Thursday, 9 April 2015

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.

Tuesday, 19 August 2014

Ladies Lupus Awareness Evening


Ladies Lupus Awareness Event 2014.05.09

So on the 9th May we had our 1st 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
 










 

Tuesday, 29 April 2014

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
 
 
 
 



Friday, 11 April 2014

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

Monday, 31 March 2014

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














Sunday, 24 February 2013

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

Wednesday, 30 January 2013

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.