A tribute to Porpor

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!

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..

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...

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

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!

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!!

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!

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

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!

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!!

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

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.....

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

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

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

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

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!