My Polybloodymyofrigginsitis Diary

Learning to ride a bike again...

2007-11-14T23:14:00.000+08:00

Whilst waiting for the post-dive no-fly time to end, had fun doddling around Sanur on a wee scooter. The gallavanting was carried out mostly by a QUALIFIED biker ( attempting to be a videographer here ), but I couldn't resist having a go at the powered wheels, thankfully didn't drop the thing on myself or the poor road, felt like it weighed a ton!

Diving with Mantas!

2007-11-13T23:28:00.000+08:00

Was absolutely awestruck by seeing this amazing creature underwater! What a way to celebrate my first dive trip after a year of fighting this polybloodymyofrigginsitis!

Well that IS me, for those of you who were sceptical ( but I know your worry was justified and meant with love ) that I was going to dive. Can't really see my face cos I wasn't about to turn away from looking at that beautiful beast. And the gangsta hood was to harness whatever warmth I could in the freezing Balinese waters!

Happy Halloween!!

2007-10-31T08:00:00.000+08:00

Had a fab time dressing up this year! The Devil's fork was a great walking stick!

http://www.radio913.com/hallOfFameGallery/category/C17

Long time no post!

2007-10-02T21:21:00.000+08:00

Sorry folks! Been enjoying life a wee bit much recently. And work took over too. Just an update on what's been happening: Went back to Hospital for jungle juice #5 on 7 Sep, but that didn't bring much relief to the silly CK levels. In fact it went up slightly. First time it's done that after IVIG. However, I don't feel any worse. Still dragging at least 2 diving tanks around everyday on my trunk and hips, but I'm able to walk faster without swaying too much. I'm now dependant on one stick only. I can drive like a speed demon if I want to, but reckon it's not worth it, to myself and to others.

Went to visit Redang recently too for Project Aware. Was a bit of a bummer not being able to dive, but kept reminding myself how fortunate I am to even be able to get there!

Bellini Room and the Swing Dancers

2007-08-25T23:04:00.000+08:00

Happy Birthday Janice! Had a swinging good time at Bellini Room, motivation to kick the polybloodymyofrigginsitis to oblivion so I can join in the twirling next time!

Spanish Juices worked its magic

2007-08-15T23:17:00.000+08:00

Glad to report that the IVIG managed to halt the steady climb of my CK levels and slashed it by nearly half to 878!! So guess the plan to infuse me with the goodies every month might finally bring me into remission, I hope! Next round of the drip will be Sep 7. Wonder what new tricks that would induce.

Pumped full of Spanish Juices and Back to work!

2007-08-05T22:48:00.000+08:00

Ok the IVIG wasn't from Australia this time, hence I wasted a night in hospital with the granny circus! 16 bottles of Spaniard plasma had to be infused on the first day, felt trapped to the camping bed, but managed to secure walking releases to the toilet ( refused to go on the comode ) and even had an hour's break to sneak downstairs for a bowl of mee siam. Health personnel make the worst patients I admit. Not to mention that I was working from my hospital bed during the infusion, no thanks to 3.5G I am told. Hope the boss is noticing this, too bad the bonus grades have been decided already. Dreaded the 2nd day of the 16 hr drip, but this time got away with just 10 hrs as the spanish juices were flowing into me at a faster rate. Managed to haggle a twilight discharge. Missed my own bed! The grandpas in my ward were not my type.

Next CK Level measurement ( read: 4D number day ) is Aug 15.

IVIG to the rescue!

2007-08-01T21:04:00.000+08:00

CK levels were 1537 today. Take note: those of you in need of some numbers for this weekend's 4D. The doc wanted to admit me today but I wasn't prepared with my own pyjamas ( their yucky green ones really don't suit me ) and toothbrush (occupational hazard!), hence bargained to postponed it till tomorrow. Don't think they had a spare bed in C-amping class anyway, apparently there's a shortage due to the current increase in dengue fever cases. So the Cellcept ( Mycophenolate ) doesn't seem to be helping much after 3 months, the plan now is to nip the polybloodymyofrigginsitis in the bud with monthly IVIG infusions ( the magic gummy beary juice from Australia ) for the next 3 mths and we'll see how that goes! Have to bounce back by November for that holiday to Bali!

Food to Fatten One up!

2007-07-28T00:44:00.000+08:00

Had some of this lovely grub tonight with a jolly bunch of people. Was introduced to Cat Mountain King durian! Raised an eyebrow at the name, and personally I have no preference, cos all durian is good to me! But check it out!

http://www.stomp.com.sg/stfoodiesclub/taste/03/index.html

Bye Bye Comode!!

2007-07-19T00:09:00.000+08:00

Chucked the ole comode out of my loo tonite! Decided I've had enough of it. Even though it's now more difficult and takes longer to get up from the loo, who said recovery was gonna be easy eh? And if I don't learn to get up from the john like most regular people, those half-squats that I've been doing would go to waste wouldn't it? So farewell dear comode, I've nothing against comodes, I just don't want to need one anymore. The loo is less cluttered and looks more normal now!

Lunch with the-rapists!

2007-07-16T23:47:00.000+08:00

These people are the kindest cruel people in the world, and I love them for it. For hours, days and months when I was in rehab, they patiently tortured me for my own good. Am really glad to have had the privilege of their professionalism, expertise and friendship. No amount of KFC could repay the debt I owe them! ( Not everyone from TTSH AMK rehab are here in the pic, but there's just too many people to thank from the bottom of my heart! ) Even though I no longer attend my physiotherapy sessions there, their advice and motivation stays constantly with me! Thanks to you guys and babes!

The Arena

2007-07-16T11:24:00.000+08:00

Still recovering from the "hardcore" partying weekend, hence pictures with a few words will suffice for now..

Permanent Deafness and Killer Heels Party

2007-07-14T10:43:00.000+08:00

To celebrate my milestone "21st" birthday, the troops are rounding up tonight at The Arena to rock on with John Molina and Krueger. Some say the guy can't sing, some say they are one of the best rock bands here. Who cares? Anyone who can open and close a dive shop in a year and then bugger off to Thailand to set up a satay stall sounds like a character to me. Will attempt to don some killer heels tonite but may not get very far with them!

http://www.johnmolina.com/john-m.html

An impossible amount of THANKS!

2007-07-09T20:20:00.000+08:00

Just wanted to say a very HUGE Thank You to everyone who's been constantly showing their concern and asking me how I am, checking in on me, praying for me, LAUGHING at me and with me, bringing food to me, taking me out for food and fun, stealing my food cos I'm eating too slow or not enough, nagging me, cautioning me, poking me, pep-talking me, all the hugs and kisses ( virtual and non-virtual), cards emails and flowers, shoulders to cry on, tissue paper donations, ice-cream pick-me-ups...all the little things that you guys and babes have done to get me through this silly disease so far, you know who you all are!

Malaysian International Dive Expo 2007

2007-07-07T14:10:00.000+08:00

Procreation : The Circle of Life
(Hypselodoris Bullocki, Tioman Nov 2006)

Extremely chuffed that one of the photos I submitted was selected as a finalist for the underwater photography competition. So even though they stuck it the wrong way up ( that was my fault for not indicating clearly which way up ), I was mighty pleased to see it up on exhibit. ( Pssst Non-divers, it's two nudibranches or sea-slugs having done the "deed", laying the egg nudibranch )

With what we thought was Siang's 1st prize winning picture, but his Jellyfish in sunburst one won instead. Both were very impressive, well done mate! We couldn't find the winner after the competition as he was swiftly whisked away to claim his many prizes, Canon camera, Canon Selphy printer, wetsuit, trip to Ko Samui etc.

Open your mouth and say " Ahh..." The Dive Nutzi Tshirt model with his finalist picture.

Afterwards, we polished off the yummy grub at Jln Tun HS Lee's porridge corner.

Australia vs Singapore 3-0

2007-07-01T18:14:00.000+08:00

One of the highlights of the evening was the match between Singapore and Australia. Of course everyone had their eye out and stuck their necks out for star players Mark Viduka and Harry Kewell.

Harry obliged us with a pic, such a sweetie!

Got an itch?

Kian Yan hard at work trying to capture the moves of the match, and it's her birthday today too! Happy Birthday mate!

The final score

National Stadium Closing Bash

2007-07-01T18:11:00.000+08:00

Joined the Singapore Disability Sports Council contingent at this last do for the old dame. Remember the days in school when I ran on the old track for the Annual Schools Athletics Competition, 800m was my forte. And the days when Singapore played the Malaysian League here, I enjoyed cheering and jeering with my dad at the games.

Tonight it was the Singapore veterans and the Malaysian veterans that had one final go at each other on this nostalgic pitch. It was a respectable draw.

The flame burning for one last time tonight...

Jovin the national sailor, Dr William the national marathoner, me and fungus.

Russell, we vote him the volunteer of the year!

The Final Roar?

2007-06-28T13:53:00.000+08:00

Not been to the National Stadium in yonks, except for the recent meeting with the officials of the Singapore Disability Sports Council. Last time I was there was probably when I was under 10 yrs old, remember watching a football match with my dad. Anyways, this Saturday, we've been asked to take part in the march-past during the closing ceremony of the national stadium. Should be fun, if not for the fireworks and the party organised by Zouk after...

http://www.channelnewsasia.com/stories/singaporelocalnews/view/284931/1/.html

Embarking on a new project

2007-06-23T09:18:00.001+08:00

Today's the day that I'm gonna take the plunge and enter the world of small business. It's nerve-wrecking, mind-boggling, stress-making, but most of all fun, exciting and challenging!
Watch this space!

Note to Self

2007-06-21T23:15:00.000+08:00

Keeping this on my mac until I get in the better habit!

Ventured to Punggol to see Baby Elizabeth!

2007-06-19T15:27:00.000+08:00

Was delighted to visit Daphne and Baby Lizzie, who was born on the 4th of June. Congrats to Baldy, the proud father too, she's the splitting image of you! Elizabeth's such a contented little baby... big yawn after a nice lunch!

Abby, the other baby in the house. Could play with this one cos she's not so fragile!

Come visit again prego!

2007-06-16T22:12:00.000+08:00

How quickly a week has passed! Vikki and her mom Ruth now officially know more and have seen more of Singapore than I have, despite bringing the British weather with them. We thanked them for contributing to our economy and to my bikini collection. Vikki brought me four pairs from my favourite cheap shop in England, Primark. Can't wait to hit the beach properly with the new bikinis. I'm working towards my celebratory dive trip everyday, now I have 4 pairs of incentives as well.

Sailing Saturday...

2007-06-16T16:04:00.000+08:00

Despite a slight glitch in the weather ( I had ordered a sunny day you see ), we still made it for a short sail in the late morning before the rains came.

Marathon Walk to Dinner

2007-06-14T09:44:00.000+08:00

Was out for 14 hours today. Spent all day in the office acquiring Dilbert Syndrome, then I carried out what seemed like a marathon trek from Tan Tock Seng Hospital to Novena Square to meet Janice, Vikki and Ruth for dinner. Had to stop a few times along the way to catch my breath. Though I was walking at a snail's pace, the heart was racing like a Formula One engine. Can't believe how such a short distance was such hard work, but I suppose it was a good form of stamina training.

Dinner was at OrganiCafeXperience, the food tasted good behind the facade of healthiness. We were tickled by the menu of drinks: Flat Stomach Tea, Beauty Slimming Tea...No Big Boobs tea though!

The Eltons are here!

2007-06-12T00:01:00.000+08:00

Finally, I've been waiting for Vikki and her mom Ruth to make a trip to sunny Singapore from Liverpool, England. Vikki's just finished her specialist orthodontic exams, so she is now officially, Dr Victoria Elton, BChD, MFDS RCS Eng, MOrth RCS Edin, MDentSci, MSc. Congrats Vikki! The 3 years have gone by so quickly!

Think I might have surprised them for not showing up in my wheelchair, but I most defiantly left that at home and plodded along with my granny sticks again. We ventured to Clarke Quay to have dinner and catch up by the river, I can't remember the name of the restaurant but it had loads of yummy fish on the menu!

Big Curly Hair Day

2007-06-11T15:01:00.000+08:00

Rolled out of bed today, threw on a T-shirt and shorts and a bit of makeup, and waited for my photoshoot for an article in a women's magazine to raise awareness about autoimmune diseases and disability sports.

Little did I know it was to be the whole shebang, sent by Singapore Press Holdings. Makeup artist Damien Teo arrived with two big bags of makeup and accessories that every girl dreams of having. He seemed disappointed that I had my own makeup on when he arrived. He then proceeded to pile on the eyeshadow, eyeliner, curled my lashes, applied more mascara, blusher, lippie...

Hang on ...this was like 1030 in the morning, and I was looking like I was getting ready to go clubbing! He even took out the flat irons and curled my hair into a twist, to which I did apprehensively protest! But alas...I did not have much of a say in this, so I just played along.

The final photos turned out good, thanks to Calvin Tan, the photographer, though I must say a curly fringe is so not me...takes the edge out of my divenazi reputation! Thanks to Jocelyn Lok for arranging a smooth shoot, and helping to make me feel at ease with the camera.

You'll have to wait for the August issue of Simply Her to see the final pics!

Stamina Training along the riverside

2007-06-10T22:53:00.000+08:00

Left the wheelchair at home today and ventured out from 10am to nearly 8pm with my two trusty granny sticks. It was pure stamina training ( read: shoe shopping ), interspersed with a snack or two....and lots of looking for places to sit after challenging escalators in the building.

I swore I wasn't going to make this look like a food blog (like some of the floggers out there who dedicate their blogs entirely to food pictures) but this was one heavenly dessert I could not resist. Especially on a warm balmy afternoon by the river in the new Central mall.

Fried Mars Bar with Ice-cream

A tribute to Porpor

2007-05-31T10:03:00.000+08:00

My maternal grandmother passed away on Sat 26 May. She was a spritely lady who lived till a ripe old 82 years. She will be dearly missed by us all, and we are grateful that we were able to be by her side as she took her last breath. On a glorious day yesterday, we bid her farewell till we meet again.

Porpor and me on my kiddie birthday...

Still a downward trend!

2007-05-30T00:26:00.000+08:00

Ok, the results were not too impressive this time, but hey, it's still heading downwards, despite a cut in the steroids so that can't be all that bad.

828

Plus I do feel stronger so forget them numbers, who cares!!

Congrats Benny for your most pessimistic guesstimation!

Next CK Level Measurement will be on 2nd July 2007. Fingers crossed it'll continue to drop.

The Hustler is back! And it's time to BET again..

2007-05-25T16:48:00.000+08:00

The winner of the last inaugural round of betting reminded me that I need to put up a new bet for my next CK Level measurement on Tues 29 May. So here goes...

Same drill, leave me a comment, any number is fine, but bear in mind the results should be downtrend ( hopefully ) from 894. If you think I'm getting worse, you may voice it too, but the pessimistic bet may not be accepted!

The winner whose bet is closest to my actual CK readings gets an all expenses paid day trip with me to the Underwater World at Sentosa! ( excluding overseas travel, tank dives and other frilly bits of course, unless you really want to feed yourself to the tiger sharks, that would be entertainment for me )

Adrian 400
Alex 554
Benny 800
Cristine 696
Dave 488
Janice 647
Kian Yan 500
Joyce - "normal levels" (cheerleader extraordinaire)
Pam and Jon - "normal levels" (very optimistic, I like)
Pene 483
Rhona 588 ( starting off in 'kiasu' style eh, this number not as auspicious as previous 888 )
Russell 583
Whye Mun 586 :P

Photos from a Wheelchair...

2007-05-22T13:07:00.000+08:00

As the arms are not strong enough yet, one can use a borrowed monopod to hold up the camera. A cheaper alternative would be my walking stick, though I've not managed to adapt that for my camera yet!

Photography can be a good hobby for the disabled! There's just so much around us that tell a story.

Deep in concentration!
Thanks for this pic Ben and for a good day out!

The Location...The old Kuala Lumpur Railway Station

Railway tracks make a good rusty subject!

So do the underside of bridges...

Tunnelling walkways..

And old rustic trains..

Me and My Wheelchair went to KL

2007-05-19T15:36:00.000+08:00

A huge sense of independence was regained by an adventure up north for a wedding, gallavanting and lots of good food. There were some logistical barriers to get over but nothing was impossible.

Tested out the Singapore Airlines Wheelchair Assistance services and I must say it was efficient and pleasant. My only concern is that Changi Airport's Terminal 2 departure lounge is not entirely wheelchair friendly as there is heavy carpeting leading to all the departure gates. This makes wheeling oneself on a wheelchair very tiresome and nearly impossible if one's upper body strength is not sufficient. Hence I required an assistant to push me to the gate if not I would probably have missed the flight!
Congrats to Hanif and Suraya! This is apparently their penultimate wedding do in a month's worth of celebrations! Yes I am standing in these pics, in heels no less! And trying to hide my walking stick behind me! Couldn't climb up those stairs to stand with the girlies yet, so picked a safe spot on ground level! Thanks for holding my purse dude, it goes with your outfit!

Hobbled into Nigel and Allan's new retail outlet at Damansara Heights. Promised that I would be walking into their new Just Heavenly shop, though Nigel did challenge me to walk from his other place at Bangsar, which is a bit of a trek, even for an able-bodied person. I'll take him up on that when I'm stronger! Or better yet, race him there!

Had a delicious chicken rice lunch under a tree somewhere in Cheras. Sorry but couldn't tell you exactly where! I'm starting to understand that in Malaysia, most of the good food vendors are located under a nice big tree. Rojak, Chendol, Chicken rice...

I had to take a pic of this man and his Putu Mayam bicycle at PJ Section 17's Pasar Malam ( night market ). Putu Mayam is one of my favourite snacks. I can only describe it as a coconuty...noodly...sugary bit of heaven. Managed to walk almost the whole length of the market with my stick and some support. Left the silly wheelchair in the car. Who needs it?

Stopped at an assam laksa store to have a wee sit and gorge on the food we bought.Think Benny's stoned from eating too much...uh Benny!! Pheewit! Over here! Look at the camera! Cris, kick him!

Ah.. finally he woke up when I leaned on him for a pic! Alex is just too "macho" to have a divenazi take a pic with him.

Managed to haul ass into a cab!

2007-05-16T22:25:00.000+08:00

Just thought I'd share a small achievement briefly. Another first...thought I'd shout it to the world again! Waited ages for a cab to get home just now, shared one with Fungus since it seemed to be peak hour for cabs. Was a little jealous that he could independently transfer himself into the cab. So thought I'd give it a go too. Otherwise it would have to be Gina pulling me up into the standing position and then me sitting into it. Anyway, I got as close to the cab's backseat as possible with the wheelchair and then did a most ungraceful manouevre of leaning forward and swinging my ass into the cab grabbing whatever I could with my arms. Weyyyheyyy...Mission accomplished!

I CAN STAND IN HEELS!!

2007-05-15T23:15:00.000+08:00

An experiment today with a party outfit and heels resulted in the discovery that I have enough balance to STAND IN HEELS!! And BOOGIE some to Madonna too!! ( Rescue Me was playing on my iTunes just at that moment ) Can't walk much in it yet, but the day will come!

Ahhh it felt GOOOOOOOOOD....Take a hike, you polybloodymyofrigginsitis!

Can't reveal more than me legs at the moment, cos was trying out an outfit for a wedding this weekend. Will post up more proof if any of you insist after the weekend, hah!

The things that make me smile!

2007-05-14T18:57:00.000+08:00

Saw this the other day when on the way to the hospital. Such a good little doggie, but I must say that I abhor the lack of a safety harness on the dog.

Finally One can Blog again

2007-05-14T10:51:00.000+08:00

Some silly problem with Singnet users not being able to create new posts has been resolved temporarily for now.

Those of you with similar problems of not being able to create or edit your posts for the last few days should try this:

You have to apply Manual proxy settings on your web browser. The more detailed instructions as follows:

For IE 7.0 & below:
Tools -> Internet Options
Click on "Connections" page tab
Click on "LAN Settings" button (if you are using Broadband)
Check "Use a proxy server for your LAN ..." checkbox
Click on "Advanced" button
Under HTTP type, input "proxy.singnet.com.sg" for proxy address and
"8080" for port
Click on "OK" button 3 times to confirm changes

For FF 2.0:
Tools -> Options
Click on "Advanced" tab
Click on "Network" page tab

>From the "Connection" frame, click on "Settings" button

Select "Manual proxy configuration" option
Under HTTP proxy, input "proxy.singnet.com.sg" and "8080" for port

Aye Aye Captain of my own sailboat!

2007-05-12T20:28:00.000+08:00

Stuck my neck in this...literally! Volunteered to join the disability sailing program at Changi Sailing Club, or otherwise known as Sailability, and now I'm hooked! It was a glorious morning and after a short lesson on the ins/outs of the sailboat and some basic terminology and technique, off we went sailing! Loading myself in and out of the small dinghy required a bit of manhandling, but once I was in the hammock, I just sat back and relaxed while I was being launched....but then the booming instructor's voice bellowed " KAREN!!! BEAR AWAY!! SHEET IN!!! DON'T LET YOUR SAIL LUFF!!!" Yes Sir!! Trying to do it as fast as I can!! He was hollering from the safety boat chugging nearby, since I was sailing solo. We did a few rounds off-shore, then in-shore till it became second nature to Tack and Gyb, Ease-out and Sheet-in. The arms and shoulders got a good workout, and the ears were slightly deafened by an overly-nervous captain of a passing oil-tanker, who really should have taken a chill-pill before blaring his horn repeatedly at us. We were MILES away from the safety bouy demarcating his shipping lane! Tsk! Anyway, I don't have any pictures of me IN the sailboat yet but hopefully next time I'll have someone who can be trusted with my camera! There's a mini regatta on June 9, if you all want to spend a lovely relaxing Saturday morning by the water's edge, you know the place to be! Training is on every Saturday morning at 0930hrs till 1230hrs till then!

Note: Single ladies on the prowl...there is good potential at Changi Sailing Club, good-looking social men with yachts...yes YACHTS!!

Woohoo!! A-sailing we go!!

2007-05-09T20:43:00.000+08:00

Just got news today that I got into the disabled Learn-to-Sail program!!Will be starting this Saturday morning! Can't wait!

Thanks to http://www.sdsc.org.sg/learntoplay/

You can check it out at: http://www.sailabilitysingapore.org/

An evening at the track

2007-05-08T23:29:00.000+08:00

Went to have a chat today with the officials of the Singapore Disability Sports Council. We're trying to get Team Handbike to be set up as an official sport endorsed by the SDSC, to create greater awareness of sports for the disabled, as well as the able-bodied.

Anyway there's lots of work to be done, watch this space!

Stopped by the Kallang track to check out the SDSC's wheelchair racers. Couldn't resist giving it a go, I'm up for anything, especially if speed is an incentive!

And the Winner is.....

2007-05-08T09:05:00.000+08:00

ME!!

Just kidding...no honestly, I think I've come out a winner in this, no? For the first time in about 6 months, my CK levels have reached a magical 3 digits....

894

So Rhona....how about that dinner eh? You name the place, somewhere in Bahrain? Or when you come back to Malaysia to visit soon?

Thanks EVERYONE for your tremendous support and for keeping your fingers and toes crossed!

The next measurement will be in about 3 weeks time. Docs lowered my steroids and increased my chemo from today, so we'll see how that trick works soon! Akan Datang!

Taking bets for CK Levels tomorrow

2007-05-06T22:56:00.000+08:00

Will be having my CK Levels measured first thing tomorrow morning! It'll be 3 weeks after my 3rd dose of IVIG. My last reading before the IVIG was 1400ish. The normal range is 30-200. Pretty amazing how things have improved from before when it was off the charts ( >13000 ) in early December. Creatine Kinase (CK) Levels is a measure of how much muscle damage there is in the body, in my case, it's a measure of how active my Polymyositis is.

I do feel stronger than I did before. Not completely out of the woods yet but hopefully the readings will surprise us all!!

Leave a comment and give a specific number. Better with closest margin wins a meal with moi! Go on, you can't refuse, I am a rare breed ya know...

(Will not reveal reading till all bets cease) ** Results will be up Tues 8th May in the morning so get your bets in!

Aaron 1200 ( Eh dude! Ye of little faith or what! )
Adrian 750
Alex 531
Angela 400
Cristine 696
Darryl 500
Dave 777
Fungus 749
Jane 750
Janice 210
Jon 680 (scared to differ too much from wife's expert opinion )
Joyce 70
Kian Yan 1000
Nigel 32
Pamcakes 700
Pene 923
Rhona 888
Sam 719
Simon 727
Vikki 650
Whye Mun 990

The Handbiking Gangsters Part II

2007-05-05T13:44:00.000+08:00

The gang at NYP on Sat morning. L-R: Raja, Aaron, Stanley, Russell ( nothing wrong with him except maybe smokes too much, volunteers to sit in wheelchairs and falls over trying to do wheelies )Mr Raja Singh loans us the very sleek Quickie handbikes. This is also the man who skydived out a plane with his wheelchair, we hear...
Nasri the bad ass

The Fungus (in unmistakable Liverpool jersey) with the lads, Nasri, Aaron and Ridzuan ( or The Ritz )

Aaron pulling a "cool" look. Thing about hairdressers is that they are simply VAIN!

You'll Never Walk Alone

2007-05-03T22:51:00.000+08:00

A friend reminded today that I hadn't updated my blog in yonks!
Yes that is true, what happened to the time between December 2006 to May 2007? It was spent trying to get better I am told. It seemed to have gone quickly, though I remember during the months when I was in hospital, the seconds seemed to crawl by slowly, along with every slow painful movement that I managed to muster with my PM-inflicted body.

Today, I managed a feat which I am proud of. It was a case of "Heave and Hoe...Here we go..." I pulled myself up from a lying position in bed! Most of us would take this simple daily action for granted, but it was gratifying! It was like learning to stand again, or learning to take that first step after months of being bedridden or wheelchair-bound! It didn't matter that I was nearly blue in the face, nor did it matter that my arms felt like they were about to give way. The amazing sense of achievement gives one that much needed boost that things will be okay soon. Time has a different definition when one is struck with a chronic illness.

To celebrate this new achievement, and also to congratulate LFC on their Champions League semi-final win, I'm compelled to put up this returning post with:

When you walk through a storm,
Hold your head up high,
And don't be afraid of the dark.
At the end of a storm,
There's a golden sky,
And the sweet silver song of a lark.
Walk on through the wind, Walk on through the rain,
Though your dreams be tossed and blown..

Walk on, walk on, with hope in your heart,
And you'll never walk alone.......
You'll never walk alone.

Walk on, walk on, with hope in your heart,
And you'll never walk alone.......
You'll never walk alone.

I know I'll never walk alone again, I'll be grateful for every step I take. And I will update this site soon enough..

The Comode

2007-05-03T16:46:00.000+08:00

Never thought I'd use one of these till my granny days, but oh heck...if one needs it, one should be proud of one's comode! Set it to the highest level possible and can just about yank myself up from it now using the grab-bar on the wall in front and the arm-rests. Toilet privacy is achieved finally. Used to have to call someone to come rescue me everytime I had to go!

Hydrotherapy begins!

2007-04-23T16:33:00.000+08:00

Got chucked back in the pool today, by self-request. Always felt that the range of motion of my arms and legs were restricted by sheer gravity that we don't realise about on a daily basis. Polymyositis makes one EXTREMELY aware of gravity. Gravity is not my friend at the moment! Anyway, it was amazing how this was swiftly addressed with the use of just water. I could stick my arms out quite easily in front of me and swing my legs straight into a 90 degree angle, almost! However, I still can't swim on my front as my shoulders are not strong enough yet to push my body weight up. Doing the froggie on my back is not too bad though, although my neck strains a little.

By the way, I was told that the outfit I'm in may be too indecent for hydrotherapy. Yet I was told that I should wear a two piece. Sheesh...this is my most conservative two piece, people... Short of digging out my very dry and shrunken full diving wetsuit, this is all I have to offer for now! Wait till I grow more muscles! Then my boobs won't look so shrunken cos they'll have pectorals again to stick them out! Then we'll talk again about decency!

Will try and get more pics of the equipment that is used for hydrotherapy. Quite simply, ankle floats and weights are tied to one's legs, a spongy tube or sausage as I call it is used and a kickboard is an essential.

The Handbiking Gangsters

2007-04-21T17:17:00.000+08:00

Team SSG Spinal Support Group of Singapore - fab bunch of people to hang out with, if I may say so myself! We gather every Saturday at the Nanyang Polytechnic track and take it out with the handbikes. Those of us who are newly recovering spinal injury patients or otherwise, have the tremendous support of the therapists, therapy assistants from the TTSH AMK Rehab Hospital and numerous volunteers.

Good way to spend Saturday mornings, lots of fresh air, exercise and sunshine! Afterwards, we head to the canteen for makan of course...

The Datuk himself....Chairman Fungus of the SSG....No respect...who cares...he likes this picture of himself with the hot chicks...makes him feel oh so fine...

Russell making sure Aaron's properly strapped in on the handbike. Aaron's put on his flower belt today, it really suits his colouring..

Walking the Wheelchair

2007-04-21T12:50:00.000+08:00

Was supposed to train the arms at the handbiking session at Nanyang Polytechnic with the Spinal Support Group of Singapore. But I thought sod it, why not take the wheelchair for a walk instead? If you laugh at the gait, may you have the never-ending itch and have no nails to scratch with!

Easter is Just Heavenly !

2007-04-08T20:24:00.000+08:00

Nigel and Allan popped down to Singapore over the Easter weekend. I applied for home leave from the hospital over the long weekend, needed another jailbreak. They helped me move my stuff home, their SUV was big enough to haul 3 months of my accumulated junk in hospital ( bolster included, not that I could really hug it! ). I wasn't planning to stay long after I return from the Easter hols. Badgering the doctors to let me out of rehab. It's costing an arm and a leg and we now know that recovering from this disease is a long, slow, drawn-out process.

Went to St. Andrew's Cathedral for Easter Service. It was a lovely service and I even managed to stand for the hymns, which was an exciting first. Allan had to boost me up and I hung onto the ancient wooden pews for support.

Afterwards, we went to chill out at Cafe Del Mar on Siloso Beach, Sentosa. Met up with Danny & Rachel whom Allan & Nigel met at Redang Kalong whilst diving. Drinks with divers and ogling at the gay meat fest at Cafe Del Mar..Life is looking up and becoming "normal" once again...I can even stand up for pictures now, after someone yanks me up!

More Jungle Juice and a weekly Belly Jab!

2007-03-01T16:28:00.000+08:00

Ok they've finally decided what they're gonna do with me. After a few days of stalling and doing the whole dracula routine of sucking more blood from my thin veins, and shoving me in bone density scans, the head of department gave the nudge to give me a second dose of IVIG ( Intravenous Immunoglobulin ). The Ozzie plasma that works wonders for my CK Levels. They've also decided that instead of giving me the chemo drug Methotrexate orally, they'll start giving it to me by a weekly injection in my belly instead. Maybe I'm not absorbing it well enough in my tummy. Yeah, there's too much other good stuff going in, like durian cake and Ben & Jerry's Cherry Garcia. Mmmmm.

Tried to help the medical officer select the best place to stick my cannula in for the drip. Gave him a hint that the veins on the top of my left hand and wrist may look lovely and juicy, but as soon as a needle goes in them, they collapse. Told him not to waste his time there. Go straight for the antecubital fossa ( inside of elbow ). Anyway, the stubborn young doc should really learn to listen to his patients, especially when the patient has some idea what she's talking about when it comes to her veins. He fancied a challenge. I now have 3 puncture wounds to show for it. I let him stick it in where he thought was good, and enjoyed the look of defeat on his face, not once, but twice. Do needles scare me? Never bothered me before but I've lost count of the number of times I've been stuck with one. Funny enough I do dread it now, but I put up with it anyways.

Transferred back to the main hospital!

2007-02-26T16:21:00.000+08:00

Oh well, I went for my follow-up with the consultant at Tan Tock Seng Hospital's main site in Novena and was told they wanted to keep me in for a few days to suss some things out. Psst...they have no clue why my Polymyositis is not responding enough to their tricks! Pulling all the stops now eh...my CK Levels went up to 2500 from 1700. Progress in Physio has been rather flat and I haven't put on any weight. I look anorexic, probably no thanks to the chemo drug, Methotrexate that I've been on for the last 7 weeks. At least I got a nice two-bedded room for a change. They ran out of space elsewhere.

Jailbreak to hit the BEACH!

2007-02-25T11:43:00.000+08:00

One is allowed to make an occasional escape from rehab hospital. Of course there's a lot of paperwork to be filled in, and one has to bribe and convince the doctors that there will be no medical emergencies. Rehab medicine encourages patients to take a break from the hospital environment to prevent institutionalising a patient. Hence 'home leave' is encouraged...I decided to take BEACH LEAVE....Hey, it did wonders for my waterbaby soul!

Jennifer was back from Chicago for a visit and Alex was in town! Too bad I couldn't get in the water yet!

The OB Arm Machine

2007-02-10T19:29:00.000+08:00

Nearly sounds like ObiWanKenobi. I really could use some his 'force' right now. I've been huffing and puffing on this machine for weeks, and my scapulas ( shoulder blades on your back on each side ) are still somewhat frozen. Lost most of the muscles in my trunk, which a very good number of them support the shoulder, scapulas and back. The good thing is I can now sit in a wheelchair without completely crumbling. Here we go again...huff and puff and try to move the arm in any direction. The elbow-gator (splint) is on to stop my elbows from bending which is a natural tendency when one doesn't have much upper arm muscles.

Robogal is in da Easystand

2007-02-01T10:11:00.000+08:00

I've been asking the therapists ( also affectionately known as the-rapists ) when do they think I can stand again. The last time I was able to stand up was on 4th Jan, that's nearly a month ago. I was anxious to know whether I would be able to stand again. The whole bedridden thing just doesn't suit me. I'm normally up to far more monkey business on the ground than on the bed ( hmm, now that might start another debate! ) .

So they decided to stick me in this contraption called the Easystand machine. I was transferred into the seat first, then straps and a harness were attached to my chest, waist and hips. My knees were secured in place and foot straps were applied. Then like a carjack, I was pumped up into the standing position. I could feel my body weight passing all the way down my spine, through my hips and then onwards through my calves and onto my feet. I didn't feel dizzy, though as a precaution, a blood pressure cuff was attached to my arm to monitor my pre-standing and post-standing blood pressure. There was some pain in my back, hips and calves, whatever muscle that was left was being tested.

I stood like this for 20 mins, and was given some gooey dough to play with on the pyrex tabletop to "shut me up" I was told. I made a curry puff, a tooth, and a snail out of the dough, before they said " time's up ". Hey! Leave me like this for longer, standing is cool, even though I wasn't really standing on my own. Can't wait for more of these Robocop sessions.

I am the World's Greatest!

2007-01-29T19:56:00.000+08:00

Got hooked to this song by R Kelly...from his Chocolate Factory 2003 Album. It's my energy song. It's what keeps me going when the going gets tough! Straining against machines day after day that have been set to zero weight and still not being able to pull, push, or lift can get one's morale pretty low. But there is hope, when my backs against the ropes, I can feel it...I am the world's greatest!

I am a mountain
I am a tall tree
Ohhh, I am a swift wind
Sweepin' the country
I am a river
Down in the valley
Ohhh, I am a vision
And I can see clearly
If anybody asks u who I am
Just stand up tall look 'em in the Face and say

I'm that star up in the sky
I'm that mountain peak up high
Hey I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it
I'm the worlds greatest

I am a giant
I am an eagle
I am a lion
Down in the jungle
I am a marchin' band
I am the people
I am a helpin' hand
And I am a hero
If anybody asks u who I am
Just stand up tall look 'em in the Face and say

[credit http://www.songlyrics.com]

Do McDonald's deliver to a hospital bed?

2007-01-12T12:00:00.000+08:00

The Answer is Affirmative.
We tested them out and had a hearty Chicken McNuggets, Fries and Apple Pies supper at 11.45pm delivered to Tan Tock Seng Hospital Ward 12A Bed 2. My mate Adrian's making sure the drenched delivery guy is ok.

My legs are giving way!

2006-12-31T19:43:00.000+08:00

Got up from the wheelchair today after taking a wander around the hospital, and crumbled to the floor. It was totally without warning. It's as if my brain and my legs are not talking to each other anymore, or my brain thinks my legs are strong enough to sustain my body weight but the legs definitely disagree. Nothing's broken, maybe just a bit of confidence and pride at the least. Oops..the nurses had to fill in an incident report...

Hooked up to this and that...

2006-12-28T19:06:00.000+08:00

The pain's getting bad...breathe...even breathing hurts...I pride myself in having a high pain threshold, both physically and mentally, but dang...it's burning, aching, searing, ripping....all put together....Can't really describe it, nothing like I've ever felt before. Trying to shift myself in bed feels like I'm trying to tear my own muscles apart. Everything from my neck down to my knees is on fire. Thank goodness they are hooking me up to some magic gummy-beary juice as someone put it. Pulse steroids flowing through my veins...trying to get the inflammation down. My body also feels like it weighs a ton. More diving tanks strapped down to the divenazi...

But can I go home before the New Year?

Back in the Hospital AGAIN

2006-12-27T21:01:00.000+08:00

This morning, I waddled into the Rheumatology, Allergies and Immunology clinic of Tan Tock Seng Hospital with a referral letter from National University Hospital. I sought another opinion here but didn't leave the clinic. I was told I needed urgent admission. It's a few days before the New Year!! Fix me before then, people! I'm not spending my New Year's in bloody hospital ( excuse my language )!!

Christmas Day like no other before!

2006-12-25T22:27:00.000+08:00

Something was not quite right this morning. I couldn't pull myself out of bed, not matter how I tried. I shifted painfully, dragged my arms and legs to whichever position I thought would help, I just could NOT get out of bed. It was like someone or something was pinning me down. I knew what the something was, it was the polybloodymyofrigginsitis. But the someone may have been a greater unseen force. Yelled to my mom and said hey, if there was any chance that I was gonna make it to church for christmas morning service, someone's gotta come yank me out of bed, and I need a wheelchair too! Hence the day went smoothly considering...that I was losing my mobility fairly rapidly...

I'll be checking in with the consultants tomorrow....

Going to the toilet ain't so easy anymore...

2006-12-24T19:42:00.000+08:00

I like to have a little sit on the 'ole john sometimes, I know it's bad news for the rectum. An unsupported rectum sitting on the loo reading the paper spells trouble with haemorrhoids. Today I avoided sitting on the toilet if at all possible. Why? Well simply because, once I'm down, I can't get up!! It's like a ton of bricks attached to my waist and no matter how I push off, the thighs which are on fire right now, just cannot seem to lift my body weight off the john. Polybloodymyofrigginsitis...

At least this might train me for the annual air-piss competition at Ko Pha Ngan's Full Moon Party! Woohoo!

(No I have no picture to show of me struggling to get up from loo..nor air-pissing ...so not funny!)

Dared to venture north with polymyositis... Whye Mun at The Attic!

2006-12-23T14:37:00.000+08:00

How could I turn down an invitation to watch a magical Christmas performance by Cameronian Awards Best Solo Performance nominee Whye Mun at The Attic? Despite the inability to climb stairs or walk very well at this point, I made it to this pleasant nook in Bangsar with the help of some very lovely people, one of whom single-handedly carried me up the long flight of stairs to the third storey. ( Yea, Daniel, he da man! ) It was a refreshing change from house arrest with my medical cocktail. I love the festivities of the Christmas holidays...when the merry-making is in full force, it's not just the alcohol-induced warmth of those around you that you feel.

Big Strong man Daniel, the human stair-lift...Sorry Chui, shouldn't inflate his ego anymore eh?

The people who make us laugh!

2006-12-22T14:05:00.000+08:00

Nigel the Friendly Boxfish....This was taken after our trip to Tenggol in August, but thought I'd put this up here if anyone needs a giggle. Non-divers, please ask a diver what a boxfish is.

Also starring the 4 hunkydories...we shan't name any names...

The Tenggol Diving Gang. Had a blast!

I AM going to do these things again!

2006-12-21T19:08:00.000+08:00

Got them stitches out!

2006-12-21T00:01:00.000+08:00

This poor right leg has suffered most of the war wounds in my short life. The knee has evidence of hockey battles on the pitch. Now to add to the permanent scars...a lovely centipede as a reminder of what is now the biggest challenge of my life! The biopsy report did read "necrotising myopathy compatible with polymyositis". We're still awaiting the electron microscopy report, but am not expecting it to say any different. Sprayed it with Opsite to keep the buggins away. What tattoo do you think I should have over it?

No big fan of needles but whatever works!

2006-12-18T23:24:00.000+08:00

At the acupuncturist to humour me mom...no seriously, at this point, I'd try anything! ( well, within reason )

What is Polymyositis?

2006-12-18T18:57:00.000+08:00

Polymyositis (PM) is an uncommon autoimmune disease which causes inflammation leading to destruction of muscle and increasing muscular weakness. As the disease progresses, muscle tissue may be replaced by functionless scar tissue.

The cause of the disease has not been found. It begins when an unknown trigger stimulates the immune system to spontaneously produce autoantibodies against normal healthy tissue. Some researchers speculate that there may be an infective element involved such as bacteria, parasites or viruses. However there is no hard evidence to date. it is also not known to be an infectious disease, hence it is not passed on from person to person.

The muscles affected are typically those closest to the trunk or torso, or what is known as the proximal muscles. The muscles in the hips, thighs, shoulders, upper arms and neck are usually affected. This results in weakness that is symmetrical, affecting both the left and right sides of the body. This muscle weakness can be moderate to severe.

The signs and symptoms of PM can occur gradually, so it may be difficult to pinpoint exactly when it may have started. It can occur over days, weeks or months, and the symptoms may fluctuate from time to time. The loss of strength in the proximal muscles can be noticed as difficulty getting up from chairs, climbing stairs or lifting above the shoulders. Trouble with swallowing and lifting the head from the pillow can occur. Occasionally, the muscles ache and are tender to the touch.There may be a general feeling of discomfort or fatigue. weight loss and/or a low-grade fever may also be present.

Polymyositis is more common in females than males, the ratio being about 2:1. It can affect all age and racial groups, but it is usually rare in people below age 20. About 60% of cases occur between 30-60 years of age.

PM is a chronic illness with periods of increased symptoms, called flares or relapses, and periods of minimal or no symptoms, known as remissions.

It also can affect other areas of the body and is, therefore, referred to as a systemic illness. Occasionally, it is associated with cancer or with other diseases of connective tissue such as systemic lupus erythematosus (SLE), scleroderma and rheumatoid arthritis. Hence it can be a difficult disease to diagnose as the symptoms may mimic other connective tissue diseases.

So how did this happen?

2006-12-18T16:42:00.000+08:00

Who knows?! All I know is that I have always been a fit and healthy person, never been particularly sick all my life apart from the usual coughs or colds.

I've always been active in school. I was in gymnastics, athletics, cheerleading, field hockey, and loved the outward bound school trips to East Malaysia. I love the great outdoors and sometimes the great indoors too. I suppose some things like bowling and wall-climbing are done indoors! I usually get up to some form of monkey business, be it flying halfway across the globe to ski in Whistler or trekking across Sri Lanka and Cambodia doing voluntary dental work. I even managed to throw myself out of a plane at 14000ft in the UK with the help of a tandem skydiver. I took up scuba diving this year, and made several trips in Malaysia to explore the underwater world which was a thoroughly enriching experience. I should mention that I had a phobia of the sea before, it must have been from watching too many JAWS movies when I was growing up.

So when this disease hit, it was a bit of a shock, though I probably did see some warning signs the week before I went to hospital. I was fatigued but I thought it must have been from starting my new job, or perhaps I was coming down with the flu. It was only when I realised I was struggling to put on my own clothes, and getting my legs in and out of a car, that alarm bells started ringing in my head. I was having trouble doing normal everyday things; getting up and down a bus, chasing a bus (!), walking up stairs, brushing my own hair and trying to tie it up. All these tasks felt unusually difficult. The brain would tell the legs to move but they were just not responding like normal. The only way I can describe is like there were diving tanks strapped to all my limbs as well as my front and back.

Kick up the backside

2006-12-17T13:27:00.000+08:00

This morning I had a moment of weakness. I'd love to blame the drugs for these crazy mood swings, but I know it's mind over matter. I need to kick these morning blues up the backside so this body can get up to the usual mischief again!

Elephantitis has set in!

2006-12-16T19:16:00.000+08:00

Ooo...these are nasty pics, but one has to see them to understand the water retention that is taking place in my legs from the inflammation of the muscles that are breaking down. The kidneys are struggling to clear it and being damaged as we speak. Sorry about the grim toenails too, I can't reach them to paint them!

Off to rest the weak body..

2006-12-15T12:04:00.000+08:00

Just when I thought that maybe I'm starting to slowly beat this thing after a week of steroids, the docs tell me that actually the muscles are not too happy. My CK ( Creatine Kinase ) levels went back up from 9743 last week to 12879 U/L yesterday. Normal levels should be between 20-300 U/L. That's a marker for the amount of muscle damage that is taking place. At least my kidneys are still holding up ok! Oh well....guess I'll try to live up to my t-shirt.

My new morning regime

2006-12-15T10:43:00.000+08:00

Since I'm on house arrest after bartering a discharge from the hospital, I thought I'd share my thoughts slowly about the past few weeks on this blog. But first of all, let me introduce my daily cocktail of wonder drugs....

The right eyebrow is a multivitamin, all the goodies that we busy people need to sustain our good health. I have been taking this fairly regularly in the past. Perhaps not as disciplined as I should have been, but I didn't see the need to be absolutely religious about this since I was a fit, healthy and bouncing person eating a well balanced diet. Anyway, this will become a daily fixture now, no harm popping one of these everyday.

The left eyebrow is the Calcium and Vitamin D supplement. This is to stave off the early onset of Osteoporosis, which is a common side effect of the smilie below.

The right eye is Famotidine, a proton-pump inhibitor that helps to prevent or reduce gastric ulceration, which can be caused by the nose and particularly the smilie. I have to take this in the morning and in the evening.

The left eye is the Potassium tablet. This will help replace the loss of postassium, which I will be weeing out at an increased rate due to the diuretic ( the white half-tablet tash ) that I've just started taking this morning to reduce the uncomfortable water retention in my legs.

The orange nose is Diclofenac, a non-steroidal anti-inflammatory drug. Essentially a painkiller with the added property of damping down inflammation, which is affecting my proximal muscles at the moment.

The white half moustache is Frusemide, the diuretic which is supposed to get rid of my elephantitis, as I call it. Water retention in my legs, especially the lower half. This was noticed before I went into hospital, but it has since gotten worse. Towards the evenings, my legs feel and look bloated, and the skin becomes very taut.

And finally...the evil smilie...9 tablets of Prednisolone, the wonder steroid that is supposed to tell my immune system to stop being daft and attacking my own muscles. Only problem is that the pred is non-specific, so it basically tells my immune system to switch off, period. Hence all the side effects and potential health problems that it can bring about. More about this later on when I get round to explaining what polymyositis is all about.