like by body was on fire.
My fingers were so stiff I couldn’t even keep my cup of hot chocolate in my hands.
I am so tired of all this pain
I am so tired of the fatigue
I am so tired of being depressed
I am so tired of being frustrated
I am tired of smiling when I feel like crying. 
I’m tired of pretending that I have everything under control.
When I’m not even sure whether I’m coming or going.
And most of all I’m tired of always pretending to be OK when I’m not OK.
But I know I will be OK again if not today maybe tomorow or the day after.
TAWALKALTOE Allah ......Allah knows best

Wednesday, 16 May 2012

I'm on top of the world :)

If only all my tomorrows can be like my today is and my yesterday was.
Can’t remember when last I felt so good emotionally, mentally and physically.
I wish I can capture these pain free moment so that it can last forever.
These past two days I feel and felt like I’m on top of the world, I feel like I can take on
what ever life throws at me. If only I can have more of these days  my   life would  be so much pleasant and bearable.
I pray that The Almighty grant me many more days like today and yesterday.
In Shaa Allah

Thursday, 10 May 2012

Lupus awareness month

May is lupus Awareness month and today is World Lupus day.
I’m so touched to see the amount of support I’m getting from my family and friends.
The smallest gesture is so much appreciated. Just   by wearing something purple today or during this month or by posting something about lupus on their face book means so much to me and it is very
Much appreciated.
Lupus with all its negative effects did bring something positive in my life too.
I made so many friends “fellow lupies” through lupus support groups on face book.
We’re from all across the globe: from  South Africa to USA to Dubai .We might be from different
Religions, Cultures, Races and Ages but we all one” lupy” family cause we all have something in common LUPUS.
I want to thank everyone for supporting me in creating awareness.
May you all be blessed in abundance.

Friday, 4 May 2012

Superwoman and the Wolf "lupus"

Some of my family and friends have the greatest admiration for me and refer to me as a Superwoman.
But if they only knew all the emotions that I hide behind my smile.
The constant pain I’m enduring, the depression and fear, confusion and frustration and the uncertainties about the future.
For the battle that I’m fighting is not an easy one. It sometimes takes away all my fighting spirit.
But I’m trying to be strong because a strong woman won't let anything get the best of her...
Cause a woman of strength won't give in to her fears and  weaknesses. She will continue fighting.
That’s why I appeal to my Creator to grant me the  strength and courage to  keep on fighting my battle with the wolf “lupus” like a SUPERWOMAN would do!

Saturday, 28 April 2012

I still have so much to live for

Everyday I'm thankful  that the Almighty granted me another day with my love ones.
But I can’t stop wondering how my day is going to turn out because1 minute I  feel  I can take on the world and the next minute  I’m too tired too even breathe. And wonder where the pain is going to hit me or what name I'm going to call my kids by L
Sometimes lupus with all its side effects really hits me hard. I try to put on a brave face but when I’m alone, my emotions  of weakness and fear shows.
I still have so much to live for, so many things I still want to experience; I still want to see my son settle in a career and get married. And go dress hunting  with my daughter  for a matric ball dress. And of course fulfil the 5 the pillar of my religion and that is to go for Gadj to the holy city Makkah.
In Shaa Allah “God’s willing"
Life with lupus is tough and hard but I have to be strong and try not to give up but try to face each minute of each day that is granted to me and face whatever day the day brings for me.

Tuesday, 24 April 2012

Is my Angel realy 16 years old

This week started off on very negative note for me. My medical board application was declined.
But Tawalkaltoe Allah. He knows best. There are a lot of implications that goes with the outcome that is not favourable to me.The worst  one is I won’t have medical  aid anymore which is very important  for me for all the meds that I’m on and all the specialist that I’m seeing. It’s been a stressful few days for me and because stress is not good for lupus, I haven’t been feeling too well.
But today is a very special day for me. It’s my daughter’s 16th birthday.
So I’m just going to enjoy the day and forget about my problems. We are having a party for her friends. It seems like yesterday that I gave birth to this beautiful baby and today its 16 years later. She is now a pretty, loving and caring young lady. Mumtaz is not the average 16 year old teenager. She is much matured for her age. Because of my condition she never really had the chance to be a child. During the period I received chemo therapy she had to take over my role in the house.
Ever since I was diagnosed with lupus I could count on her help. Whether it’s with chores in the house or rubbing me out when I have severe pain or reminding of little things I forget.
She is truly a blessing and my guardian Angel.
The party went off very well .Even though I was totally exhausted and full of pain at the end of the night; it was all worth it for my Angel.

Saturday, 14 April 2012

Not to be able to remember your love ones

All at home snuggled up in bed with hot chocolate and watching the movie “The Vow”
The movie is based on a true life story. Due to the impact of an accident a lady sufferers head injuries. And loses her memory to a certain extend.  And as memory problems, confusion   and difficulty expressing thoughts is all side effects of lupus on the brain.
It made me think of what if I should ever lose my memory. I can’t even begin to imagine not remembering   my family and friends especially my husband and children. Forgetting all the wonderful memories we created and all the happy and sad moments we shared.
I can only appeal to my Creator and ask Him to increase my memory and to let me always remember my love ones.

YES. In some people, lupus can make it hard to think clearly or remember things well. It can even change a person's behaviour. Because these "invisible" symptoms tend to come and go, it can be very hard to tell if they are caused by lupus or by other problems. Friends, family, and co-workers also may have a hard time understanding what is happening.
How Can I Tell?
It may surprise people to learn that lupus affects the brain. Talk to your doctor about the following signs and symptoms of brain involvement: headaches; dizziness; seizures; stroke; problems with memory; problems with vision; depression (deep sadness, hopelessness, loss of pleasure); mania; schizophrenia; and psychosis (delusions, paranoia, hallucinations).
In addition to a physical exam and doctor's consultation, multiple lab tests may be needed to figure out what is going on. Other possible causes of brain changes, such as infections, drugs and non-lupus disorders, need to be considered too.
Is It Common?
Half of people with lupus suffer from cognitive dysfunction. Signs of this are confusion, problems concentrating or remembering things, and trouble sharing thoughts.
One out of five people with lupus have headaches, dizziness, memory loss, stroke, or mood swings that result from changes in the brain or spinal cord. These people have central nervous system lupus.
Many people with lupus suffer from severe headaches.
Nearly 1 in 10 people with lupus develop blood clots as a result of the ant phospholipid syndrome (APS), which can lead to stroke. Other serious problems include seizures, coma, inflammation of the spinal cord or brain's blood vessels, and paralysis.
How Is It Treated and What Can I Do?
The effect lupus has on the brain can range from small to severely damaging. A doctor can recommend a combination of treatments that include anti-inflammatory and anti-malarial medicines, blood thinners, and drugs to ease tiredness and depression, and counselling.
Often the symptoms of lupus in the brain cannot be seen or felt by others. This can be very frustrating both for you and for them. Let friends and family know how much emotional support and encouragement helps at these times.
S.L.E. Lupus Foundation
330 Seventh Avenue, Suite 1701, New York, NY 10001
Phone: 212.685.4118 Fax: 212.545.1843
"Never take family and friends for granted"

Friday, 13 April 2012

This poem I dedicate to my husband,children,family and all my friends!

If Tomorrow Starts Without Me

If Tomorrow Starts Without Me - David Romano

If tomorrow starts without me, and I'm not there to see,
If the sun should rise and find your eyes all filled with tears for me;
I wish so much you wouldn't cry the way you did today,
while thinking of the many things we didn't get to say.
I know how much you care for me, and how much I care for you,
and each time that you think of me I know you'll miss me too;
But when tomorrow starts without me, please try to understand,
that an angel came and called my name and took me by the hand,
and said my place was ready in heaven far above,
and that I'd have to leave behind all those I dearly love.
But as I turned to walk away, a tear fell from my eye,
for all life, I'd always thought I didn't want to die.
I had so much to live for and so much yet to do.
it seemed almost impossible that I was leaving you.
I thought of all the love we shared and all the fun we had.
If I could relive yesterday, I thought, just for a while,
I'd say goodbye and hug you and maybe see you smile.
But then I fully realised that this could never be,
for emptiness and memories would take the place of me.
And when I thought of worldly things that I'd miss come tomorrow.
I thought of you, and when I did, my heart was filled with sorrow.
But when I walked through Heaven's gates, I felt so much at home.
When God looked down and smiled at me, from His great golden throne,
He said, "This is eternity and all I've promised you,
Today your life on earth is past but here it's starts anew.
I promise no tomorrow, but today will always last.
and since each day's the same, there's no longing for the past.
But you have been so faithful, so trusting, so true.
Though there were times you did some things you knew you shouldn't do.
And you have been forgiven and now at last you're free.
So won't you come and take my hand and share my life with me?"
So if tomorrow starts without me, don't think we're far apart,
for every time you think of me, please know I'm in your heart.

Always keep me in your duahs/prayers

Wednesday, 11 April 2012

Surviving lupus 6 years

This month marks my   6th year anniversary  as a Lupus sufferer.
It has been a very bumpy ride but Alhamdulillah Allah knows best
And it didn’t just have negative impacts on my life but lots of positives ones as well.
This journey with lupus also made me a stronger person, physically and emotionally.
During the 6 years I made a lot of new friends. Especially Lupus sufferers that I met  on the Lupus support group from all over the world whom  became very near and dear to me.
I would like to say Shukran/Thank you to my husband and kids for all their love, support and most of their all patience.
And to my  siblings, extended family, friends and Facebook buddies Shukran /Thank you for all your support and for  always motivating me  and keeping me in your duahs /pray
I don’t know what is still in stall for me…..Or where to from here but  I’m prepared and ready to fight lupus with all my strength. As long as I have faith ,hope and strength I will not let lupus control me.  After all I have Lupus and Lupus doesn’t have me.
“Be content, for everything happens by the will and decree of Allah/God

Tuesday, 10 April 2012

My inspiration

Imtiyaaz and Mumtaz my reason  for fighting Lupus
The greatest gift a parent can give a child is unconditional love.

Monday, 9 April 2012

Winter is only on our door step but its hitting me hard already.

Winter is only on  our door step but its hitting me hard already.
For the last few days I woke up with a stiff and painful body almost every day. I’m Feeling tired and emotionally drained. Algamdoelilaah Shukr to The Almighty I’m at home so I don’t have to force myself out of bed. Sometimes I wish it can all just be a nightmare but it’s not and I have to deal with it. With all this pain and many negative emotions I feel like giving up this fight with lupus. But I try hard not to give in to these negative thoughts. To others it looks like nothing is wrong but inside I’m dying little by little. If they can only know the pain and agony I go through. I don’t know if the physical or emotional pain is worse. Sometimes I feel like I’m falling deeper in a hole and see no light at the end of the tunnel .I feels like my concentration and memory is also giving up on me. I feel like a prisoner in my own body. I try not to think about the pain of tomorrow but try to live just for today. Will I manage, will I cope. Family and friends look at me but they don’t really see what’s behind the smile.
I hate what I’m going through the pain, fatigue, memory lapses, depression and frustration.
But Allah Swt /God knows best

Tuesday, 3 April 2012

Shukran/Thank you to everyone for walking this journey with me

Before I had lupus…
I had never experienced the “lupus fog” like forgetting simple things.
I never had a problem forgetting my kid’s childhood and dear memories of my loving Mom and Sister that I lost .I was efficient and I had the memory of an elephant
I never felt constant fatigue and never suffered constant muscle and joint pain
I never felt so much frustration, anxiety, depression and mood swings
I never had to pull a chair to the counter to peel potatoes or onions.
I never had to sit and make Salah /prayer
I never had to feel guilty for not fasting the month of Ramadan/fast
I never had to tell my family and friends I don’t feel like going out
I never was too tired to have visitors and play the perfect hostess.
I was never too tired   to do things with my children like going to the mall/movies
I’ve learned to appreciate each and every moment or day I’ve felt well because I never know how soon that feeling will change.
I’ve realized that my kids really can help with chores and be independent
And that I have a husband, kids, family and friends that I can depend on.
And most of all I realized that I’m not alone in this battle,I am Blessed with supportive, loving and caring family and friends.

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.