Monday, July 07, 2014

Reconnected To Another HERO

Last 2 years I received a call (or sms) from Dr. Tang. She asked me to do a favour for her. There was a new patient from Kuantan and she wanted me to call the mother to share my experience on Jaja's first admission to Hospital Selayang. I said ok right away and gave the mother a call.

I called her, shared my experience and told her not to be afraid. She was actually concern about the bone marrow procedure biopsy. This biopsy is normally done to rule out other possibilities such as Leukimia or Cancer. After few minutes we ended the conversation and I hope she did the right decision to treat her daughter at Hospital Selayang. I didn't contact her after that.

Last few days, I reconnected with an ex-schoolmate through Facebook. She's living in Kuantan too, just like me. Then she messaged me through the messenger. She told me that her 4 yo daughter has JIA and guess what she said next?

"So it was really you Odie (my nickname) who called me last two years".

OMG, it was the mother whom I called! I didn't realized she was my ex-schoolmate. We chatted more and exchange numbers. I was really glad. Glad to help her in the first place and glad that she's actually a friend. 

To Ina Mail, our daughters are HERO. Hope to meet Zizi soon ;-)

Wednesday, May 14, 2014

The Invisible Pain

I have a draft in my postbox. It's about how Jaja was doing well after 4 months of free from medication since December 2013. However, that post might not be relevant anymore. For the past 1 month Jaja has been complaining about some pains here and there. At first I thought she was just tired because she has been attending sport practices in the evening. But then, the sport practices have been postponed due to hot weather. And yet she's still complaining the same thing.

Something is just not right. Lately, she has some difficulties to wake up in the morning. She seems stiffed. When it's time to bathe, she asked me to help to undo her pajamas. She told me that her fingers and legs are in pain. Although she was not crying, but I can see how lethargic she was. One good thing about Jaja now she is able to describe her pain. And this makes me easier to jot down her pains in my journal that I created just for her.

So today I wrote an email to her rheumy. And boy, I got an immediate response. She asked us to come to see her as soon as possible. As I expected and feared most, she's afraid that Jaja's arthritis is active again. I don't want her to take the meds again but in the same time, I don't want her to suffer in pain. Actually I was very hopeful and confident that she'll be fine for the rest of her life after stopping the meds, though her rheumy did warned me that it might strike back (flaring). Looks like it just did...

Wednesday, February 05, 2014

The Other Stories

Note: This is an old post that I forget to publish.. Hehh..

Just now while waiting for Jaja's turn to see her rheumy, I exchange conversation with a mother. She is also like me, accompanying her daughter for check-up. It's easy to identify kids with SLE or JIA because most of them tend to have cute moon face. Being me, I can't help myself to smile and ask about her daughter. It struck my heart to know that her daughter is not just suffering from SLE but also kidney failure- stage 5. But yet the innocent face of her 13 year old daughter remained calm as she listened to our conversation. She didn't look despair at all. The mother told me that her frequent trips to the Selayang Hospital made her move to KL about one year ago. They were from Perlis. And that is like 6 hours drive to KL.

These kind of stories made me bersyukur because Jaja's condition is still under control compared to other patients. Most mothers whom I met will not believed Jaja has JIA because she looks perfectly normal. Not until I told about Jaja's ordeal before getting proper treatment. At that point, they can relate to their kids.

Frankly speaking Jaja is coping very well with her JIA. Her rheumies are impressed with her tremendous improvement. Jaja weaned off from Prednisolone quite early compared to other kids her age. She did had the moon face look but just for a short period. Looking at her now, you won't believe she has JIA. She's tall and looks normal except for that little finger. I guess that crooked little finger will serve as a reminder that she's a JIA kiddo.

Wednesday, January 29, 2014

Run Irin Run!!

Sakura season is coming again and I haven't blog about our Japan trip last year.. muah muah muah. How should I start eh? I think what I'll do is to post some stuff randomly. Aku bukannya terrer tulis karangan panjang2 nih.

It was a 10 day trip, starting from Tokyo and ends at Tokyo again :-p Well, when Air Asia was having the promo, we just bought return tickets from KUL to HND without any plan. It's like "Eh tiket murah, jom pi Jepun tengok Sakura". Hehehe.. macam ajak pi pasar lak. We only plan our route after buying the tickets. Frankly speaking I only studied the Japan map 2 months before the trip. Masatuh barulah sedar it would be better to end our trip at Osaka instead of Tokyo again. Tapi apakan daya tiket dah beli, so we just plan our best to cover Tokyo, Fuji, Kyoto and Osaka in 10 days.

Us cam-whoring in the JR Train.
Initially, Chot was given the responsibility to do the itinerary since I don't know anything about Japan (though I work with one). And Chot pandai cakap Jepun (alasan yang tak munasabah hahaha). Tapi sebab dia busy memanjang maka aku dengan Sareque pun take over. Mak2 jugak kena buat khennn :-p Like everyone else, we chose the places that we wanted to visit and plan the route. Planning for Fuji- Osaka was the hardest because there was no much info in the net. Nanti aku story the funny incident in Fuji hahaha

Saat2 nyaris ditinggal kapal terbang hahaha.. Nun di hujung sana adalah Irin sedang berlari kehkehkeh
Oh, btw this was another funny incident. All of us arrived at LCCT early but end up running (err.. aku, Chot and Sareque jalan laju jek sebenarnya hehehe) for our lives to get on that plane. Apparently we didn't notice it was time to board until we saw it was 'Final Call' for our flight on the Departure/Arrival board. Dah terminal tuh dok announce final call for Kansai, Kansai, Kansai. Memang ler kitorang buat bodoh jek. We were heading to Tokyo, not Osaka. Bongok betul announcer tuh.

Anyway, we managed to board of course hehehe. If not bag kitorang jelah sampai Tokyo kihkihkih


Wednesday, April 03, 2013

Japan Trip

I can't believe I'm going to Japan this weekend with my buddies. Yes, it's girls trip again. Last trip we had was in 2011. You can read the chronicles of our Euro Trip in Adzue's blog. Just click the June-July 2011 entries. Aku bila baca balik, mmg sengih tak henti2. Trip Japan nih siapalah nak blog ek?

This time the crowd is smaller. It will be just me, Chot, Sareque and Irin. Adzue tak join sbb dia selalu pergi Japan for work related. Others were tied with work and didn't had budget when we were in planning stage. As for me, I'm always fascinated with Japan- the culture, the people, the places. So, when Chot suggested Japan, I said yes straight away.

Unlike UK trip, this time I'm going backpacking style. Will be lugging my 32L Deuter backpack and my newly purchased Crumpler camera bag for this trip. Yes, I bought a smaller lightweight camera bag just for this trip :-p My Lowepro backpack is quite bulky to pair with my Deuter. I haven't pack my things yet *gubra* Hopefully 32L is roomy enough for my clothes and 'hasil tangkapan' shopping.

We've been Whatsapping each other on the plans and itinerary for the past few months. In the early stage of planning I told Chot that I know nothing about Japan and I'll leave it to her to plan the itinerary because she knows better. Tapi last2 aku ngan Sareque yang buat sebab dia busy benor :-p I even bought Lonely Planet Japan just to know more about the Land of Rising Sun. We have just finalized our itinerary last week and I hope we have enough time to visit all the places we have listed. We'll start at Tokyo and then to Kawaguchiko to see the majestic Mt. Fuji. From there, we will travel to Osaka via Shinkansen. The last pit stop will be Kyoto before returning to Tokyo for our flight back to Malaysia.

Oklah, sekian percubaan untuk blog about this trip :-p Insya Allah, I'll share our experience here. Rasa rugi pulak kalau tak jot down. Semoga aku gigih seperti Adzue.

Shibuya aku datang!!
Source: Google Image

Monday, March 04, 2013

The Unknown Reason

Sometimes, it's quite difficult for me to explain on Jaja's Juvenile Idiopathic Arthritis (JIA) to people. Normally people will ask what, why, when and how did she gets arthritis in the first place. When I told them she had it at 2 years old and the reason is unknown, most people will give me 'that' stare, that doubt stare, that 'yeke' stare. It's hard to believe but that's the truthful answer. Even if you ask a rheumatologist, you'll get the same answer. 'Idiopathic' means unknown cause. Jaja was born healthy and fine. Then at 2 years old she had her first sign of arthritis, the swollen knee. But she was misdiagnosed, her condition worsen and she suffered for almost one year until we found the correct doctor for her. Syukur to Allah.

Arthritis in kids is different from arthritis in elder people. Jaja arthritis is because of her autoimmune. Yes, you normally heard this in House tv series. Actually this autoimmune is the 'unknown cause'. Autoimmune is when the immune system makes a mistake and attacks the body's own tissue or organs. In Jaja's case it was her joints. I would say Jaja is lucky because she has Polyarticular Arthritis, Rheumatoid Factor Negative. Some kids have more severe arthritis condition than her. Some of you may wonder whether she may had it during my pregnancy or when she was born. The answer would be 'No'. Again, Jaja was totally fine when she was born until suddenly this autoimmune kicks in. Until now, the medical world is still searching for the answer- what triggers autoimmune?

Another thing I need to share is JIA has no cure. Yeah.. you heard that right. JIA can only be managed by medication. I will usually get 'that' kinda stare again when I said this. Hence I will write about this in my next post. For now, let this video do the talking.

Tuesday, July 17, 2012


When Jaja’s Rheumy contacted me asking us whether we’re interested to join an arthritis awareness event, my heart said yes right away. However, I told her I need to discuss with hubs first. The thing is my husband is now working in KL and we are only reunited during weekends. So weekends are solely family time. Later that night I called Jaja’s Rheumy, Dr. Tang telling her that we're in :-)

Evelyn from Abbott Malaysia called us the next day right after Jaja’s appointment with Dr. Tang. Abbott is the main organizer for the event. The event is actually ‘Meet MY WIRA’ campaign. WIRA stands for Malaysia Women in Rheumatoid Arthritis. She briefed us on the event and informed us that there will be a dialogue session with the Health Minister Dato’ Seri Liow Tiong Lai after the launching. She asked us about Jaja’s history and her current condition. We were being told that they might ask Jaja a few questions like her hobbies and ambition. So I keep drilling Jaja with those questions so that she’s prepared for it.

We drove to Bentong early Saturday. Poor hubs. He just arrived from KL that nite and the next day, he needs to drive on the same road again. We arrived Bentong Hospital at 11:30 am. We were led to the hall where the event will be held and we were introduced to other arthritis patients. 1st patient is Hazira from Alor Setar. She’s 13 and has Juvenile Arthritis since 7 years old. She came with her mother Puan Norliza and her sister. 2nd patient is Kak Eliani (Kak Eli) from Bukit Setongkol, Kuantan. She’s a very jovial person and we clicked immediately.. hehehe.. She just got arthritis 2 years ago and lucky her, she detects it early. So her arthritis condition is under control for now. Later after lunch, we met another 2 patients. Madam Ding Mee Hong is the ambassador for MY WIRA. She has been living with arthritis since early 20s. She’s 50 plus now. She has undergone several joint replacement surgeries because of arthritis. She came with her husband. From the body contact, I can tell how supportive her husband is towards her. Madam Ding told us the importance to get early treatment and join the support group. Some patients can get stressed if the arthritis condition is not under control. She also emphasized on monitoring the arthritis condition regularly with  a Rheumy. The last patient is Aunty Pavarathy. I didn’t have enough time to chat with her because she joined us quite late and she sat quite far from us during the event.

Getting a glimpse of fame :-p
I talked a lot with Kak Norliza. She’s a nurse. She shared her stories on the difficulties that she had gone through at the early stage of Hazira’s arthritis. Same as Jaja, Hazira also got her treatment a bit late because everyone including doctors was not aware of juvenile arthritis. Her arthritis condition is quite severe I think. She still needs to take Prednisolone and MTX. Unlike Jaja, she has to take MTX thru injections L

I’m so glad to meet all these heroes. Most of them were very supportive towards Jaja. They showed Jaja their special fingers and told her, ‘that’ condition doesn’t hinder them from doing routine activities. Jaja has been asking me for quite sometimes why is her little finger crooked.  At least now she knows only special people have fingers like her ;-)

The launching event was simple but yet meaningful. My eyes were teary when they showed MY WIRA montage. Right after the montage Madam Ding stepped forward and shared her stories and aspiration. Abbott Malaysia's General Manager, Mr. Muru Annamalai then gave a very inspiring speech mentioning all the 'heroes' involved in the campaign. Last but not least, the Health Minister of Malaysia gave his ‘sepatah dua kata’ and launched the event.

Hazira, Madam Ding & Jaja
Playing with her Kak Hazira
The montage that made me teary
Madam Ding sharing her story
We had dialogue session with the minister after the launching. Again, my eyes became teary when Hazira talked about how she gets arthritis at the age of 7. Her stories were really heart breaking and inspiring. She wanted to be a scentist! Jaja was already asleep during the launching and was not that ‘sporting’ enough during the dialogue session. The microphone was passed to Aunty Pavarathy when Jaja refused to talk (Penat jek drill questions). I could see Dr. Tang who was sitting opposite us looked a bit stunned and I was a bit discontented. I mean, I got to say something. If not public wouldn’t know the pain that my little girl has gone through. When Aunty Pavarathy was sharing her stories (still teary), I whispered to the MC that I want to say something after that. I was nervous when the microphone was handed to me. I shared with the audience briefly from the day Jaja started limping due to swelling knee, got worsen until she couldn’t walk that went almost one year before she gets the proper diagnosis and correct treatment. I told the minister the importance of creating awareness of Juvenile Arthritis and to get more Paediatric Rheumatologist in Malaysia. My words were a bit jumbled up but I think I managed to pass the message across the room.  The session ended with photo session. At this point Jaja was already in good mood. Nampak sgt anak aku nih cam-whore.. hahaha..

Hazira, Kak Eli, Madam Ding & Aunty Pavarathy
Dialogue session with Health Minister
Dr. Azmilah & Dr. Tang Swee Ping
Jaja with Dato' Liow
I would say the event was a successful one. I wanted to thank Mr. Muru Annamalai personally for the great campaign but I only managed to meet Evelyn at the end. I thanked her for giving us the opportunity to join the awareness campaign. She told me that Abbott Malaysia is going to do a similar campaign focusing on Juvenile Arthritis which I think is a brilliant idea. To Abbott Malaysia, thank you for opening public’s eyes on Rheumatoid and Juvenile Arthritis. Keep up the good work!!