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.

Beauty tips tried and tested: Vinegar to get rid of hair residue

Ok before i start the lesson on Sjogren, there is this one other amazing thing that i have to highlight:

Have you ever felt like you hair is so coarse, dry and frizzy? Well its a sign that there is product build up in your hair. It either limps it down or make it dry, frizzy and full of 'extra' volume and kinks. Hideous, i know. Living in a hot tropical climate will only make it worst. You thought putting on serum will solve the problem but no it will always be worst.

And so i read somewhere, maybe in the internet, to rinse your hair with a quarter of vinegar to water as the last step of washing your hair. Do this after you've shampooed and conditioned your hair. The smell of vinegar can be a bit off putting so remember not to dilute too much vinegar in the water. There will be a faint smell but it will go away when your hair dries up.

I tried it last night and wallaa frizz no more! :) i should try and do this every two weeks to keep my hair healthy and frizz free. You can use any type of vinegar ie. the distilled vinegar or the apple cider vinegar. The apple cider vinegar is a bit more smelly than the distilled vinegar so just be mindful of your concoction.

So now you can save money on saloon trips and products to keep your hair healthy and frizz free. Dont you thing this is a good tip? :)

A lil' bit of update

So it has been a while since I last updated my blog. The last one were tips on how to use assam jawa as a home made natural remedy to combat/cure illness. Oh well, many things have happened since the last 6 months. That is actually half a year to be exact. Been busy with work, yes. Been ill, yes. Been dealing with family, dad and emotional uncles and baggage, yes. Been busy with merisik and engagement, oh yes.

Before that, been busy quarrelling like hell with my now fiancé like we were about to give up and break up but God is great. In malay they say “kalau ada jodoh tak ke mana” is literally true. I have a feeling that he is my jodoh in a true sense. Like we are made for each other albeit the differences in perangai. Well God mad us in pairs and we are suppose to complement each other not be the same. I thank God for that and I am grateful with what God gave me. And all of this commotion happened when I was just about to turn 30. Its like 30 is the magic number. Another turning point in life.

Even though there is a rainbow after the rain, it rained really heavily. As I was turning 30 and turned 30, I had to deal with my dad - forgiving and accepting my dad for the past and what he is now, I was diagnosed with an autoimmune disease last month (I have been really sick for the last two months) and I decided to get married. As for my newly diagnosed illness, I didn’t realize how serious it was not until my face became so puffy and my weight went up to 57.5kg and climbing from 53kg then I suspected something was really wrong. I thought I was going fat and so I was, sad angry, bipolar and sick. It was horrible when I think about it now. I felt really horrible because I didn’t know what was going on with me at that time. I was on MC most of the time.

Now let us recap, I have endometriosis, non-specific colitis and gastric. Now to add on the list I have Sjogren Syndrome. Sjogren made me feel horrible because my parotid glands were swollen and 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 gastric reflux with Sjogren.

I went to all the clinics even ENT but none of them can tell me what was wrong with my face. Instead they ask me why my face if puffy. Stupid doctors. The only clinic that did some investigation was Drs. Young & Newton at Cap Square. I would recommend that clinic to anyone. Thanks to my brilliant brother who is a consultant radiologist at UH, I was finally receiving the right treatment. He did MRI, CT scan and ultrasound on me all in the span on 3 hours and he suspected autoimmune disease.  Off I went to a rheumatologist who confirmed its Sjogren with more blood tests.

So here is my update as for now. I shall continue more and educate you readers on what is Sjogren Syndrome. It is very important for me to spread this as it was really frustrating when doctors at clinics cant recognized the symptom and diagnose it properly. My life could have been in danger because like lupus or SLE, the antibody can attack the vital organs. 

So stay tune for my next coming updates….