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.