Thursday, March 31, 2011

Moving forward

30 March 2011

Wednesday seemed like an ordinary day. I had finally got an iPhone 4 upgrading from my previous iPhone 3GS. I had to go to the 3 store to get a microsim for it. After all of it was done I had yumcha with the folks and Fiona then it was home for me.

I napped a bit when I got home. When I woke up my aunty Sally came over with my cousins and sister, Christina. We played a game of dominion as I taught them how to play it. After the game they had to leave.

I watched some motivational videos on YouTube and these vids made me think theres no reason to be sad. The links are... and
I watched these when I was sitting in the front yard. Being outside is awesome as the breeze and fresh air is nice. The only thing that rivals it is the fresh air in the mornings when my uncle opens the front door as I have breakfast.

Henry was going to visit after uni. I called my cousin Partrick to come over to hang out and to meet Henry. I asked Henry to buy me a bottle of hand sanitiser and some lollies. We talked until it was time for them to leave.

Wednesday, March 30, 2011


29 March 2011

It was Tuesday time for my appointment with the rehab hospital or so I thought...

I left my uncle's place well now home at about 9am. After getting to the rehab place it was going to be quite a walk so I wanted to sit on the walker and get pushed. I should mention the walker has a seat, probably for when you get tired of walking. Anyway so I got pushed to the entrance and the entire thing fell over and I fell backwards as a result. 

From the accident I felt nauseous and vomited as a result.   Fearing a concussion the physiotherapist advised me to go to emergency at the normal hospital. 

At the hospital I bumped into the doctor that was responsible for getting me tested for ALD. It had been many years since I had an appointment to see him as I was no longer a child. I had some faintness and some shortness of breath, the doctors and nurses kept me at emergency. I eventually had a CAT scan and got cleared to go home. 

Tuesday, March 29, 2011


27 March 2011

Having getting home and sleeping at like 3.30am I slept in and woke up at 1pm this time I actually slept rather than getting woken up at 9am for my medicines. I woke up and had some food then took my meds. I insisted on staying home and sleeping while he family went shopping. My younger sister, Fiona, was staying home to study but my mum fearing I would distract her said I had to go to my uncle and grandma's house. So I got ready to go, getting my laptop packed.

At my uncle's I ended up sleeping when I got to his place. When I woke up I tried to move and slipped off the sofa onto the ground. I decided at that point well the other night to move over and stay there as the bathroom is downstairs since its a one story house. So I got driven home and asked my sister, Christina, to help me pack for a few days as I could easily get more later since my home is close to where I would move.

After dinner at home and a quick shower it was time to go. I had a teary goodbye since it was the first time I would sleep elsewhere with no intention of returning. I think i'll skip on monday and the next post will be about tuesday.When I moved Goddad became the first visitor as i called him to play the board game (dominion) I was given the other day. Allen came over later to visit and play the board game.

So i moved in with my uncle Keanu as going up and down the stairs is both dangerous (i could fall) and tiring.

Monday, March 28, 2011

saturday the 26th

26 March 2011

On this day it was planned that I go to the city store to draft and play a board game (dominion). I , well my parents decided the night before that I should use the wheelchair rather than walking frame. I got picked up at around10.30am by Hyok and we were off to the city. When we got to the city Hyok wheeled me to the store and I walked up the stairs at the store using the rails while Hyok brought my wheelchair up. We had some lunch from McDonalds,the grand chicken I got tasted really good though eating it is messy. Then I taught Hyok how to play dominion and he really seemed to like it he wanted to play again but I was fine watching the magic games near me. He taught Pradeep aka Prads how to play it and then we played a game of it as we had time before the draft.

We got 8 people total for the draft. I ended up 2-1 losing in the finals to none other than Prads, I came 3/8 for that event. The draft was really fun.In round 1 I got to play against Almerick aka Almo and a string of luck gave me a wini well I should say a run of badluck for him. Round 2 I played against Surapat I only won because I had tons of removal for his blockers. The last round which I mentioned I lost was a close match. After the draft Boney arrived and I had some dinner, fast food again, this time a zinger burger from KFC. While I ate Jack got there. Hyok, Prads, Boney and Jack learned and played dominion while I watched and we waited for Hasharna aka Hash to get to the store.

Next we had an 'uber' draft. I didn't do so well and came last in that draft we did. I was too tired for more magic and we agreed to no more ordinary drafts for the night. We played some dominion and after that we wanted to play more, so we went to Jack's place which is close to the store. Before we left the city I got supper from McDonalds , this timea McChicken. What an unhealthy day ¾ meals I had was fast food.

At Jack's place we played two games of dominion and then we left his place. Hyok drove me home before he went home himself.

What a day I left my house at like 10.30am and didn't get home till about 3am. When I got home it was brush my teeth and straight to bed. I'll post up my sunday and monday later tonight.

Friday, March 25, 2011

just a thought

25 March 2011
So I type on the netbook but a key at a time so it frustrates me as I think way faster than I can type. Keeping this and future entries short. I went to the family doctors and he said think about the other people in the world that are suffering. Thinking about that doesn't make me feel happier. The Japanese quake and tsunami it makes me think how powerless I am and how minuscule I am in the world.

I'm sorry that this is all i can manage

Thursday, March 24, 2011

the brink

24 March 2011

i'm getting too tired from going upstairs for the bathroom and I don't want to stay in my bedroom all day which I will do for the next week or so. My family has to move to a house with a downstairs bathroom to make it easier for me. In the meantime I have decided to move and live with my uncle and grandma who has a downstairs bathroom until my family finds a place.
I'm sorry but this is all I can really manage to type

Monday, March 21, 2011


21 wednesday 2011

I was thinking about what my sister said earlier about the saying “its always in the last place you look” its a bit obvious that you'd stop looking for an item after you find it so its oin the place you look.

I'm getting worse as the days go on. I don't like waking up and discovering something else that I could do I can no longer do. For instance when I go to the bathroom for a number one I can no longer stand up as I concentrate on standing too much and cannot start the stream. Its troublesome to go to the bathroom a lot as it's upstairs so I try to only go when I have to. That means i'm rarely drinking a lot of water during the day, its only whn I stay upstairs in my room that I will drink plenty of water. All that will change when my family moves to a place with a dowenstairs bathroom. The actual condition doesn't sadden me but how it gets worse when I think that I got the hang of things.

So what is it that I do all day now? When I feel well enough I can play some mtgo on the netbook or the computer. But most of the day is soent streaming videos on youtube using my iphone some of the things I like to watch are dota commentaries, sc2 commentaries, wong fu stuff and random things. I get bored and tend to nap a lot of the time. I also watch tv a lot now as there really isn't much to do when I just lie on the couch.

Sunday, March 20, 2011

walking woes

20 March 2011

Friday morning
Here's more of a detailed update. So I hurt my left foot I couldn't put any pressure on it, so that meant it hurt to stand. Went to see the physiotherapist, I think he was Mr Wang , it hurt so much that I gt carried downstairs in the morning in the house and then I was carried into the physiotherapist from the car by my dad.

Anyway at the clinic I was to undergo some electric therapy on my leg to ease the bruising. Think of it like a light flick because that's what it felt like for 30 minutes. Yes I got electric shocked for 30 minutes through 2 leads connected to my legs through some needles. After the shock therapy the doctor came back with bandages and a herbal pad. He twisted my toe and I could hear it crack and it hurt then he bandaged it up with the pad and it was done. Total time spent there probably 40 minutes. After that he gave my mum some medication to ease the bruising and told me to take them after lunch and dinner that day.

Saturday afternoon
well since my dad was working overtime during the day I went to the physio in the afternoon. Pretty much the same procedure occurred.

Sunday morning

Pretty much the same procedure occurred at the physio though we had to wait about 10 minutes. In the afternoon I got to hang out at my uncle's place while my family went shopping. Yes I loathe shopping around for things even though it could be cheaper doing so. I had some meds from the physio so I ate some lunch which my uncle made, bacon and egg roll, it was nice and tasty. I had brought my net book along which proved vital as his laptop had some virus and I needed to load avg from my net book onto an external hdd to use on the laptop. AVG failed to install so I had to resort to formatting the laptop which took longer. In the end I managed to 'fix' he problem. All in all its nice to know I can still do something helpful. Seems like I have been needing help more often now.

As for tomorrow more physio trip as he wanted to try some acupuncture to help with my walking.

Friday, March 18, 2011

spained toe

I have sprained my left big toe last night making it even harder for me to walk.

This is how it happened. I got up to walk up the stairs to my bedroom to sleep I slipped. When I fell forwards I hit my foot against one of the steps it hurt but I wanted to walk the rest of the way, so I did and got to my bed and slept it off hoping that it was nothing.

This morning I woke up and it was bruised up and it hurt when I placed any pressure on it. So it meant i could not stand. I went to a physiotherapist this morning and got it looked at and sort of treated hopefully it'll be better in the next few days.

More later as I don't really want to type more.

Sunday, March 13, 2011


12 march 2011

ok this was the weekend of the fundraising event or magic teams at the card store in the city. It was nice to see the guys again. Overall the day was great. I guess I should start with the night before so I went to bed at 10pm or 11pm which is a tad on the earlier side, but the unfortunate thing was I woke up at 3am and couldn't leep by like 4am I was awake. I went onto my iPhone and facebooked abit to find Seney and Henry awake, tired of using chat I called Henry and we talked. Apparently I was talking a bit too loudly and was made aware several hours later in the morning.

Alright the saturday I had invited Allen to the event and he arrived at my place so we could go the city. We got to about 15 minutes away from my place when paul aka goddard texted me asking if he could go late and train it, Allen was so nice to turn the car around and head to Goddard's house to give him a ride to the store.

When we got to the city I had to call Almerick who was working at the store and let them know we were on our way to the store from the carpark as it took like 30 minutes or so at my pace. It was nice walking to there as we went past UTS on our way to the “Tunnel”.

At the store we sat at a table for the day and our opponents had to come to us as it would be troublesome if I had to walk to a table. I brought along my net book and the business cards I had printed for the blog and wanted to hand them out but it was easier if people just grabbed them.

I should mention that Javed, Norman and Jack won the team event. Congradulations to them they played well and won the day. As for my team we went 1-3 and didn't make the cut to top 4 regardless the team format is great fun as we rarely get to talk to the players of a game as they are playing.

While we waited for the finals to start, I busted out the netbook to do a mtgo draft with John watching and eventually playing. I like the process of drafting more than actually playing the draft out. I lernt a lot from watching John play as he was patient with his spells rather than how I played and used them right away. John made it to the finals where Hash took over and won it just before the battery for the netbook ran out.

We waited as a group of us was going to have dinner aftterwards. Boy was I tired when I finally got home at 11pm I went to brush my teeth and went to bed without even changing.

Obviously I want to thank a lot of the people involved with the event and these are just some of the people in no particular order
Allen – for agreeing to go to the event and for taking me there and back as well as taking the stuff back to the car and overall for looking out for me on the day.
Almerick – Operating the store although you said that you normally work that day it wasn't an ordinary day, Almerick promised to find me the legacy deck and aftter he got like halfway through the storm deck he couldn'rt find Lion's Eye Diamond so I played a deck from Graham instead. Again Almerick was the voice of the auctions and it worked out beautifully
Graham – for helping me track down the novel. Graham has always made me laugh at one pre release event for magic I had a necroskitter and he removed it calling it a 'necrowanker' not sure why but I remember that but thats all I remember about the day of the prerelease. Also he lent me the deck I played on the day which was the bant deck in legacy.
My Team – Hyok and Boney – We tried our hardest and failed the point is never to have tried (Homer Simpson). Only kidding I had a blast playing with you guys and the advice I give whilst it was bad you guys still listened to what I had to say although you guys should not follow it.
Hash – although when I asked you said “maybe” you got to the event and ate dinner with us and even brought along 2 others.
John – For looking out for me i.e. we can't go to havc dinner at X because of the stairs. John also showed me how to draft and explained some things to me. It seems we have a lot in common
Norman – I haven't been too close to Norman in the past though I do talk to him every time I see him . Thanks for everything that you do you are like a guardian. I don't know how to say it but I feel the kindness that radiates.

Everyone tends to make me laugh, maybe i'm just a cheerful person and like to hang around people that tend to make me laugh. So to everyone else thank you for making the event. Sorry I didn't prepare a speech or anything at the fundraiser.

I don't want to type too much as I'm lazy to do 'work' i've put off typing the blog entry all day . So why did I say that John helped me? Today Sunday (13.3.2011) I got into some 8-4s and made 2nd place 3 times in a row today which I think is a huge achievement.

I'm going to order the hard cover of Agents of Artifice aka the Jace novel and would expect it to arrive sometime in the week. Next Saturday I would like my book to be signed by the various guys at good games and I want to draft as well since I have the mbs booster box, also we can play the board game the store gave me. I have decided to play the board games with the other patients at the hospital when I get admitted. I had no idea who I was going to play with and as such didn't want the board games.

Wednesday, March 9, 2011

Another update

9 March 2010

I haven't blogged for a while because I really couldn't be bothered sitting up at my computer for a few hours to type but I woke up early today and didn't feel like doing the usual thing I do and youtube on the iPhone in bed. So what is it that I do all day? I just sit around watching videos on youtube, playing angry birds and carcossonme on the iPhone and playing some magic online. Occasionally I would be on facebook or msn but I tend to think faster than I type and it is more evident nowadays for me so rarely do I want to have lengthy conversations on the netbook.

I know, I keep complaining about the netbook keyboard being too small and the keys being too close together so its hard to type on it properly. I have decided on getting either a sony vaio or a macbook purely based on the keyboard on these laptops. I have thought about getting an external keyboard for the netbook but another keyboard kind of defeats the purpose of a laptop since it won't be as portable.

This saturday is a team event at good games and I am attending it more details are in Eliza's post below:

A long time Magic player Jacky Dang is battling a disease called Adrenoluekodystrophy (ALD). It affect your Neuro Motor Skills. There is no cure but treatment does prolong the patients life span.

Due to on going medical costs the fun raiser will benefit Jacky and his family money wise.
If you can't attend the fundraiser but would still like to help donations can be given in at any Good Games store.A prepaid credit card will be funded with the cash raised so Jacky can use it to pay for medicine etc.

Details of the fundraiser are as follows:
Good Games Sydney: 3 Man team event
$45 per team Legacy/Standard/Extended
11am start
A auction will also take place with cards etc up for grabs.

What else to add? Hmm I have trouble sleeping till the morning now too. In the past few days I have woken up at 5am or so. I want to blog about sunday (6/3/2010) but I don't remember the exact happenings of the day so it won't do it justice. I will try and briefly summarise the day.

The morning was spent with Almerick going to the church again but afterwards we went to the city good games store to do a draft. After that it was dinner time a small group of us went to eat at a “nearby” ramen restaurant. Then we headed our separate ways home. I ended up being rather tired from the walking and the entire day. You could say I was “out of mana” in my pool or not enough stamina. Overall I did enjoy the day out as I got to spend it doing what I enjoyed which was drafting and being able to hang out with the people I knew.

As for tomorrow and the rest of the week until saturday I will most likely be at home as uni has started and most of my friends are busy throughout the week.

Saturday, March 5, 2011

brief day

5 March 2011

Today was spent relatively doing nothing but a lot of pondering.

The first thing I did in my spare time today was read the information book that the doctor gave me about the bone marrow transplant. It really makes it sound like a complex procedure which it probably is, silly me thinking it was minor.

I finally got to see 'the matrix' as I got my sister to buy it for me at the shops. Itunes didn't have the first movie or I would've opted for a digital copy as the netbook doesn't have a dvd drive. I will purchase the 3rd movie too probably tomorrow.

I got to some thinking, am I having trouble sleeping because I am scared of waking up? Every morning I am scared because I tend to get worse every day. Is it the real cause of the problem i've been having with falling asleep? Or is it because I nap during the day so I can't get to sleep at night. Either way this is not a good thing for my health.

Nothing else interesting occurred during my day.

The truth too

4 March 2011

I'm sorry I haven't been feeling too well after my last post. I will blog about yesterday (3/3/2011) however brief it will be.

I was diagnosed at 9 with X linked adrenoluekodystrophy (ALD) at the time I didn't know anything and the doctor told me I would be on hormone replacements for the rest of my life. I remember crying in the meeting when I was told that for the rest of my life I would have to take the medication. It was much later when I was 19 or so when I saw another doctor that said “you were lucky to make it through this age and you didn't know it” I had no idea what she meant and I didn't bother to look it up on the internet.

When I got diagnosed at 9 they did mention “Addison's Disease” and some famous people that had it like John F Kennedy. I had to wear a medical tag which came in the form of a necklace or a bracelet, my mum got me the necklace and it is probably my oldest belonging that I still have. They told me to always wear it so I did do just that except when I go swimming I usually take it off and place it in my wallet or leave it at home. Below is what it looks like

Looks like a regular chines thing huh?

So I could keep it a secret well it was like don't ask don't tell. I was childish at the time and thought that if people knew I would be segregated from the others. At school I was the smallest person and as a result I tended to get over sensitive. I was an academic or I think that way. I was never good at sports always being last picked for a team.

As far as I knew I had adrenal insufficiency because that's what it said on the medi alert necklace. When I got the sytmptoms it was like getting the disease for the first time, I didn't know it was so severe and life threatening. As for now I am accepting of this fate and I would like to say I have no regrets but that isn't true. There are some things that I do regret but I won't change anything as it is the past that determines the present.

So in other news I saw the bone marrow transplant (bmt) experts yesterday and after consulting with other doctors that are experts with this disease they have told me that the bmt will go ahead in about 2 months time. And they even gave me a book on bmt which I will read, the fact is they do like 300 of these surgeries a year so this should be routine for them. The doctor I saw also is part of the team that wrote the book like Henry said he must be really good or he has too much time which could be a bad thing. I hope its the first one. So I have like 2 months to really prepare for the bmt but they did mention that I will be in hospital for like 6 weeks. Although a date is not set yet it is a matter of time now and not a matter of if anymore. My 21st birthday could be spent in the hospital it would've been nice if I could have a bbq at the park or go fishing again or do what I had planned a snow trip for me and some friends my treat of course. When the bmt is done they said results wouldn't show until 1 year after it and I would have to frequent the hospital for checkups.

Apart from the appointment with the doctors I should mention that my uncle took me in his new van which seemed really big and had a chair that was motorised as in it can rotate and lift passengers into the van, next time I will take photos of the van.

I have ordered the business cards and this is what they will look like, I hope they look this good irl

As for tomorrow I don't have any plans. I will answer any questions that you guys want to ask me and I will not get offended. So fire away all questions in the comments I will try and answer on Saturday which is tomorrow.

Tuesday, March 1, 2011

Business cards

1 March 2011

First day of the month and first day of Autumn. So today I had to wake up and get my own breakfast which was easy today just one steamed pork bun I could manage to heat it up in the microwave and bring it out to eat though if I have any soup based things for breakfast in the future I will not attempt it. So today was when I had to go centrelink to get assessed for a disability pension so off we went by car, my Dad drove and my mum accompanied me and she had previously applied for a carer's allowance. So depending on how I go with the assessment she would know the result of her application.

We arrived at like 9.55am with the appointment being for 10am so we need not wait in line and instead waited in the chairs until our name was called. In the meeting it was apparent that I had problems and the interviewer said I should've applied for a pension earlier and that the application should get approved. I didn't think applying earlier would be in my interest as centrelink wouldn't have approved it seeing as I had no symptoms at all.

The entire meeting lasted like 20 minutes and we were out of there I had to call my dad as there was no parking spaces earlier so he just went home. It is ok home is like a 5 minute drive to centrelink he had barely got any rest when I called him to pick us up. That leaves the rest of the day.

When I got home I tried to look for “the matrix” on youtube I couldn't find the actual movie and instead I found an old Jackie Chan movie that was dubbed in English I watched some of it got tired and went to my room to get some sleep. After an hour of napping I somehow ended up with a running nose from tnhe heat. When I woke I was thinking about the blog and if I had business cards I could hand them out to people. For the next few hours I designed some cards and they are up on facebook so check them out if you have me on it. If you don't the cards will look like the blog banner, I will have a picture of the final design in tomorrow's blog.

So after dinner at around 6pm I had planned to go for another walk. I tried to guilt Seney into going with me as she didn't ant to go today by making it sound like I was going alone. My mum wouldn't even allow it, in the end I went with my youngest sister (christina) and my mum. I like the walking frame as it means I hardly stumble with it as it offers overall support rather than just one side, I should buy one before I have to return this one.

As for tomorrow I have a free day so I will probably finalise the business card and placve an order for about 1000 of them.