J meets the AS doctor!

The Ankylosing Spondylitis (AS) patients in J's support group met up for an annual dinner thingy and this year, the hospital invited Dr Asim Khan. J was to introduce him before he gave his talk and after the whole event, he grabbed the opportunity to get the man's autograph!



When J was diagnosed with AS in 2005, we were desperate for answers. We found them in the book that Dr Asim wrote. It was the only copy in Kinokuniya, which probably explains why none of J's friends in the support group has read it. AS is a chronic, progressive, painful inflammatory rheumatic disease. However, because J does not complain even when he is in immense pain and he tries not to let the illness cripple his life, many of our friends and even our families don't know or think much of this disease. We are grateful that the attacks come on and off and he is not in excruciating pain 24/7. Plus, there are now drugs that can combat the pain to a great extent. The down side to the drugs? Possible heart failure. :(

Nevertheless, we are thankful for each day and certainly we draw inspiration from Dr Asim, the doctor who has the disease himself and devotes his life to finding ways to help others with the AS.

Read about Dr. Asim Khan's story here.

Desperation

I have fallen sick way too many times this year. The plan to fight the sick monster includes an ionizer, loads of vitamin C tablets and probiotic capsules. NO MORE MCs from now to December I pray!

April

came and went and boy am I glad!

The month saw me busy right from the start. Deadlines were impossible but continued to stream in like nobody's business. At least once a week, I slept at 4 am on a work day. While I know many people who can survive on just a few hours of sleep regularly, I can't. I turn 36 in 2 days time but I still need at least 8 hours of sleep daily. 10 hours if possible!

Thanks to the crazy work schedule, my body took a beating and I fell terribly ill towards the end of April. Even on the 2 days I was on medical leave, I was pushed to produce 2 separate piece of work. No, it's not the cure to cancer but for some inexplicable reason, the papers were important to the people who set me the 24hour turnaround deadline.

The end results? 2 pieces of work produced, 2 trips to the clinic, 3 days of medical leave, 7 types of medicine and 1 pregnancy test.

The last was a shocker. Pregnant?! Are you kidding me? I haven't even the time to  sleep, much less get pregnant. But the good doctor insisted on playing it safe. He thought it was weird that I was feeling so nauseated all the time and got even more worried when he found out that the last menstrual cycle was unusual. I told him it was probably a bad case of flu and gastritis but nope, the doctor was bent on me taking the test.

Of course, I am not pregnant. 

So there goes money down the drain.

But every cloud has a silver lining. J learnt how to cook porridge because the doctor had given strict instructions that I was not to eat oily or spicy food. I know porridge is  not really difficult to cook but considering how he never has to cook it till today, I'd say he did a pretty good job!

Oh and did I mention that I bought a happycall pan for J? He saw the TV ad and decided he'd like to experiment with the pan. I'm happy to eat whatever he cooks with it, as long as I don't have to do any work in the kitchen!

The story of a man and three women

These are J's favourite food for CNY. Every year without fail, he buys and eats tons of these. Me? I like neither.


Muay Chee - a sort of sweet glutinous rice based treat.


Ba Kwa (肉干) - roasted dried meat. The Asian version of beef jerky? Just sweeter and juicier. Mind you, not any brand will do, only the one shown in the photo above.

Every year, I'll tell him to eat in moderation. He ignores me every single time.

Enters his mother-in-law who only has to say it to him once how we are what we eat and obediently he will stay away from these food for a good few days. This pattern repeats every year without fail.

My mother-in-law? She joins him in the merry eating! Hahaha!

Morning madness

Mom had surgery recently and I stayed over to look after her. On the morning I was to take her back to the hospital for her medical review, I grabbed what was to me a bottle of sugar and dumped a teaspoon of it into my coffee.



Big mistake. Turns out it was salt.

The question you might ask, did I drink it?

And the answer is Yes.

Salty or sweet, I need my morning coffee and there was no time to make another cup!

AS related

J's AS condition flared up recently and almost every other day we have to deal with a different situation. In the most recent episode, his right foot started to swell. The usual pain killers he has did not work. I was desperate and thought icing it would provide some relief.

It was then I realised we did not have an ice pack. We threw ours away when we moved 2 years ago. So I grabbed a ziploc bag, filled it with ice, wrapped it with a towel and tied it with a rubber band.


You'd think J would be a little cheered by Mr Happy's smiley face. Alas he didn't even notice it.


In the end, the swell remained. The foot looked red and angry. The pain would not go away. We went to the doctor to get more medicine.

I hate AS. HATE it with every bone in my body. :(

Bacteria

I never thought this day will come.


But I have been told to eat bacteria. That's right, bacteria. Apparently my body lacks and needs 'good' bacteria. Yakult is not enough.

The good doctor first prescribed the stuff in powder form. He gave me many sachets and told me to dissolve it in water and drink. It smells like bananas but tastes foul! I mixed it with apple juice, drank it in one gulp and wanted to retch. Ondine tells me her 3 year old daughter, Jordan, is less of a baby than I. Read: she doesn't make a face, pinch her nose, or whine when she has to drink it. Me? I rather drink oil.

But the bacteria is a must, like it or not, and the doctor decides I will take it in the pill form instead. Can you say YUCK? :(

Jay and J

This is somewhat related to the last post.


If you don't already know, Jay Chou is also a sufferer of AS. According to some tabloid report, he once took 12 pain killers before the start of a concert. If that is true, my heart goes out to him. I have seen J in pain, I have seen J take an insane number of pain killers in desperation to numb the pain. I cannot however imagine J having to take on the stage and sing and dance like there is no tomorrow after popping all those meds. So yes, I feel for you, Jay Chou.

The NSAIDs may be effective but they also have side effects. Arcoxia which J takes in high dosage can cause heart failure apparently. We don't know what will happen in the future and it isn't that we don't care. But the pain is so excruciating that to live normally, J cannot do without it.



But Jay Chou is also one of the lucky few who got diagnosed early. We read somewhere that he was not enlisted with the army because of AS.

Seriously, I rather do national service than be plagued with this disease. Then again what am I talking about?? I have neither the disease nor the desire to serve the nation as a soldier!!

I have however acquired 4 of Jay's albums in a few days and am enjoying every bit of his music. :)

Current read

J has had this book since he was diagnosed with AS 6 years ago. I never got around to reading it properly because each time he has an AS attack, I am more concerned about his pain, his intake of pain killers and his therapy sessions.

Recently I picked up the book because I realised that hell, I know nuts about AS except I have a husband who has the damn disease! So yes, it was embarrassment that drove me to read it.

Now, I have model answers for people who quiz me no end on it.

• Ankylosing Spondylitis is a chronic, progressive, painful inflammatory rheumatic disease, which affects the spinal joints, in particular those at the base of the spine.


• AS typically affects young people, beginning between the ages of 15 and 30. The average age onset of the disease is 24 years, but it may range from 8-45.


• AS usually starts with a chronic low back pain and stiffness which in gradual and insidious in onset. It can take a LONG time, on average about 6 years (for J, it was 10), before the correct diagnosis is made.


• Over many years, AS can result in gradually progressive stiffness and limitations of spinal mobility and also restricted expansion of the chest. (J is already experiencing all these.)


• There is no cure for AS but the symptoms of back pain and stiffness usually respond well to non-steroidal anti-inflammatory drugs (NSAIDs) and a regular program of physical exercise. (Oh yes, Arcoxia is J's best friend.)

Interestingly, the author, Dr. Muhammad Asim Khan, is a rheumatologist and also suffers from a severe form of AS.

I wrote this post in 2006...

And I am reblogging it with nostalgia. Things have changed since then. My father is 80 and my mom turns 75 this year. While both are still relatively mobile, they also make very frequent visits to the polyclinics and hospitals every other week.

Last week, I visited TTSH thrice. Twice for my mom, once for J's therapy.

It wasn't fun.

This week, I took leave from work to accompany Mom to the hospital again. I don't like this reversal of roles where I have to take care of my parents when they are sick. It is one of those things which I am good at but I rather not do.

One word says it all - heartbreaking. :(



**********

31 May 2006

My folks and I spent some time out yesterday. To me, these little trips are significant because they are rare. My folks are in their 70s and not as mobile as before. In addition, I have inherited mommy's 'I much prefer to stay at home' genes so getting the 3 of us to go anywhere is really miraculous.

But yesterday was the death anniversary of my grandaunt. She was somewhat like a mother-in-law to mom and it's been 28 years since she died. Earlier, I promised my folks I'd go to the columbarium on this day. A promise is a promise and when one has folks in their 70s, one should not take for granted that there is always another time to fulfil that promise.

So we took a cab to the place and later 2 buses home because they wanted that ride on the bus. I used to think that the choice to take a bus over a cab was to help me save some money and would protest in my loudest voice. Now, I realised that they truly enjoy the bus rides from time to time and I think they too realised that they should enjoy these little things in life while they are still mobile.

The trip took us a little less than 2 hours. Yet in that time, I have learnt a few things.

The roles have changed. Dad walks the slowest among us 3. Even Mom with her arthritis walks a lot better than he. Sadly, the mild strokes and heart-bypass really showed their effects on him. When I was little, Mom and Dad used to take me to the now dysfunctional Clifford Pier. I remembered how they would walk and walk and walk so fast that I would complain that my short little legs were tired.

It used to be that they held on to my tiny hand tightly protecting me from danger. Now, I guide them to cross the street, praying fervently with every step we take.

Taking the bus is no longer a dread. I celebrate every bus trip because each one shows that they are in good health.

Riding on the bus is a new journey. I do not grab the first seat I see like I used to when I was a kid. I grab the first TWO seats I see for my folks and stand protectively nearby.

I am not sure if I like the change of roles. Not that I do not like the responsiblity of looking after my folks but the idea that they are no longer that strong and powerful, the way I see them in all my growing years, makes me sad. Add on the fact that I do not live with them anymore and can only spare a day or two in a week with them, I am regretful for all the times I had brought them pain and not loved them enough.

But regret is a waste of time. What is most important is I cherish the time we share and perhaps help my siblings to see that too.

Sudden craving

for Youtiao (油条)

This picture makes me happy because this was taken last weekend when J was eating well. We thoroughly enjoyed our Youtiao with Kopi then.

Since yesterday, he's eaten only porridge and now looks gaunt. All because 2 nights ago, his stomach went haywire after a meal of fried rice.

Seriously, fried rice??

You would think that's a very common food, right? But it gave him so much pain that he could not sleep for over 24 hours. Even the first round of meds prescribed by his doctor did not help and last night, he had to see the doctor again.

Fried rice should not = Stomach cramps + vomitting + diarrhoea.

We are never going back to that stall again. :(

Scarred

Yikes! 'Scary' pictures in this post.

J went to the National Skin Centre last week. I thought it was just for a consultation.

Turned out the specialist felt the mole near his neck should be removed and did it on the spot.

Gabriel, who is J's GP, had noticed the progressive growth of the mole and sent J to Madeline, the specialist. Basically we trust Gabriel and follow his instructions very carefully since he was the one who managed to diagnose J's Ankylosing Spondylistis (AS) condition. For 10 years, J was in pain and all the other doctors could not tell him what was wrong. That was very torturous.

This was taken last week when he had the sutures. Madeline sewed him up twice, internally and externally. J told me the growth was the size of a rivet and actually went a lot deeper into his neck. Yikes!

Yesterday, the stitches were removed. There will be a scar but we were terribly relieved when Madeline said the growth was benign.