When SALIVA and TEARS becomes a huge problem in my life.

We tend to always take the little things in life for granted. I never knew my life would be so complicated without TEARS and SALIVA.

Lately eating has become a nightmare to me, I try to stay away from food which needs a lot of chewing. But it’s not always as easy and simple. I am refraining from foods that I love EG: fish, chicken, steak  etc. Even eating certain fruit and bread is also a problem. One of the diseases I have  called Sjogrens, causes my white blood cells to dry out the glands that produces moisture in my body. And to chew and digest any food you need your saliva. It also helps protecting the teeth and gums from bacterial infection, and it spreads the taste of whatever you eating around your mouth.So is basically it enhance the ability of the taste buds to detect the taste of food.Saliva also makes it easier to talk,a fact ask anyone who experience stage fright and the associated dry mouth while giving a presentation.It is the worse feeling ever.I am now looking at substituting my solid foods with healthy shakes,so that my body still gets the necessary nutrients and supplements it requires to function on a daily basis.

Never in my wildest dream ever thought I would miss my tears as I miss it today.

In the past whenever I you watched a sad movie or read a sad book,I would cry my heart out.Sometimes when I felt emotional or depressed, I could just have a cry and then I would feel better but now it is so difficult to deal with my emotions as I literally can’t cry.I see tears as the only emotional form that is real.Tears are the only thing that anyone can understand, see, or touch.But How do I express my joy,happiness,hurt,anger if I don’t have tears.

The one thought that is always crossing my mind is that what if someone close to my die tomorrow, how I will be able to express my loss.What if I get the honour to go perform Hadj or Umrah one day? People always  talk  about how they cry the first time they see The Holy Kaabah and how they cry The day of Arafat.Will I be able to experience all that emotions too?

Allah Swt knows best,May Allah Swt make it easy for all of us.
Ameen In Shaa Allah.

Live your dream before you wake up and realise you lived but you weren't realy alive

When we are young and carefree we have dreams and set goals for ourselves.We have this idea or picture of how our lives would be like in the future.We dream about  having the perfect partner, a flourishing career,a house with a white picket fence, a fancy car and a beautifull family.But as time goes on and  we grow older we realize life is far from the perfect picture we had in mind because we are so busy trying to create our dream that we forget to live our dream.Make sure you get to live your dream before you wake up and realise you lived but you werent realy alive.

Emotionally and physically I’m not in a good space :(

So I haven’t updated my blog in ages but I promise from today on I will try my outmost best to update it on a regular basis.

Since I last up dated I was diagnosed with 2 other diseases:Sjogrens and Osteoporosis

Emotionally and physically I’m not in a good space. My osteoporosis was brought on by my long term steroid treatment for my lupus. My bones are now very brittle and I have to be careful not to fall and fracture a bone. It will be detrimental to my body and the recovery period will be very long. From all the diseases I was diagnosed with the last 11 years being diagnosed with osteoporosis hit me the hardest. Because of Sjogrens my mouth is constantly dry and my tear ducks are dried out which means I don’t produce tears and I also don’t have any taste buds

I am not questioning my Creator but I am only human and sometimes it all gets too much for me. And I asked myself how much more pain must and can I still endure, what is next on the list for me. Pain is hitting me from all over.Lupus,fibromyalgia,Sjogrens and Osteoporosis are all causing pain. I always had my on and off days but now it seems as if I have more on then off days. I go sleep with pain and wake up with pain and its really getting to me.

But what can I do…I must try to remain strong and positive even though it’s not always easy just to ignore the discomfort and pain but I always tell myself Allah Swt won’t give me anything I can’t handle and there is people that are worst off than me.

May Allah Swt may it easy for all the sick people,ease their pains and fill their hearts with sabr and contement Ameen In Shaa Allah

Sjogrens

Sjogrens  syndrome is an autoimmune disease that mainly affects the eyes and salivary glands, but can affect different parts of the body. In more serious cases of sjorgen’s syndrome, the immune system can attack other parts of the body, causing symptoms and conditions such as dry skin tiredness and fatigue – which are common and can lead to total exhaustion, muscle pain, joint pain, stiffness and swelling ,vasculitis  (inflammation of blood vessels)

Osteoporosis

Osteoporosis is a bone condition that makes bones thinner and more fragile because of reduced bone density, and it puts people at risk of fractures, especially of the hip, spinal vertebrae and wrist. are some key points about osteoporosis. Postmenopausal women are most likely to get the condition, but it also affects men and younger people. There are risk factors for osteoporosis, including avoidable causes such as smoking. There are no symptoms caused by the loss of bone density in osteoporosis. Fractures are most likely in the spine, hip and wrists. Diagnosis is made directly via a special X-ray-based scan, but sometimes ultrasound. Treatments include drugs that prevent or slow down bone loss, exercise programs, and dietary adjustments, including extra calcium and vitamin D.Taking measures to avoid falls is important in the prevention of fractures in people who have osteoporosis.

Ladies Lupus Awareness Evening

Ladies Lupus Awareness Event 2014.05.09

So on the 9^th May we had our 1^st Lupus awareness event which was very well attended.

Evening was filled with tears, laughter, fun, scrumptious food, singing, dancing but most importantly AWARENESS.

Shukran/Thank you once again for everyone who assisted me in making the event a success and for all those who attended the event.

May you all be blessed abundantly Ameen In Shaa Allah

 

Colour Purple for Lupus

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Feroza sharing spoon theory 

 

 

 

 

 

 

Julie Martin Representative of The Arthritis foundation  talking about Lupus

 

Awaatief Adams with her beautiful melodious voice rendering a song

 

 

 

 

 

 

 

1 of our lucky draw winners

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Our Miss Lupus Glitz and Glam Kauthar Ryland

 

 

 

 

 

 

Lupus survivor Shameema with her friends

 

 

 

 

 

 

 

 

 

 

 

Kasha   of the best dress winners

 

 

I love them beyond infinity

29 April 2014


2 years ago I was wondering if I  was still going to be around today to see my son "Imtiyaaz" finding his spot in the workplace.

 He started his second job 1 year ago and tomorrow he is going for an assessment at another company.In Shaa Allah I hope he

 Ace the assessment so that he can qualify for an interview. So proud of the young man he is becoming :)

 My worse fear was that I wasn't going to be   around to see my daughter do her matric and celebrate her 18th birthday but Algamdoelilaah Allah Swt granted me the opportunity to witness all of the above :-)

Soon I will be able to go with my daughter "Mumtaz" to shop for her matric ball dress and do all the things a mom and daughter does together in preparations for a ball.

 I am so thankful for being blessed with 2 amazing, loving and caring children. They are my pillar of strength, my reason for living

 I love them beyond infinity and because of them I’ve been kicking lupus's butt for the last 8 years
May they both blessed all the days of their lives with good health and happiness and may the continue to be followers of The Sunnah of our holy Prophet Mogamat SAW.

May Allah Swt grant me the health and strength to be around to witness them walking down the aisle and to meet my grand-children Ameen In Shaa Allah

 

 

 

 

Lupus Cape Town

 

I always knew and believed I was given Lupus for a reason. From the beginning of my diagnoses 8 years ago I wanted to start a lupus support group already, but due to this, that or the other reason I just didn’t get to it

 Finally 2 weeks ago Algamdoelilaah with the koedrat and the hiedayah of The Almighty I did it."Lupus Cape Town" up and running.May Allah Swt grant me the strength and hiedayah to run this group to the best of my ability.Shukran/Thank you to everyone who believes in me and who supported and who are still supporting me in this endeavour. Meetings will be held the last Saturday of every month at my place until we find a suitable venue. And the support group is not just for lupies but for everyone who is interested learning more about lupus, gout, arthritis, diabetes etc

 

 

 

May is Lupus awareness month  and I have decided to host a Ladies Lupus awareness evening.

Arrangements and sales of tickets are going very well Algamdoelilaah

Lupus group supports World kidney day 2014.03.13

Lupus group supports World Kidney day 13 March 2014

 

In February I heard a discussion on our local Islamic radio station about a

Big walk being held on World kidney day. The Kidney association is very dear to my heart as my lupus is active in my kidneys as well.

I approached the Kidney association and asked if I can register as a lupus group.

I spread the word via Facebook and bbm .A lot of my family and friends were super excited to support this worthy course. I had lupus t-shirts printed and ask everyone to wear purple or green “kidney awareness colour “.

I was amazed and in total awe by the amount of interest that was shown.

Almost a 100 entries registered under the lupus group for the big walk.

The atmosphere at the event was phenomenal and everyone had so much fun.

There was a lucky draw and about 4 people of the lupus group entries won prizes.

 

I am so glad my family; friends and I could support the kidney association and in the same time raise lupus awareness.

 

Shukran/Thank you all for supporting this worthy course

Living with lupus is tough but I AM TOUGHER

 

Lupus the silent, invisible killer you can't see.

Some days I feel like my body and lupus are at war

Lupus might make struggle and fragile but you won't make me fall.

Regardless of you making me weak I’m going to stand tall.

To everyone else you are invisible but I know you are real because of all the pain you make me feel.

Some days  I wear the biggest smile even though I want to cry.

My feelings, hopes frustrations, my ups and downs, my fears all contribute towards my tears

How many tears do you still want me to cry?

Living with lupus is tough but I AM TOUGHER

By Mariam Sterras

The 3 C's of life :)

2013.01.30

For the last 6 years I’ve been taking steroids to control my lupus. And as all other medication

It has side effects lie: weight gain, diabetes, hypertension, brittle bones and kidney problems.

I gained +- 30kilograms when I started taking the steroids. Especially the top part of my body.

My shoulders became broader ,my breasts larger and I developed a tummy that I never had.

As time went on the lupus became under control. I was weaned off from the steroids and currently only taking 5mg.

And I lost a huge amount of weight all over my body except for my breast. It felt and looked as it just became huger and huger. I had constant back and neck pain. My boobs became too heavy for my small frame. I struggled to buy clothing. I had to buy large sizes to accommodate my boobs but then it didn’t fit me properly because of my small waste.

My Rheumy recommended a Reduction Mammoplasty ‘Breast Reduction’

“Breast reduction removes excess breast fat, glandular tissue and skin to achieve a breast size in proportion with your body and to alleviate the discomfort”

At first I was a bit sceptical because I was afraid that I might develop problems.

But then I decided to take the chance and on the 8th January I went for the Reduction Mammoplasty

I first had to go to my Rheumy for a full medical report and she gave the right away to the surgeon.

I went into surgery at 8h00 am and Algamdulilaah I woke up 11h30.The surgeons that did the procedure took all possible precautions to prevent any complications. The next day I started walking around in the ward and the nurses and surgeon were so amazed by my speedy recovery.

After a few days I developed an infection in my 1 breast but the surgeon assured me that it is common for woman to develop infection after surgery.

Today is exactly 22 days ago that I had my operation and I can honestly say I made the right choice to have the reduction. I don’t have that constant neck and back pain and I feel so much confident and happy with my new boobs.

 

 

 

 

The power of duah/prayer

2012.08.11

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

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

2012.07.

Yes I know I've made my  last entry on 1^st 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.

 

sick and tired of being sick and tired :(

2012.06.01

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

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.

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

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

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.