This tweet post literally sums up my last blog post

Dont judge the book by its cover

I have been meaning to write about this issue a long time ago. It seems that Malays particularly, focus only on appearance and not a kind heart as whole. Appearance notoriety is at its best in Malaysia especially among the Malay community. Nobody actually cares for a kind heart. No compassion, no sensitivity, no unity.

All these are clearly seen in the recent accidents involving our MAS. Comments such as from stewardess not wearing headscarf and serving alcohol in flight to not reciting doa for all before take off (especially for MH370). Why do you need to call it bala? For all you know these people who died in these freak accidents all mati syahid. They are one level above you in the afterlife already you know.

Worst of all appearance is only one branch of it, there are other branches like be humble, be kind toward human and animals, be helpful, be aware of ppls feelings, be good to your neighbours, be respectful your spouse and family and berdakwah secara baik not mengutuk sesuka hati.

What I meant to say is, there are spiritual obligations AND worldly obligations. You cannot just be spiritually pious and you think its okay to have a temper, to kill animals for no reason and not respecting other ppl.

You have to strive for BOTH. BOTH. BOTH.

Everybody is so busy looking after appearances that they forget islam teaches everything as a whole. If you wear a headscarf or kopiah but you talk bad about people, you always belittle people and you kick cats and kill dogs, that does not embody what islam teach at all. It doesn’t mean you are baik if you wear tudung only for appearance but you leave all other teachings out just because you think you’ve covered your head. Case study Kiki Kamaruddin. How bad is her akhlak? But she covered her head so its okay. Bleaghhhhhhhh NOT

If you don’t cover your head then you are a slut and you are free thinker and you know nothing about islam. Even though those who do not wear the headscarf has more compassion than you lot. A kind heart does not give a meaning because your appearance does not conform to it. How plain stupid is that?

And then you pray five times a day, you memorise some of verses in quran, you feel that you are holier than thou when what you do is succumb to your temper , mistreated your spouse and feel that people who don’t do what you do is lower than you hence you will masuk syurga. Again, Islam teaches that it is not just praying and relationship with god, but human relationship is equally important as well. Your sins with Allah is one thing but your sins with human being is another thing. Allah will not forgive your sins with others because you need to seek forgiveness from the others not Allah for your wrongdoings to them.

As a muslim we should look back at our heart. Make sure it is whole and clean. That is the ultimate measure of how honestly pious you are rather than concentrating on appearance only.

Only kind hearted ppl will go to Jannah actually not ppl who strive on appearance to look good in front of others.

It's a catty life ^____^

Hellloooooo my blog i've missed you !

It has been nearly a year since my last entry. Things have changed a lot. Obviously haha. We strive to be better day by day. That is how we should live our life anyway.

My anger has dissipated (well, most of it). I took a chance to adopt a cat in October last year. Poor little thing was left to die in front of standard charted building near my office. She is now almost a year old already now and im so proud of her for surviving well albeit her constant coughing daily due to a punctured lung as a result of being attacked by a bigger cat. Her name is Anyau because that's what i called her initially. Fyi, i call any cat anyau in general. Just got stuck to her but then she has her other nickname like kahuna or kakak huna. Kakak huna because i adopted another 2 kitties after her! Now i have three cute kitties to take care of! ^_____^

As crazy (stupid?) as it sounds, i realise that i am not allergic to cats per se but because dusts caught in their fur and shedding collects dust, etc. DUST is the main culprit. And so i have to do extra cleaning like vacuuming or sweeping and mopping every 2-3 days....take antihistamine nearly on a daily basis...sigh... things that i do for my cats -____-"

The second one is a british short hair silver tabby named Olaf. It is a birthday present from ze husband seeing how happy I am living with a cat. Olaf also has his nicknames like Lafu, Abang Lafu, Lapu lapi and pu pi. See how the name evolves! haha :p Olaf is about 5 months old now and he is so cute like a teddy bear! ^_____^

Now the third one i just found her recently near the goldhill building open car park. She was wandering by herself looking for food and was looking kindda lonely and scared. I've named her Lola initially but changed it to Lulu as per my friend Nora's request because she is going to help me take care of Lulu. I wanted to put her up for adoption, but then again she is such a well mannered cat. I can even bring her to travel in a car without any hassle provided that she gets to sit on the lap all the way. No sound no agitation she will just gaze at me, play with my fingers and then eventually fall asleep....zzzZZZzzzzzz =^ ^=

Its a catty day everyone! How cute are they! :)

Cats have always been my first love and forever love :)

Miss Independent miss-understood

**This entry is dated 19 August 2013**

“There’s a place that i know. It’s not pretty but a few have ever gone. If i show it to you now would it make you run away or will you stay? Even if it hurts even if i try to push you out will you return? And remind me who i really am. Everybody’s got a dark side..”

Initially i wanted to lash out loud emotionally but since i am a working professional, i shall not delve into my personal life history should there be a search on my background by potential employers in the future. So this is version 2 which is ‘milder’ than version 1 I initially wrote.

Everybody’s got a dark side. Now i need you to remind me who i really am even if i try to push you out. I need someone like that. Nobody can ever understand why my mind cannot comprehend or tolerate any emotional pressure or attack. Nobody will ever understand why i am such an angry person. See i have a dark side darker than you. It keeps pulling me in and i will always try to get out. I can tolerate any physical pressure or attack but i will go berserk with emotional attack.

I was Cinderella.

Three hell holes and here I am. Over these years, how i wish i can change my face or erase my mind like the sunshine of a spotless mind. I prefer mystified memories rather than walking down memory lane.

That is why the cat remains an enigma , writing is a struggle against silence and i  often slip into my own world to an island of isolation when hope melts into despair at times.

Now tell me how deep my scar is?

Welcome to my dark side.

My stress was already at level 10 before you could even accept a NO answer from your parents to buy toys or something. Anyone can say try and be happy, pray a lot and remember god  and let go of the past but HELLOOO DO YOU REALLY THINK IT IS EASY AS A,B,C??!! My prayers have kept me from getting crazy or doing anything crazy like suicidal crazy because it is haram in Islam to take own’s life kan. At least my faith in god is enough to remind me not to kill myself, people.

Now let me tell you that my biggest achievement so far is getting out of depression, stopping inflicting pain to myself  AND fighting lupus.

I don't hurt  myself per se anymore now nor do i wear any mask. I am not saying what i have now is not enough. I always believed in silver lining and i have a silver lining now. But the demon from the past still lives on. The anger is still haunting me. Not that i want it to live on BUT it is HAUNTING. And if anyone provoke or try to push me emotionally, the rage will just lash out.

It doesn't help that i have lupus. It makes me more angry because i am always tired when its active. Steroid side effect was extremely pronounced as well. Life is definitely not easy for me.

And so now i thought hard..........

Hard enough that I think i may need to see a shrink. No matter how i try to ignore it and be happy like anyone would expect, it will still be there.

Ignorance and denial will not bring anyone anywhere.

I always end my rants with a positive note but i am still bitter with life. Until now.

Melodrama

In all this life that we have, little do we realise that it can all change in a second. Something new can start or something profound can just end. The memories you have, some of it may have been forgotten. Painful memories are often hard to forget and will always linger deep within. Pain is what people remember most rather than fond memories.

Soul threads from the heart connect you with others. See, i believe in soul thread. The more significant the person is the stronger the connection and the number of soul threads connected. We can choose to cut all of the thread to totally disconnect from that person. Or we can choose to only cut some and probably leave one or two connected. It is a degree of separation that you can choose to have, in spirit. To separate the mind and the heart is two different thing. You can choose to erase it from your mind but to detach the heart, one must cut off the threads.

I have cut some strings and all of it depending on the degree of pain these people have inflicted upon me. However, one or two still remains as part of me. That when I see them, they can feel the connection to me as well. Not as strong as before as most of it has been cut off but still there is still some left hanging. There are probably one or two people who have been out of touch but still in touch through memories. They feel it too whenever they see me.

Those people who i have cut off all of the strings would be significantly out of my life or memories. That when i see them, i virtually see nothing. The memories have been deleted including past feelings, fond memories or how we started or met. They feel the detachment too whenever they see me.

Since we wouldn't know how our lives will be in the future, there is probably a reason for this detachment and attachment. Our lives will always be intertwined with someone whether you realise it or not..

RAMADHAN KAREEM

This blog is inspired by some recent tweets, fb posts and whatsapp messages from family and friends and I too feel strongly about this so here goes..

"Dear Family and Friends, know the days of this world are short and days of the hereafter are longer. No matter how much the person does of the good deeds in this life, he/she will benefit from it in the hereafter which has no end."

Ramadhan is the month to seek blessings, goodness, obedience, learnings and teachings of Islam. Most importantly, Ramadhan is a month to achieve piety.

It is not about food or buka puasa at all instead it is more about humility, controlling desires and connecting to God.  The intention is to be sincere, grateful, controlling anger, bad thoughts and words in order to achieve the ultimate goal – piety.

In spiritual terminology, piety is a virtue that can mean religious devotion, spirituality, or a combination of both.

In a google search, piety is defined as follows:

“Noun 1.   1.The quality of being religious or reverent. 2.   2. The quality of being dutiful.”

Ramadhan entails fasting.  As a dutiful Muslims, we are required to fast for the whole month. Now what is fasting? Wikipedia says:

“Fasting is primarily an act of willing abstention from all food, drink, or both, for a period of time. An absolute fast is normally defined as abstinence from all food and liquid for a defined period, usually a single day (24 hours), or several days. Other fasts may be only partially restrictive, limiting particular foods or substance. The fast may also be intermittent in nature. Fasting practices may preclude sexual intercourse and other activities as well as food.”

Now, the true definition for fasting in Islam is abstinence from all, food, drink and sensuous activity. Basically nothing can pass through the body cavities including ear and nose. We don’t do intermitten fasting during Ramadhan nor do we fast for the whole day (24 hours).  Our body can still function properly and it gives our digestive system a rest. Women is forbidden to fast when they have their period and the number of days lost can be replaced post Ramadhan at anytime. Also, people who are unable to fast due to sickness or need to breastfeed will also be given a leeway from fasting but will need to replace it post Ramadhan as well.

As a Muslim, fasting is a choice you make despite your fridge and cabinets are full of food. You choose not to eat out of sincerity and faith to God.

We should all be reminded that the month of Ramadhan should not be reduced to a “food festival”. In fact, we should eat less and not be wasteful. This is when we should delve into the lives of fakir miskin. That some less unfortunate people only get two meals a day, if they are lucky, and they really have to withstand their hunger. For those people, This IS their daily lives whereas we, only have to fast for a month.

An aunt who volunteers through Pertiwi saw that many unfortunate people lined up for a meal be it young or old, regardless sick or weak, it is still worth it to queue for a meal. A meal my friend T__T

Imagine how we feel when someone who is not fasting eating in front of us lavishly while we are fasting. Imagine how those people feel when we eat lavishly and flaunting in front of them in all the 11 months in a year.

Hence, let us immerse ourselves in the true spirit of Ramadhan. Fasting is a break from 11 months of worldly selfish pursuits, a chance to cleanse one’s heart. It just doesn’t make sense to fast all day but only to break fast with a table full of food and eat till you drop. One, this will put a pressure on our digestive system and two, this eat till you drop thing just beats the whole concept of fasting. Our body and soul should be detoxifying the whole of this month not otherwise. We should feel cleansed. We should eat less and feed the needy – the orphans, the Bangladesh, the Indonesian workers, the homeless and the refugees. This is particularly magnified during Ramadhan but feeding the needy should be a constant act all year round.

May you have a blessed Ramadhan and may Allah grant us all full barakah. 

Selamat berpuasa.

where should i blog??

I am still indecisive whether to stay in blogger or move to wordpress...The thing is i can access wordpress from the office but then i have always been blogging here since like forever. I kinda like my new template now after changing it soo many  times. Oh well, i'll probably blog on both depending on my mood hahah :p

The thing is, my poetic justice is long gone. Swallowed by the busyness of life. My thoughts are shredded with daily chores for self and home. No time for daydreaming of words. I miss those days where i would have some thoughts and words floating through my mind. Endless time of memorising lyrics. Ideas will be streaming in every now and then. 

In terms of work i have been quite lucky though. So far i have a transaction to close every year since i started working in the investment banking industry. Alhamdulillah. My progress has been good but i still have to strive hard for the SC license. Which is a requirement. I should've waited for it when i was in RHB Invest where i was exempted from taking the exam but nooo i had to go to KFH. Thinking that i would be in the islamic banking side the rest of my life, i forgot completely about the license. And now i have to sit for the bloody tough exam "-_____-"

In terms of health, it has been improving tremendously since last year. I am reverting back to my old weight. I currently weigh about 53-54 kg. Trying to get down to 50-51kg still. I have included habbatus sawda, virgin coconut oil and green juice as part of my supplement daily. I am able to bend my left leg now however i still cannot do duduk antara dua sujud because my thigh and knee still feels tight. Think i still have to see the doctor for that. 

Now, i loooove my green juice! Actually its not juice la its like a blended greens..heheh

My normal ingredients would be:

1) Green apple
2) cucumber / zuccini
3) celery (its a must!)
4) lime and/or lemon
5) a bit of ginger
6) spinach or kailan or whatever green leaves i can find
7) fresh turmeric (not all the time depending on my mood or tummy. Turmeric is really good to quell tummy discomfort actually). 

I drink it every morning and it feels so refreshing. You'll get acquinted to the taste after some time, trust me. If i am pressed for time i will have GNC's powdered green juice. The taste is really yucky (imagine wheatgrass, kelp and spinach smelling powder +__+) so i normally add a bit of ribena to it. Nothing beats freshly blended or juiced greens though.

Alright, thats enough update for today. Hopefully i will continue to blog regularly from now on..hehe

Ciao ^__^

After a long hiatus.....

The cat is back again..! Well i am just so lazy to blog these days because:

1) I cant access my blogger.com account from office. The IT set some restrictions so i am always logging out whenever i want to enter the page -___-

2) I have been pretty busy executing deal and thankfully issuance is today yay :D

3) I cant be bothered to edit my old blog posts imported from blogger.com manually in wordpress. Its an eyesore but i think i just have to live with it. Not gonna spend hours editing it na ah  +__+

4) I have been adamant on losing weight and maintaining it. Most of my free time (which i dont have a lot) is usually dedicated to Jillian Michaels exercise videos. I love her workouts. My body feels stronger with her 3-2-1 circuit training method. 3 minutes strength 2 minutes cardio and 1 minute abs.

Here are 3 of my favourite:

5) Also, been fasting at least twice a week to ganti puasa and also trying to do the 2 day fasting method of consuming only 500 cal per day for two days. So far i have only succeeded in consuming 700 cal a day the lowest. Dont think i can do 500 cal a day lah. Die..

So all in all i've ganti puasa in total 9 days. I have about 34 days left to ganti as i have not been diligently ganti-ing my puasa for the past 7 years. Heh.. The fidyah i have to pay is getting higher every year so after the next ramadhan, i will continue with my 2 days a week of puasa.

Further updates, i have been ill - affected by the horrible horrible haze last week. Damn dusty smoke smelling haze. Even visibility was extremely poor and no sunlight! Must remind self to buy a box of masks during normal days to keep for hazy days. If not mask would just simply sold out or sold at the double the price.

Lalala

Ok it has been a while since i last blog but boy do i have a hard time deciding what template to use on blogger and wordpress...!! -__-"

However i am currently at home healing from painful sore throat and ear infection. A horrible combo i must say..

haha ;D

This is just soooo me! I would totally do that! muahahahah :p

HAPPY NEW YEAARRR :)

It's a brand new 2013 and my blog is supposed to be alive a few weeks ago but because my office does not allow me to view the blogger page then i can only blog at home..or probably set up the blog by email thingy..new things to learn considering my last blog was like ages ago.

So as i am writing this i am at home on MC with the worst stomach pain ever. Its like diarrhea pain that continues on on and when you go to the loo there is literally nothing coming out. Well doc says its probably 'salah makan' yesterday but hell it hurts so bad. Got a painkiller jab and the pain only subsides like 5 hours after that T_T

So happy new year everyone! New year new start new everything. To recap, i was on and off sick in 2012. The last 3 weeks before new year i was hospitalised because i was having on and off fever for 2 weeks complete with dizzyness headache and nausea all.. No im not pregnant (Yeah i got married) , i was just sick. My left leg that had the blood clot is still not healing properly. Still getting the eodema and tiredness. Now trying on a new drug -NSAIDs called Cataflam. Hopefully this will settle my condition.

Oh and the last post about the joint pain - it was actually a blood clot! Deep vein thrombosis (DVT). The one that you can get if you don't move your leg in the plane, etc. Yeah that one. Painful as hell and admitted to the hospital for that. Was on Prednisolone for about 8 months and gained freaking 8kg (from 53kg to 61kg). Did calorie count and managed to get weight down to about 56kg during wedding and lost some more to 53kg. But then put on 2kg so back to calorie counting to lose to 51kg. My actual ideal weight. So far so good i am down to 54kg in 1 month and i want to reach my target by end of March.


And...i cut my hair to a short bob (^_^)   

There is actually so many things to update but i have already forgotten about it now heheh (",)



Well, many blogs to come so to be continued...

My first taste of joint pain

I am currently on MC and have been on MC for the last 3 days. It started sort of like a leg cramp. I thought maybe i have injured myself when i last use the treadmill. Apparently not because after 5 days the cramp became really painful and i can see that the back of my knee is swollen. Off i went to a clinic at 6am in the morning because i cant stand the pain and when i told them that i did not fall down and mentioned that i have SLE, the doctors were like there is nothing we can do for you except to give you painkillers and rest until the pain go away. Lupus is attacking my joints since i did not injure myself.

Now let me tell you joint pain is really super freaking painful!!! :( i cannot even sleep and i actually feel like crying the whole time! The pain is really debilitating. I cant even stand up and not feel painful. Even putting my feet down for a sitting position is painful. I can only feel comfortable with my feet straight like melunjur like that or elevated. I have never ever experienced a joint pain before but now i know how painful it can be. Arthritis is really painful. Since i cant even stand up without feeling tremendous pain imagine trying to walk bit by bit. It takes a lot of effort and strength to just bear with the pain. What an ordeal!

so what did i do during these last 3 days? Literally resting my feet up and sleep and rest and sleep. I cant really do anything else right except to watch tv and surf the internet. Even taking shower is a chore. I need to put my feet up every now and then. Its quite tiring too move around too.

Initially, i didnt know what to do except that i know that i cannot walk around. Today is a bit better and i've made an appointment to see my rheumatologist on monday. My face is more puffy this week as well.. :(

Lupus: What really happened

I thought i would add to this one since every piece of blog is too long to write at a time. I mean i dont want to write a whole long blog to explain a whole long list of what happened.

Let us recap the eventful turn once again:

I was lethargic with extreme mood swings. I had difficulty swallowing, sometimes difficulty in breathing because my throat feels tight and my jaw hurts. My face was utterly puffy until I look quite different from normal. I was exercising but instead of going down my weight went all the way up. I was really irritated and uncomfortable even on the smallest thing. I also had painful heartburn.

Now my normal face is actually like this. As you can see the swelling and puffyness was extremely awful. People might think that i've gone fat or something but i was actually really sick. Its all swelling and fluid retention.

Like i said, i went to a number of clinic and ENT but none of them can ascertain what happened to me. For them because there is no sign of infection, they just gave painkillers and anti-inflammatory pills. The diagnosis came from my brother as he is a consultant radiologist in UH and he found that my glands were swollen and so did the subcutaneous tissue surrounding it.

The rheumatologist at first thought it is just Sjogren Syndrome because of the apparent symptom of the swollen parotid glands but further tests has shown that i have a high dsDNA which is only apparent in LSE sufferers.

 The steroid pushes the swelling down and my face is back to normal. My girth is also loosening and my weight is down to 55kg. My normal weight would be around 52-53kg usually so i have to try to loose another 2kg or at least maintain it since steroid's long term effect is weight gain and fluid retention as well. Its a double ended sword for me but i need it to suppress my flares for now.

Living with lupus

As you can see now i am quite free to update my blog haha :p Well when i am busy i will be really busy but when i am free i have a lot of room to breathe. That is the nature of my work, i guess. I could not tolerate a busy all year round work environment anyway expecially with SLE.

(I use lupus and SLE interchangeably, i hope you will not get confused. Its the same basically just that SLE is more specific.)

From my last update, lupus can cause rashes, joint pain, fatigue quite commonly. For me, apart from the puffyness of the face i have incredibly excessive fatigue to manage. It can be really horrible at times. I also experience terrible mood swings and can get really snappy and out of mind sometimes. And brain fog just made me look like i am not paying attention to what i do especially at work. Managing fatigue can be tough especially in the morning when you are rushing to go to work. Sometimes i could not move  like normal i became a bit slow so i started to arrive late at work. Now i am better so i try to wake up a lil bit early so i can take more time to get ready in the morning. And not to mention that i always try to sleep early since i want to wake up early.

I also try to exercise daily by going to the gym for pilates, dancing and hi-lo class and using those cardio machines. Having SLE and going on steroid adds on the weight problem. I get sort of fluid retention and expanding girth of which i did not have before. Hence, i can never skip exercise. It could just be light cardio if i dont have the energy that day but i still have to exercise. It will definitely help with the fatigue, weight control and build the bones.

After all that, i need to stay calm everyday. I mean i try to stay calm and i am definitely not the calmest person in the world haha :p But i have to relax everyday and keep the stress level low. Stress can trigger flare ups and also worsens my mood swing and sometimes pyschosis. Steroid only adds to it so yes i am like a ticking time bomb most of the time.

Eating healthily is the key for lupus and weight management. Basically i have to watch what i eat i cant simply gorge everything. Ideally, i have to keep consuming calories under 1500 kal a day. No fried or processed food if possible. Eat more fruits, protein and calcium rich diet. You see, steroid can cause brittle bones and osteoperosis. Calcium is really important in my diet currently to avoid any bone injuries. I take calcium pills, vitamin E, fish oil and vitamin C on a daily basis. I also tak habbatus sawda ( black sesame seed) daily as a supplement and I try to eat 4 types of fruits everyday.

One more problem for lupus sufferer is sunlight. Exposure UVA and UVB can cause rashes and systemic flare ups when the disease is in its active state. I have to avoid sunlight particularly between 10 am to 3pm because UV is at its peak. I have to wear sunblock daily (which has been a habit to me anyway), sunglasses and umbrella if i have to walk outside. I also have to stay in the shades most of the time. So no island trips for me this year :( A huge sacrifice for an island person like me who needs the island getaway to stay sane! :(

However, i have got a letter from doctor to tint my car darker than what JPJ is allowing to limit my exposure to sun while driving.

Another problem that i have currently is horrible gastric. My acid reflux was really bad last month but now it is more tolerable. I have consumed bottles of gaviscon and on pariet since i am on steroid. Steroid does not help with gastric it only worsens it. Some days my stomach can get very acidic but some days its just normal.

Apart from gastric is a steroid induced imsonia. I am having a terrible time falling asleep even though i feel very tired. Thats why i try to go to bed early so i can read magazines or books to relax and eventually fall asleep.

One more thing, as i have Sjogren as well, i have dry skin, dry mouth and dry eyes. So far i have had dry skin since like forever so i am really discipline in terms of slathering body oils and creams after shower so its all good. Dry mouth entails more care to use tongue cleaner and to not forget to brush the teeth twice daily to prevent dental decay. People with dry mouth has a higher risk of having dental decay because of not having enough saliva to wash the mouth from bacteria. For dry eyes, i avoid air cond air drafts and wear sunglasses when i am out. My face and eyes will ache terribly when i cry so i try not to get emotional even though it can be really tough. When my face is puffy, you can see its like 'sembab' like that.

As you can see my life has become regimented with this disease. I have to eat properly, sleep properly, rest properly and exercise properly. I can never not do any of these in a day if not i feel horrible. Regimented life is not fun sometimes. I have no room to navigate when i feel tired. I cannot be too active or i will end up more tired. I cannot stay up late because i will get tired the next day. And when fatigue kicks in i just feel tired at any point in time. When i feel tired i have to sleep and cannot force myself to go out just to accomodate people.

Being on steroid also makes me vulnerable to infections. I cannot be near sick people because i can get easily infected and if i get infected it could  be fatal so i have to get treatment immediately! Not to mention that the doctor must monitor my kidney function every now and then to detect any kidney failure early so i will not have a shorter life span haha :p


So there you go. Lupus affects the quality of life so it is just managing it to get through it.

SLE and Sjogren Syndrome

OK now let us now continue with Lupus. Yes i am suffering from Systemic Lupus Erythematosus (SLE) and Sjogren Syndrome. Basically Sjogren came with the SLE. It has never occured to me that i would be one of the people suffering from lupus. I've always read about it in magazines and newspapers but never would i thought i would be diagnosed with it. It is not as bad as cancer but it can be life threatening because it can lead to kidney failure, blood clots, hypertension hence heart attack, epilepsy, problems with lungs and pancrease and osteoperosis. Some people detected it late and it had already affected their kidneys so they can only survive another 5 to 10 years. As for me, i am lucky enough to have an early detection as Sjogren attacks my parotid glands that made my face puffy so the desease became very apparent. Parotid glands are the glands at your jaw under the front ear. The glands are also responsible for producing bodily fluid like saliva and tears.

Now, no two people will have exactly the same symptoms with lupus. It varies with individuals therefore treatment is tailored specifically for individuals. I had spent some time to do research to understand the desease and understanding it can be quite difficult. Take my case for example, i only noticed my illness when my face became very puffy, i had body ache and fatigue. I was literally down with cold or fever every month. I thought i was because of my sinusitis and my allergy that i often get sick. I had difficulty swallowing and sometimes breathing. Then it got worse and worse when fatigue struck almost every day with radiating jaw pain and more puffiness. My weight starts to pile on despite me exercising and doing high intensity activities like bootcamp. For me i do not have the butterfly rashes on the face but i did have rashes on some parts of my body that eventually dissapears. Oh and i had brain fog sometimes so i cant really function properly on some days.

Why do i say i have LSE and Sjogren? It is two different type of lupus. LSE may affect various parts of the body, but it most often manifests in the skin, joints, blood, and kidneys. Its very name helps define the disease:

• Systemic is used because the disease can affect organs and tissue throughout the body.
• Lupus is Latin for wolf. It refers to the rash that extends across the bridge of the nose and upper cheekbones and was thought to resemble a wolf bite.
• Erythematosus is from the Greek word for red and refers to the color of the rash.

Lupus has many different symptoms. Common ones include:

• Fatigue
• Joint pain or swelling
• Skin rashes

Sjogren (pronounced SHOW-gren) Syndrome on the other hand, is a chronic autoimmune inflammatory disease in which moisture producing glands are damaged, signinficantly reducing the quantity and quality of saliva and tears. Although the hallmark symptoms are dry mouth and eyes, other organs may be affected - kidney, gastrointestinal system, blood vessels, lung, liver, pancreas and nervous system. Patient may experience extreme fatigue and joint pain and have a higher risk of lymphoma. Nine out of ten patients are women. Half of the time Sjogren occurs alone but on the other half it occurs with other connective tissue disorders such as SLE and rheumatiod arthritis. So like mine, it can be viewed as Secondary Sjogren because i am more towards SLE.

How do doctors determine whether it is SLE or Sjogren or both? From my research and what i can see from the blood test  i did, SLE will show a high level of anti dsDNA. Only people with LSE will have a high level of anti dsDNA. Sjogren is determined with anti Ro and anti La. Apparently my anti dsDNA is very high which is why doctor thinks its more towards SLE than Sjogren. So SLE manifest itself in the body and Sjogren contributes to the swelling of my parotid glands. Do you get the difference?

From my experience, these are the cronicles of the symptoms that i have had for the past years:

1) Kidney infection stage 2 in 1999 which can lead to kidney failure it went to stage 3 at that time. Luckily i detected it before it went to stage 3.
2) Unexplained recurrent urinary tract infection in 2004.

3) Rashes on the hips and thigh area and sun rash on the neck area in 2001 and 2006.

4) Fatigue every now and then but more apparent in 2011 with the swelling of parotid glands.

5) Difficulty breathing (misdiagnosed of pharyngitis) 2008, 2010 and 2011.

6) Throat ulcer in 2011.

7) puffy face and fatigue in 2011.

8) upper body muscular pain and fluid retention in 2011.

9) GERD in 2011.

10) skin rash on palm of hands in 2011 due to sudden allergy to household cleaning agents.

I have also had recurrent sinusitis sometimes nose bleed.. As you can see the disease has already manifested itself without me realising it. The illness i get may look like a normal specific illness but actually it was flare ups. Like skin rash, i went to a dermatologist but somehow it went off by itself after a year. The recurrent urinary tract infection was unknown because my urine shows a normal result. When i look back at all my pictures, i realise that sometimes my face was round and sometimes its oval. Technically, my face can change just like that.

It is important for me to document all this for my own understanding and for the others to understand me. Autoimmune disease are permanent. It has no cure and i just have to manage it properly to avoid life threatening situations. Medications are steroids and plaquinil (anti malaria) tablets. I will have to take it up to 4 years to suppress the flare ups and then only can i get off the steroids. It is a life changing situation but thankfully i have been living quite a healthy life like eating a lot of fruits, exercising, wearing sunblock everyday and sunglasses when im out. My habit kindda saves my life actually but island trips has done more damage to me without realising it. Lupus sufferer is sensitive to UV light which can cause rashes or systemic flare ups. We are not allowed to go out between 10am to 3pm daily beause UV is at its peak. As for now, i have to let go of my island trips this year and manage my disease first. I hope next year i can go swim with the fishies..

Medication and sunlight is another topic that i shall delve into in my next update. Living with lupus is not easy but you just have to keep on living.