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.

Is my Angel realy 16 years old

2012.04.20

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 16^th 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.

Not to be able to remember your love ones

2012.04.14

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"

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

Surviving lupus 6 years

This month marks my   6^th 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

My inspiration

Imtiyaaz and Mumtaz my reason  for fighting Lupus

The greatest gift a parent can give a child is unconditional love.

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

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.