Chapter 1 ~Wheelchairs and walking aids~

There was a point of time that my hip joints were in excruciating pain. Walking was made harder... and it didn't make sense to me because I was already receiving treatment for my SLE disease. So it was back to the hospitals again to find out what's causing this pain.

Dr. Kiren, the specialist who was treating me at that point of time, wanted me to do an MRI on my legs. She did a physical examination on my leg and found that I couldn't rotate my legs properly. I'm loosing rotation and other form of movements that involves my hips and legs. Frankly, it was really bothering me. Since I love to walk, it is making me feel more and more annoyed.

After about a year trying to settle down with SLE, when I thought no other complications could arise, I thought wrong. This had to come about. Without doing the MRI it was difficult to determine the real damage that had happened.

You see... among other side effects of steroids a.k.a Prednisalone, is the damage done to the blood stream that causes insufficient food supply to areas that is in need. My head femur were very much effected. Some won't get this problem until later in life... some are less fortunate, like me, and gets this effect almost immediately.

A round of pain AGAIN... but this time it is more concentrated to my head femurs of both legs.

I was finally diagnosed with Bilateral Avascular Necrosis of the Hips at HUKM by Prof Shahdan. (We did not stay at Sunway Medical due to financial reasons)

No cure for that either. There were a couple of suggestion what to do with my facing problem... nothing seems to be working.

During my last semester in the university, the pain was becoming more and more unbearable. I was referred to the Orthopedic specialist under the care and observation of Professor Masbah's team (inclusive of Dr. Shahril). They had set out a date to do my Hip Replacement Surgery.

Whilst waiting for the day to come, I had decided to lessen the pressure to my hip bones. Didn't want to elevate the problem further. What did I do?

Wheelchairs and walking sticks!

This was the time I learned how valuable "ramps" are. My university had ample ramps and there was a lift. But the attitude of the students at my university was unbearable. Knowing that I'm with my wheelchair, you'd think that they would make room for me in the lift. Such imbeciles.

However, my friends were always there. I owe a lot of my getting around campus with them. I can wheel myself to places... but it was faster and truly easier when someone was wheeling me through classes.

Many had admired my courage... some jokingly said, "Sarah, if I was in your position, I'd not come at all and probably the lecturers would allow it too.."

For me, I can't take the easy route out because I don't believe in it. Sure, there will be people helping with notes and lectures giving me leeway for attendance and as such... but I can't escape my own conscience. I can't understand notes without listening to what the lecturer is giving out lectures about.

So, with all the will that's instilled in my body, I wheeled myself to classes for everyday for the whole last years in university - with a smile.

I'm not ashamed of the wheelchair neither am I proud. It's just like having to wear glasses to read... it's an aid. And for this wheelchair is MY aid to lessen my pain on my hips.

I found that my boyfriend was also a helpful person. He'd wheel me whenever we are out shopping at any shopping complex - with no feeling remorse or shame or "kesian". What's more, it brought us somewhat closer and made me feel special everytime he does take me out.

We went to shopping complexes, theater shows and rides all over with my wheelchair and walking sticks. It's not that bad actually...

I guess, being able to understand my condition, everything was taken in stride. Wheelchair and walking sticks were just a temporary thing.

Will definitely blog about my experience being operated - half awake!

~This is the diary of Sarah Kambali, LL.B(Hons) IIUM, SLE Patient.~

Chapter 1 ~ Learning to live with pain

First it was pains in my joints. I had to live through it the whole period of December 2002 until I was diagnosed - June 2003. A good solid 6 months before actual diagnose and proper Prednisalone i.e. Steroid intake. Actually, the pain started even before December 2002 but it elevated in that month itself.

Imagine all joints... and I mean ALL of your joints in terrible pain when you sit, you hold a pen, you stretch, you sleep.. any kind of movement. Even eating takes a long time to chew as the jaw-joints are incredibly painful. I remember the pain... I was trying to live with it throughout the period.

It's not that the Dr. I was seeing did not give me pain killers... In fact, there was aplenty of them prescribed to me and various types when the Dr. found out that the previous painkiller did not work it's charm to lessen my pain and swelling. Nothing worked.

Blood test after blood test. There was not a single conclusive proof as to what I was having at the initial stage of my SLE pre-discovery.

I was still going to university during the months of December 2002 up to February 2003 (before they close for semester break). I was studying for semester exams in utterly painful state. Not only was my joints acting up with swelling and pain, my hair had dropped in tremendous amount that it had left me bald. The "hikmah" or blessing of being in the university I was studying, the women are required to wear a "tudung" i.e. headscarf, being an Islamic University.

No one from my university mates knew I was suffering. Those who were from the same dorm as I couldn't comprehend my pain. In fact, there was an incident when I had asked for help to get a bottle from across the room, though my friend did help me take it, she thought I was just being "mengada" i.e. lazy to get it myself. This she admitted herself when she came to visit me after my diagnosis of SLE.

My ego was much bruised when I can't do everything on my own. When everything I do involves limitation and pain. I needed help from people but I'm not used to asking. Don't get me wrong, people are kind to help when asked but I'm used to do things on my own... and sometimes with gritted teeth.

When I finally got the diagnosis, university's new term was about to start. Pain had depleted totally from the intake of 60mg Prednisalone i.e. 12 (5mg) tablets of steroids. But because of the fact that I have high dosage of steroids, my Dr and family had successfully persuade me to stay off campus for one semester or until at least my situation became more stable.

My phase of pain had gone away, but it didn't mean that I was cured. SLE is an incurable disease. Emotionally I was scarred. To say I have recovered from the scar totally, is a lie. I feel it sometimes of what had happened. Even typing this out made some scars to resurface.

It's not easy to re-write things without feeling emotionally damaged. People see me as a strong human being. Mainly because I smile and I have a positive outlook in life. The disease has in many ways changed how I look at things... but it doesn't mean anything. Deep inside, if I look back to the past, I can still feel the hurt, the pain, the beginning of knowledge to learn I have SLE... the knowledge that I was NOT a normal 21 year old girl.

"Berat mata memandang, berat lagi bahu memikul" as the Malay proverb goes. It's true. No one knew about the pain I went through. My family saw everything and they had helped to their best ability to get me back to "normal". No one knows how sad I am that I was not able to be the normal daughter for my parents; that they still have to take care of me, emotionally, financially and unconditionally.

Despite all this, I try to think positive. Things turned the way it did for a reason. Now, I have more meaning to life and somewhat know my purpose when I survived and still am battling this incurable disease. It's not easy to make people understand what this disease entails. It takes more than research online, brochure and interviews... it's only when you ARE the patient and you ARE the person who is close to the patient, you will learn deeply about the disease.

Read more of my diary, I promise you will learn more bout the disease in a patient's point of view. If you want medical terms or medical answers, the exact medical quotation, I can't give you that.... but I can give you what I am going through as the days go by.

I try my best to make people understand my condition. To understand the SLE disease. Some of my friends who have their loved ones having SLE sometimes come to me for advice. All I could advice them is not to panic and not to stress out the person with SLE. Always turn to God, no matter what religion you are. Make him/her as loved and comfortable in their life. Learning about SLE for the first time is scary for anyone.

That was why I have finally decide to type out this diary. In HOPE to make people out there with SLE or with their loved ones having SLE to understand that things are not as bad as they are if you manage the disease wisely.

Don't let the disease win you over. It's not the end of the world. It is, if you want it to be.

One of my many mottos nowadays since the disease :

"Kalau fikir sakit, sakitlah kau!" (Translation : If you think you are sick, SICK you will be!)

Ouh well... enough for now. Next diary entry would be about the side effect of Prednisalone for me... especially on my hips. More pain!

~This is the diary of Sarah Kambali, LL.B (Hons) IIUM, SLE Patient~

Chapter 1 ~ Background check (studying life)

Is this blog on?

I know that I was supposed to "launch" and "link" this blog with the SLE Association Malaysia... that was my personal project. But I got carried away with life.

Ok.. lets do a little "background" check on myself before I advance to another chapter.

Hmm...

Name : Sarah binti Kambali
Age : 26
Sex : Female
Nationality : Malaysian
Religion : Islam
School : SKTTDI, SMKTTDI, Matric IIUM, IIUM
Degree : LLB (Hons)
Date of Call to the BAR : 25th October 2007
Previous Jobs :

• Salesgirl in DKNY & Guess when I was 18

• Sales Exc in MPH OU (in between of holidays during Matriculation)

• Pupilage with Richard Wee Thiam Seng @Azizah, Sarina & Khoo AND Y.H Teh & Quek

*phew*

This is turning to be a "resume". Well... there must be variety in typing out my own Diary. Easy reference, eh?

Anyways... Ever since I was diagnosed, I never saw the illness as something serious. In all honesty, I was thinking nothing of it. All the worrying was done by my family members, to which I will interview one of these days and put it on my blog. A video, perhaps? We'll see...

I continued living whatever life I could live. When I was first diagnosed, I had to be admitted and was in and out of the hospital. There were aplenty of things that were happening during the time. At one point, I think I was loosing my mind. Of course, this was all remembered clearly by my parents especially mum. I had no recollection of what had happened.

The first year was tough on my parents... because I was in a numb state of mind. I'm not sure if it's the pain in my joints, or the fact that my antibodies were fighting each other that had made me "numb" in a way.

I took one semester off from university to get use to what I was going through. This taking leave was not my idea... if it was up to me, I'd still go to the university and continued my education. But after much persuasion, my parents had successfully made me stay home.

When I did come back, it was difficult to handle the stares and questions. I was no longer stick thin. My face had turned round with no "runcing" features. The only thing that stuck by me was my voice.

On the first day, I'd be standing next to a friend, who didn't visit me in the hospital or home, and she/he wouldn't know who I was. They would stare trying to figure out who is this "newcomer" in the Law faculty.

Only when I spoke that they had a shock expression. They would say, "Laaa... Sarah, ko ke?" (translation : Ehh... Sarah is that you?) and the next question would be "Mana ko pergi?" (translation : Where have you been?) and not to forget "Aku dengar ko sakit.. Ko okay ke sekarang?" (Translation : I heard you were sick.. Are you ok now?)

The end of any conversation would be : Ko nampak comel lagi sekarang. Lagi lawa.

(translation : You look cuter now. More gorgeous even)

Imagine, every turn for the first week... all my friends who were from my batch had the same expression and the same lines. It happened 4 years ago.. but I can still remember it clearly because it ANNOYED the hell out of me.

Things were not easy for me. I could no longer stay in campus. My doctors thought it was best that I stayed home. So, I was no longer at priviledge to stay in campus and I had to commute. Who was my commute person? Dad mostly... my boyfriend ( who I hooked up during my illness ) and my friends who were kind enough to send me places and home.

My batch were no longer my batch. I had to adapt to the new batch. One thing I thank God was that I am very easily accepted by people, despite my "sombong" face (stuck up face). I have a quality that if I don't smile, I look stuck up enough that people are scared or not interested to talk or approach me.

Another thing I thank God... the batch I was easing in, was people I already know during matriculation. They had helped me a lot... for that I will never forget their kindness and helpfulness.

There were lots of adjusting to be done during my initial year of me and the illness... but with love and help from my family, the new guy in my life, my uncles and aunts, my friends and the lecturers... I was able to graduate and also able to live life as "normal" as possible.

Or course... at the final year in the university things got a little tougher. I had to start using the wheelchair. Why? The legs - hips particularlly - were painful. I had developed Avascular Necrosis of both the hips. What is this, you ask? Well... basically, the roundness of the hip bone has depleted and is continuing to deplete due to steroid intake. The steroids that I took to stabilize my condition of SLE had lots of adverse effect... one of which is this.

Well... to cure one evil, you have to choose a lesser evil.

Maybe on the next Chapter I'll explain the condition in detail... time to leave you wandering how I coped with pain in both my hips and how my final year in university had been with me using a wheelchair & walking stick.