Rehab

12 July 2011

I got transferred from Westmead Hospital to Braeside Hospital. I will not make another entry until I get out.

Hiatus

I'll be taking a break from blogging until my birthday (15.6.2011). Until then thanks for reading

Edit:I'm taking a break until a week after I get out of hospital

Cheers,
Jacky

The last few days before bmt

8 May 2011

Tomorrow I get admitted to the hospital. I'm terrified of the central line that they will put in my chest. I was told a local anesthetic would be used. Oh how I wanted a general anesthetic. I had a nightmare where I bled a lot after the central line was put in and the doctor told me to suck on the tube and swallow the blood. I woke up from that at 4.30am then went back to sleep. 

Yesterday was awesome. During the day I got to play in the pre release for magic: the gathering. The majority of the games were close. If was great fun. In the evening was a dinner or I should say feast with my relatives and a few close friends. It was nice seeing everyone but I was too tired so I had to sleep at 9.30pm.

Friday was a BBQ at Lo's place and it turned into his early birthday which was awesome. I had a quarter of cup of champagne and it got me tipsy. Sigh* normally it takes 3 shots until I get tipsy oh well. Note to self: avoid any alcohol. When I got home my uncle also told me off for drinking. Even though it was only a bit the effects seem to be great. 

My recent thoughts

5 May 2011

Since today was relatively uninteresting to read about I will write something about my thoughts.

Why do people need a day to be nice to their mums or dads. There's 364 other days in the year to show affection to them. You do not need a day dedicated to them when any day can be special. I don't mean to offend anyone but it's what I think.

I found it hard to accept help from people. Going from being independent to being dependent was really hard for me. I keep looking for ways for people to do things for me as an extra task and not do it on purpose eg. For meals I'll have the extras just needing a bowl and cutlery. 

Another thing that I have found hard is that I need to be more decisive (more selfish) because it seems that it is what i want. 

This illness has taught me to be more patient as it takes a while to do some things on my own. 

A few days

I don't know why but I was feeling unhappy these last few days. But I am feeling more content now. 

So on Monday I went to have a MRI scan of the brain. It's a non-invasive procedure and I had done lots of these. They wanted clearer pictures so I had to have a dye injection. It's fine as I'm used to needles. I would donate blood but I don't think my blood will get accepted. Back to the MRI, it's like being asleep you have to lie still and theres a blanket on you. So I tend to nap despite the loud noises which sounds like road works or construction works. 

Tuesday, I had an appointment at braeside in the morning to see the speech therapist and a dietician. The ST gave me more words and phrases to practice and taught me a pointing technique for reading the phrases. She also told me after bmt I would another ST will take over.
The dietician was next and she wanted to get my weight. Turns out I gained 4.3%  (48-46 = 2, 2/46) in these 2 recent months. After losing about 16% (55-46, 9/46) in the months prior (November - February).  She decided  that I needed some protein shakes and put me on 2 servings of it a day. She also said the shakes are not to replace meals. 

Wednesday, I got up at 8:30am but I stayed in bed as my uncle went to get a parcel at the post office for me. I finally left my bed at around 11.30. I had some food made by my uncle then I took my meds. 

My friends came over and we played 'dominion' before I had to go for dinner in the kitchen. so they decided to leave. At the time Wilson came over to help me with the zapper. You know the parcel, was the zapper. I had some dessert while my uncle insisted he have dinner. The zapper made me want to go release my bowels. Normally well not normally for healthy people but from the time I get the feeling to go and actually going is a few hours. I'm not going to say that the zapper works but it sure was interesting. 

Church again

1 May 2011

Today was Sunday so that meant church for me. Almerick (Almo) took me in the morning. The sunday school was upstairs that led to me being worried but there was a chairlift so I got to use that but Almo went on it first because I was scared since he said he had not seen it being used. In sunday school they voted for the next text, as I wasn't officially part of the church group, I felt I shouldn't vote on the text.

Then it was downstairs for lunch at the church as they provide it. Almo went to get it for me. I had not been to his church for a month, people introduced themselves and talked to me and asked what my impression of the church was. I feel the church has a welcoming feel to it, everyone seems so nice to the newcomers. They (Almo, Gillian, Angela, Gideon etc) had some washing and drying to do as it was the first service of the month there was Communion where Baptised people drink red water (wine) and ate bread like the last supper. After church Almo was going to come over to hang out.

I got home at about 3pm but Almo wanted to finish some work so he would go to Gillian's first and then to my place after dinner. I was pretty tired so I could sleep for a few hours I volunteered sleeping in Almo's car but he wanted to take me home first so thats how I got home at 3pm.

I was tired so I napped and told my uncle to wake me up for dinner.

When he came over we got to some Winston drafting in magic which he won 2-1, damn it, thinking about it I should've taken 1 from his myr rather than let him draw 2 from infiltration lense. Next we got to some mental magic, Almo is far better than me at it so after losing 3-0 I had enough.

this will prob ably be the last time that i can go to church for a year or so. I was told that after the bmt i will have to avoid large gatherings of people to avoid infection (magic joke; if i get 10 poison counters gg). 

Comp

30 April 2011

I woke up at the usual time but wanted to laze in bed. I got the urge to play some starcraft 2(sc2) so i needed the computer. I called my sister and told them to get my desktop ready to move. My family came over with the computer. I opened the tower case up to investigate a noise with the computer. I got too tired from that little task and I had to call some friends to help. Most of them were busy aka useless to me. Wei Qi and Doany were free so they came over to help.

When they got to working, they noticed the inside of the tower was dusty. So with my uncle they vacuumed it clean. My desktop was then put together as in all the cables and the peripherals. The Internet is connected via a long Ethernet cable. I wanted to use a wireless network card but this will do. The desktop was set up in the living room.

This is what the desktop looks like

When it was finally ready I got to play some sc2. I'm so bad at it as I haven't played in a month. Wei Qi had to go home after dinner but Doany got to stick around until later.

Out for most of the day

29 April 2011

I got woken up at 8:15 or so by my parents phone call to get ready but I didn't get dressed to go out until they came over to help me. 

I had an appointment at braeside to see the speech therapist (ST). She assessed some of my talking, getting me to read some words and sentences. The main thing I got from it is I need to talk slower. Since it will be more clear if I pronounce every syllable. 

I was done at about 11. We went to get some food and then it was home for me. A few hours until my friends came over to take me to the movies. 

They helped me get in the car. I don't get motion sick unless I read or do something in the car other than look around or talk and only if I didn't get enough sleep. At the cinemas Henry needed to sort out something with the online purchased tickets while I got to buy popcorn at the candy store. I got to pick our seats as the cinema was pretty empty and they weren't going to enforce assigned seating by our tickets. I could move from the wheelchair to the seat on my own so Henry went to get the others who were hungry and went to the food court. 

I got to watch Fast and Furious 5. I felt the movie was decent it eluded to the other films. What seemed to bother me was that if hanh was rich (I.e. He got 11m from the heist) why does he have to work for the DK in fast 3 and eventually die. Also the prison breakout at the start should killed the prisoners as the bus rolled a few times. Compared to the other films in the series this is worth watching. Next was dinner

We went to eat dinner but the place we had in mind was closed. So we went to another place. Ricky was the one that was hungry though we ordered at the same time his food didn't come when ours did. He ordered congee with thousand year old egg. We joked that they were making the egg and that 999 more years to go. When he asked they said it was coming but when he asked again they were sold out. Overall the meal i had was great and I wouldn't mind going again.

Next it was back to my place. When I got back it was getting late so my uncle made me take a shower. While I took a shower they casually played cards and watched the royal wedding. When I was done I suggested we play some poker but they wanted to watch the wedding. I should mention they are males -.-
It was getting late so they went home. 

A FAQ

FAQ
I didn't think i needed this but I hate typing out the same things. Without anymore distractions, here's some Q and As:

How old were you when you were first diagnosed?
I was 9 years old

How old are you now?
I am now 20 years old. Dob 15.6.1990

What symptoms do you have?
Muscle weakness
Lower limbs being weak
I cannot walk alone more than 2m
Problems with my bladder and bowels - I find it hard to initiate
Speech problems - difficulty pronouncing some words
Mild swallowing issues - I eat slower now to combat this. 

Who do you live with?
I am living with my uncle and grandma as it got dangerous for me at home to go upstairs and downstairs. 

Describe your family. 
I am the eldest child of three ( I have two sisters)
I have a mum and dad
I was born in Australia to my parents who are vietnamese migrants 

What is your nationality?
I grew up learning Cantonese and I know a bit of vietnamese not good enough to speak it. I got schooled in australia so I'm best at english. 

 Wait didn't you say your parents are from Vietnam? 
Yes, but they come from Chinese families.

What is the extent of your education?
I finished year 12
I was in my 3rd year studying B Business/B science in IT at the university of technology, Sydney when all this happened. This would've been my final year  

What do you do in your spare time?
Watch tv
Blog
YouTube 
Play on iPhone 4
Make phone calls
Read
Nap
Use netbook
Music
Facebook

How do you get around?
I use a wheelchair

What do you type on?
My iPhone 4

If there are more specific questions you can comment below or pm me on fb. 

25 April 2011

25 April 2011

I got too tired from the BBQ so I woke up at 11am. I skipped some of my morning routines as I didn't have the time. 

I had bacon and eggs with toast for breakfast. It was a cloudy day and it rained glad it didn't rain on the BBQ day. 

For dinner I had salad and lamb steak. Looks like there will be plenty of meals like this one.

My cousin came over afterwards and we got to talk abit. I webcammed with my cousin, Emily who showed me her baby sister and I got my cousin who was over to chat/see her. We watched some tv then it was time for them to leave. 

BBQ Sunday

The BBQ 

A huge thanks to my mum for buying everything for the BBQ.
A huger thanks to uncle hai for bringing the grill, marinating the meats and cooking.
A very huge thanks to my uncle Keanu for letting me host a BBQ, setting up the seating and food, and for cleaning up. 
Lastly, thanks all for coming

One of my fears from the BBQ came true, I would have food leftover for the next week. Everyone went for the sausages so there's none left. 

I had nothing to be scared of. I found  out later that uncle Keanu already went to the neighbors and told them we were having a BBQ and could be loud. 

Sorry most people had to leave at 10pm. It was getting late and I needed to sleep. I would've invited more people but it was getting crowded

Brief update

24 April 2011

I write this at 5am. I can't fall asleep again after waking up at 3am. This sucks so much. My uncle and my mum says its because I think too much. My uncle thinks I should meditate to clear my mind. I have been learning it by focusing on my breathing while closing my eyes it sucks that I get sleepy when I do it during the day and can't sleep at night. 

Now I'm typing the blog at 11am. I managed to sleep again at like 6am and woke up at like 9am finding spare time now. I think I'll voice record the blog and get my sister to transcribe it this would mean that I can't do entries late at night because apparently I'm loud. 

I get to host a BBQ at home today for some relos and friends. 

Small excursion

19 April 2011

Rather than start off with a review of the day I'll share something. I go into hospital on the 10th of May I wasn't too afraid but after the information session I am now scared. When doing something for myself or entering an environment I am fine with it being 'khu ki' or whatever. When asked about food I am fine with anything so I just say 'si dan' which means anything. 

So I woke up at 8.30am skipped blogging and the morning exercises. I felt tired and sleepy the entire day because it took me 1-2 hours to sleep and I had broken sleep waking up at 3 and 6.

 I went shopping after lunch time. I bought some more snacks. It was different to my usual mentality of: get in, buy what you need, get out. I didnt have an objective to go to shop. Still drowsy I got a coffee chillier it was nice but i vomited about 30mins later because i felt dizzy getting pushed along in the wheelchair.  

Sad saturday

16 & 17 April 2011

On the Saturday I was meant to go to the dinner event. I had changed my clothes and had organized a way back home for the night.v Then as I was about to leave it started to rain. I changed back and was upset so i stayed in bed. Now I should explain that I can't afford to get sick as I have to be healthy for the bone marrow transplant (bmt) since being sick will mean that they can't go ahead with it. I didn't do much that night I had called and asked my friends to come over after dinner. But they finished at like 9.30pm, it was getting late and I needed to sleep not to mention the neighbors complained about noise and my uncle and this place got a letter from management to keep the noise down. This is so lame as we tried to be quite anyway eg only ever having the tv turned to a audible volume, whispering at night and etc
They should've just confronted the people being loud but no, instead they went to management. 
So Saturday was pretty much uneventful as I couldn't go anywhere because of the rain. 

Sunday I was meant to go out to cube draft but it was a cloudy day and I was feeling tired so I had to call it off and instead they had to come over later in the day. This is my schedule for an ordinary day

6am wake up
6:10 do my leg exercises
7:30 blog/play on iPhone 
8:30 ask uncle to have breakfast made while it's made i brush my teeth
8:40 eat breakfast
9:10 do anything 
12:00 ask uncle to have lunch made
12:15 have lunch
13:00 do anything, usually tv
17:00 eat dinner
18:00 do anything, again it's usually tv
22:00 shower with help from my uncle
22:30 brush my teeth 
22:40 sleep

Of course there's bathroom time when I need to go. I snack in between meals sometimes too full for lunch. 

Info day

14  & 15 April 2011

The 14th was information day at westmead hospital. The folks came over at 9am to get me ready to go. I was tired that morning and had napped on the sofa after breakfast. 

The info session was very informative for me. The presentation was much like a uni lecture. I'm scared of the procedure to put a central line in my chest. 

When the info session was over we went to parramatta Westfields where I went to JB and browsed their DVDs to end up just leaving. Next I wanted to look for a novel but we couldn't find it in Westfields so I had to ask my dad to wheel me outside to another store. They had it, the tezzeret book which I wanted to give to Guisseppe as a going away present. He is going to migrate to France. 

My family and I had some Laos food Then I had to go home to sleep. I was so tired from the day. Which brings us to today. 

This morning I woke up at 7am and then I spent some time doing my leg exercises until breakfast. For breakfast I just had the usual, corn flakes and soy milk with jam. Im slightly lactose intolerant in that I can have 1-2 glasses of milk. while I can eat cheeses.

I spent my morning organising people to visit me today/tonight. I wrapped the present up it is hard work to get it looking good so I just did a rough job. No wonder places offer free wrapping during Christmas it is such a chore. 

At lunch time Guisseppe is coming over for a visit. If I could only go out by myself I would meet him for lunch. 
I type this now as I have some spare time.  Guiseppe played some magic and talked for a bit. 

Tonight after dinner we will be doing a team draft. 

New place :)

12 April 2011

Sorry that I couldn't post updates because I didn't want to use my mobile net to do so. This post will include lots of photos instead waiting for the wifi.

I am feeling very happy now that I have a change of environment and it is far safer for me to move around on my own though my uncle Keanu insists that he supervise me in case I do fall. He said I had gotten stronger in my legs so hopefully it's true as I begin my daily exercises.

My friends can come over to visit me which is nice but they are typically free only towards the end of the week.
My friend Wilson gave me some stuff to read. So many things I want to read but I am a slow reader so it will take me some time.

So many things to re blog but I don't have the stamina or the time to type it all up. I have typed up the answers to an interview that Anna had to do for uni. So with her permission I will upload the assignment later on in the week.

I went outside to the front to get some morning sunlight. I enjoyed the warmth and my pale colored skin can darken.  I think I will do this every morning as I feel much better afterwards.

I want to upload photos of my dinner but fb doesn't let me upload them and I hate using my net book as I first need to connect my phone, find the file and then browse for it through fb. I just cbf doing it. So apart from today I don't want to show pics of my dinner unless the fb app works.

As promised here are some photos.
Apart from the front it looks so much better in the morning.
How I get around now

Where I sleep

The lounge room

 
My uncle Keanu and the kitchen

Random things that happened in the last few days

• For dinner or more so lunch I had kfc over the weekends
• Friends visited me and we played poker
• Friends visited and we played dominion
• My relatives came over
• My uncle Eric and his family came from interstate
• I asked the speech therapist for exercises
• I got some leg exercises from the physiotherapist

The move

7 April 2011

I woke up at 7.30am and felt good so that's a start. I have noticed i like routines and schedules as they are planned events, I can prepare for. 

I will write my blogs when I wake up in the morning as I have the time. Though I am limited to just typing while there is no wifi to upload pics. 

The new place is so nice I'll have photos in a few days when everything is unpacked. Thanks Lo for helping set up my bed and for taking me around the block. 

Moving, slowly

6 April 2011

Nothing really eventful. I woke up at 8am despite arriving home late but I was tired so I went back to sleep, it takes me some time to fall asleep yet I tend to be a light sleeper so I get woken up at times. I woke again at 11 ish time to get up. 

I had some bacon and eggs with toast for 'breakfast'. Then i sat down and did some blogging to catch up on the past days. My mum came over to keep watch over me. While my uncle moved some unneeded things to the new place. 

I have not seen the new place yet but am excited about it. It's not far from my current home so not too far from my family. I will take some pictures of it but will be without the net for a few days. 

At night after a shower I played words with friends over the net with my sisters. I lost as I kept 'q' and 'u' tiles in my hand. 

I slept after the game as I got sleepy. 

Tuesday gathering

5 April 2011

It was yesterday so I should remember it. The morning was like any other. At around lunch my mum came over to look after me while my uncle had to take granny to sign a new lease. It was for a few hours till it was time for me to leave for a gathering. I ate before we left the house as my uncle had to drive me there.

It was to play some magic for a few hours. People were late to arrive so we (Ronny, Neil and I) played a game of 'dominion'. The social gathering was among magic players that were known to Tony (who I met at the fundraiser auction).
Ronny who I had met a few years back when I started magic helped me get in the house from the car and from the door to the play area.
There I met some other people and to my surprise and delight a friend from uni who turned out to be Tony's workmate. In the end I came near last. Tony ended up winning the cake he bought for the winner of the event. It was time to leave and Tony ended up driving me home. Thank you Rony For helping me. A big thanks to Tony for taking me home. Thanks to Neil for hosting the gathering.

When I got home I was exhausted and went to sleep as I got into bed.

Monday rehab

4 April 2011

It's Monday again. This day I had an appointment at Braeside hospital for rehabilitation. I thought it was like the other times (i.e 9.30) but it was earlier this time at 9:00.

At the appointment the speech specialist was absent as she was sick (I hope she gets well). So i met with the physiotherapist and the occupational Therapist. With their assessment of my wheelchair they decided that it was too big for me and decided to find one that was right for me. So I got loaned one to see if its the right one. they also wanted to see my daily bed routines and suggested ways to improve it.
This is how I get around the house:

not the safest but temporarily its decent.

The next appointment is on next Monday so hopefully they can help improve my life now.

3 April 2011

It was Sunday but I didn't want to get up early for church as I was pretty tired from the day before. 

Almerick, Goddard and his friend Michael came over and we played some dominion which I won by a single point twice (which was lucky that the game ended as another turn would mean lose).  thanks guys for coming over. 

Thanks Scott's wife for the gift. I have started reading it. Scott you have to go to my dinner and bring your wife. You too Norman

I'm looking forward to the dinner event as I will get to see almost everyone :)

Exhausting day

2 April 2011

A tiring day was had by me. It was Belinda's 21st BBQ at a park. Wilson came over in the morning before we left for Bel's. Lo and Seney came by as well to chat a bit before it was time to leave.

The BBQ was awesome fun too bad we had to leave early to go to a dinner. Her cake looked awesome and it was tasty too. I didn't want to get too full as we had a dinner. 

We (wilson,Lo, catherina, Seney and I) needed go to jacqueline's house for a housewarming where she cooked us dinner. She lives like an hour drive away though I was asleep for most of the trip there and back.
The stew she cooked was so nice tasting to me, it was juicy and tender. After the dinner we played a gory game on the xbox called 'limbo'

As for sunday I am going to write the blog later on. 

April fools day

1 April 2011

Since yesterday was uneventful i will instead blog about today. Today is Friday Friday and tomorrow is Saturday :)

My folks came over this morning. After they left I went to nap again as i was tired and felt a little unwell.

Meals seem to taste good here though the portions leave me feeling over full. I don't like the feeling so I usually try and eat till 90%. This was dinner:

it was a seafood stir fried noodles. In the future i'll upload on faebook so friend me if you want to see them.

Wilson came over for a visit. It's nice talking to him. When he left i went to shower.

 My uncle has a wheeled bath chair and he brought it to my room. I would have to sit on it and get pushed to the shower. In the shower I now use a hose thing to actually put water on myself, I'll provide pics tomorrow.

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...http://www.youtube.com/watch?v=ji5_MqicxSo and http://www.youtube.com/watch?v=H8ZuKF3dxCY&feature=related
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.

Emergency

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. 

Moving

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.

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.

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

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

Mondays

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.

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.

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.

funddraiser

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 2^nd 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.

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.

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 3^rd 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 21^st 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.

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.

Rehabilition

28 February 2011

The last day of the month. Today I went to Braeside hospital to do so,e rehabilitation. The appointment was at 12.30 I had to leave for it at about 12pm so I didn't eat lunch nor was I hungry since I had some breakfast before my medicines. I have chosen not to take the anti depressant meds as I had gone swimming but because of the minor scratch or patch on my leg it stings when I get water on it. I will have to take them tonight.

I arrived at the day hospital and directed to the waiting area where I met the organising doctor or the co coordinator for the day. We then went to another room where she asked some preliminary questions to better understand the situation.We then went back to the waiting area for the first doctor who would be the speech therapist. She came and got the medical records and me of course and we walked to another room.

The speech therapist was really nice actually they all were. Firstly some initial check up showed her that I had trouble pronouncing some words. She explained why I shouldn't have hard foods like peanuts and the like and suggested I avoid those foods as it could be dangerous for me if I were to choke on some foods and food ended up in my lungs. The other thing she said was that I should put less in my mouth when I eat and drink a lot slower to avoid any problems wjith the choking. After this we were back to the waiting area for the next doctor the physiotherapist. She came in and we were off to the centre's gym.

The physiotherapist brought us to the gym at the centre where It had lots of the equipment that the place had and the room was quiet spacious. The initial inspection was some exercises to determine the degree of my lack of co ordination. The “test” had a total of 56 points and through all the exercises I managed a score of 40. We had originally been in one area of the gym but we moved to the walking bars to do some of the test as it was dangerous if I had to do them where we were. Then she went to get the walking aides. There were two things that I wanted to try, crutches and a walking frame. I didn't like the walking stick as it often just gave me support on one side and I would need help on the other side. The crutches seemed to be a problem as I would mistime my legs and it as well as the want to move quicker. Then I tried the walking frame, it seemed to offer me the right mix of support and it gave me freedom to move at my speed so it was the perfect thing. Next the occupational therapist came in because we were running a bit late and got us for the other room where she worked.

The occupational therapist was in charge of the daily activities and handled a lot of the daily tasks that I had to do. She wanted to see how I got into bed and out of it, showering, toilet, brushing etc. We then went back to the gym where she asked me to demonstrate how I would go up and down the stairs as there was a staircase in the corner of the gym. The next step was going to another area of the gym and she explained some things I should do around the house rather than just give me some exercises that I had to do. There were two things that I will do and I have done one of them already:

1. dishes after dinner or even go for a walk
2. making/getting my own breakfast

yes these are things that I should do on my own anyway but my parents were too nice to me in the past and as I was growing up.

Anyway tomorrow I have to go to centrelink in the morning as I am ineligible for a study allowance anymore and I have to go in person for an assessment to see if I can get some sort of medical pension or something. I wanted to type more about today but I didn't want the blog entry to be really long so I kept it to mainly just the rehab I did today from 12.30pm-3.30pm. Another thing is they let me borrow the walking frame and encouraged to use it, i would return it at the next appointment.

church again

27 February 2011

there was nothing planned for Saturday so I stayed at home. I tried to play some DotA on sat, but failed somewhat miserably, I kept losing control of my hero and struggled to scroll on the screen correctly and mistiming of spells on the hero so sad that I had to work out the game wasn't for me.

Another thing I did was play some pokerstars and because I got impatient going all in on A 10 suited I lost the last remaining funds in the account so that's that, no more poker. In the end Saturday proved to me that I can't play dota or poker and thus I should just quit them.

I forgot to mention the button thing when I had dinner on friday so heres an exert as told by Seney:

noticed one of Henry’s shirt buttons undone and everyone actually noticed it too. Almerick wasn’t too sure if it was on purpose so he didn’t say anything. As dinner progressed, the unbuttoning process continued to two buttons undone. Okay… at this rate I looked at Almerick and he was laughing and then I lost it and laughed too. Then Gillian was also laughing. I was doing so well at keeping a straight face earlier! (Apart from smiling at my food a few times). Jess told Henry about it and while he was buttoning up, Anna kept trying to undo them again saying “it looks nice!”.  LOL

On sunday Alermick took me to church however we didn't arrive in time for the sermon or morning service, not to worry as I would've gotten bored or yawned during it. I slept at about 2am on saturday nightr and got woken up because I heard my ringtone on my iPhone in my dream and then I woke up to check on it in real life, sigh* what was I thinking? Who would call at that time anyway (please don't c all me to prove me wrong) . I looked at the phone time it was 3.15am I think it took until 4am for me to get to sleep again. Anyway we arrived in time for the Sunday school but it wasn't to start for 30 minutes so I got to playing some mtg with Robert (aka the jund kid) When we had class I went with Almerick to his class and Robert was in the same one too. Almerick toold mew tthat after church we would go to Gillian's place and play saome borad games and watcch Toy Story 3. I haven't seen it yet. After they did the class work we had 30 minues or so until lunch s what did we do? We played more magic. Then we went for lunch downstairs in the chruch, there Almerick got the lunch and while we were eating he invited Angela aswell to go and hang out at Gillian's to watch Toy Story 3. After lunch we headed upstairs again to play some more magic and I made a deal with Robert about what we were playing for. We only managed 2 games but he won them so as agreed I would donate some money to the church its ok I was going to do it anyway.

We then left for Gillian's place. Almerick suggested I call Seney and ask her if she would like to come, She was at Burwood at the time and Almerick said we can pick her up later from the nearby train station to Gillian's place. We played some more magic while we waited for Seney at Gillian's place while Gillian took a nap. After we got Seney we played some carcossonme with the 4 of us this tine. I ended up winning-by 1 point, yay for me, though if I had lost by 1 point I would've been mad since I did forgo getting 4 points for a road or something earlier in the game. Angela came soon after and then Almerick had to go across the road to rent Toy Story 3. We ended up watching it upstairs as Gillian's parents were hosting people from the church and it would get noisy downstairs. We watched the movie but midway through we got called for dinner so we had to put the movie on pause while we went to eat.

*spoiler alert* I really thought the toys were going to get incinerated at the rubbish tup. The ending got me abit teary eyed when Andy talked about Woody as he was giving it away. If I were to rate the movie it would be an instant 5/5 definitely worth watching.

Almerick drove Seney and I home as it was getting late and he had an early start for university. Dear me uni starts tomorrow though I did defer the semester so its quiet ok for me to sleep whenever as I could easily nap it off. Like my other post I have made up my mind that I will defer this semester and most likely withdraw from the degree next semester.

As for tomorrow, (Monday 28.2.2011) I will go to Braeside hospital to do some rehabilitation with “the team” of doctors. My condition is probably worse now today every time that i wanted to walk unaided by Almerick i said "i got this" and next thing you know i would stumble *sigh

A taste of shanghai

25 February 2011

Alright I had a feeling that the lunch BBQ would not be going ahead tomorrow (26.2.2011) due to not enough people showing an interest in it. So I called Henry and asked if he wanted to go to dinner tonight instead.i felt like eating dumplings and 'a taste of shanghai' was a good place and i had been there before.

Until around 5pm I napped, played some casual mtgo games, youtubed, faebooked and maned abit. I was on my computer upstairs when I got up to go downstairs I stumbled a bit in my room and fell to the ground, thankful.ly I didn't bleed or break anything maybe my spirits but as for my body I was fine. I got up again right after so it was nothing major.

Dinner was awesome, the place was good and we had lots of laughs. When we, the 10 of us, got to the restaurant we had to go upstairs to have a table for 10 which was fine , it surprised me that there was an upstairs to the place. We placed our order with the waitress and she then read our orders back to us, it seemed rather long, when she was done we looked at the receipt and I was “just” 13 dishes During the dinner some people made comments about how they zoomed in on the plates in the menu because the dishes that came were smaller than we thought compared to when we ordered it from the menu. Next came dessert which was rather nice normally i'm too full from the dinner to eat dessert too so we again had to get the menu. I knew what to get since I tried it the other time and it was so nice to me. We ended up with 3 x red herbal jelly, a bubble tea, a ;passion fruit tea and another dessert which I forgot the name of. It was a ka chang or something. They agreed the desserts were larger than picutred but regardless the dessert that I ordered (red herbal jelly) was nice or so they told me. After dinner we had to get the bill and it was way less than I had imagined for the 10 of us with desserts too, they didn't want me to treat them to the dinner and each person was willing to pay their share. When we left the place I was walking down the sitars using the rails to help me get my balance. Seney walked ahead of me so if I did fall she could help me brace the fall, I don't think it was a good idea for her to cushion me if I did slip. Almerick stepped in front incase I did fall instead of Seney, he made the joke that if I fell on him he would then fall on Seney. This was bad since I was laughing while on the stairs. Don't worry I will not let myself move and laugh.

After we left the place some people needed to use the bathroom so a few of the people went to the bathrooms in the mall while Ricky had to go to his car to get the parking permit and Henry went to get his car to move it around so I wouldn't have to walk so far.

When we were done Lo Tech wanted to go out for drinks so I got let off at a friends place instead of at home. He was heading off tomorrow back to Orange where he studies so he didn't go the the dinner rather he would have dinner at home with his family. Sadly, Henry and Anna couldn't join us as they had to get to work tomorrow morning/ Anyway we went to a localish place and the 5 of us, went to a pub (me, Seney, Lo Tech, Wei Qi and An). At the pub we had some drinks (non alcoholic for me of course) and some wedges and we talked a bit. It was awesome too getting to hang out with them.

So overall the night for me was pretty awesome.

The next thing for me is to meet the team and do some rehabilitation exercises ar Braeside on Monday (28.2.2011) so hopefully they can help teach me some skills for everyday living.

farewell dinner

24 February 2011

I'm writing this today as I was worn out after the dinner and I just went home and went to bed. For those that are new to the blog I think you should read the first post “the truth”. I had no idea these blog entries were so long as I type them in open office writer and then copy + paste it. Last night I went to the blog on my iPhone to find the post as a friend didn't know about me (I haven't seen him in years) and rather than tell him I thought it better if he read it.

Lo Tech planned a dinner this was his farewell dinner before he had to head to Orange for his university as it was starting up again next week. Dinner last night was a good experience, I got to talk to some people about various things. Dinner itself was good, I got a T-bone steak but I needed Seney to help me cut it off the bone as I couldn't do it myself. I dropped the knife while I attempted it earlier so I asked her to cut it off the bone for me although she asked if she needed to cut it up I insisted that I can do it myself as long as it was off the bone, maybe next time I should order a steak without a bone.

I have deferred university for the next semester and I will most likely withdraw from the degree as I will not be able to the exams. Yes I know i'll probably need a scribe for it but I don't like dictating and I like to write on my own. If they let me type it up I don't think I can type as fast as I write.

The next step is another consultation with the cancer centre (they will be responsible for the surgery). I have decided to do what they recommend so based on the last meeting with them its either to do the bone marrow transplant or not to do it. I originally thought the procedure was simple but after the doctors explained it the procedure seemed more complex. The surgery carries a risk which the doctors had to reveal. If anything goes wrong they don't want to be liable for not telling me the risks.

As for tomorrow (26.2.2011) there is a BBQ at a park planned but it might not go ahead since there's not enough people.Either way I want to go to another dinner tomorrow night if at all possible.

RTA

23 February 2011

I wanted to update my blog each day but apparently my life is boring when I stay at home. So i'll update it when I go out typically towards the end of the week.

I'm glad that this disease decided to show symptoms as I'm an adult and my friends are too. I would not be able to do some of the things if this was 5 years ago and I wouldn't have met some people. If I was younger I would not be able to blog and I would have to rely on my parents to drive me around. So I am grateful that my younger self was unaffected by the symptoms now.

Earlier today I went to the RTA good thing Lo Tech could take me. My condition has probably gotten worse, I'm often getting tired from walking short distances. I had to go to the RTA to get a disability parking permit and my proof of age card. The ability parking permit is called a mobility parking scheme (MPS) and comprises of two things, a card and the holder. I wanted additional holders for the cars that would drive me but the attendant said they were only allowed one per card. Which means I’ll need to bring the holder each time. The 2^nd part of the MPS is a card much like a license which needs to be placed in the holder. I needed a form of ID so a proof of age or NSW photo ID was something else that I needed from the RTA. In the end the MPS cost $35 and the ID cost $25 and they would expire at the same time in 5 years. Lo Tech helps me out a lot I’m sure it would be this way had I not gotten the symptoms though if I hadn't then there would be no real need to go to the RTA.

Tomorrow (thursday 24.2.2010) is a planned dinner thing and drinks later I guess no alcohol for me.

the weekends

February 19 & 20 2011

sorry I got tired last night and a bit lazy so there wasn't a blog post.

Saturday

On Saturday 19, February 2011 I went swimming despite not wanting to go for the past few days. I found it quite good and it was quite the workout for me (yes I'm terribly unfit). It was a shallow pool being about 1m in the shallow end and 1.4m in the deep end so I could easily just stand up in the water and keep my head above the water. I did 4 laps of the pool which wasn't that big about 25m in length or 20m I'm not sure, when I did the 4 laps I didn't use my legs at all so I breastroked only then I got tired so I walked the pool. So awesome to walk it without needing any assistance, I did stumble but being in water meant I didn't fall down. Then came the dreaded part of swimming, going to the change rooms, thank fully there was a disabled cubicle in the male change rooms so I went in there after telling my dad to put the toilet seat down so I could sit and put on my pants later on I'll leave the details of the exact changing out but it wasn't as big of a hassle as I had imagined or remembered it beimg. So when my mum suggested I go 4-5 times a week for 30 minutes a session I said “how about I go once for like 4 hours”.

So I went swimming in the afternoon and in the evening till night I went to Eliza's to play some board games. I didn't know how to play 'dominion' but I learnt the game later on and it was quite fun as I got familiar with the goal of the game, to get the most points and how the game ended Part of the fun was winning it but by a narrow margin of 1 point, oh man so glad I bought 6 points rather than the last card to end the game. Then we played a horse racing game which was also fun though I didn't even get close to the winner I had like $70 when he had $300 or so. It was getting late so Eliza drove me home.

I had borrowed some cards to make the standard deck I would be playing at club ashfield, this took me until about 2am as I didn't previously sort my cards.

Sunday

I woke up at 7.30am despite setting my alarm for 8am, its just 30 minutes earlier this seems to happen a lot when I do want to go somewhere, I tend to wake up earlier than the time I set my alarm to. Compare this to uni, I am much more eager for this. So the standard event doesn't start until 1pm or after the lunch break. I got there at 10am when the extended PTQ was starting and Victor was going to be late for it but it didn't bother him, I wanted him to go on ahead when we got some parking but he didn' really care about the potential game loss and instead walked me to the venue. I had brought a notebook bag along which had my netbook and the deck I was going to play in the standard event. I played some magic online using my iPhone's tethering of the Internet to access it, I was going to play 1-2 drafts but the first draft the opponent was such a bad sport I attacked him for 8 damage, he was down ti 2 life, I used a triskelion counter to ping him and then he used re assembling skeletons trigger and gave priority to me, I was lagging so I couldn't do F2 in time to say “ok” and timed out in the round. Such a bad sport I was going to win and then he intentionally did that.

Many people that I knew asked me what was wrong but I didn't really explain it to them as that's why I started the blog. Getting tired of having to tell people and explaining the same things over and over again.

The standard event was 4 rounds and i'll try to do an event coverage

round 1- loss – this was against mono red. Where his deck was all in and dedicated to killing you in the first few turns

round 2 – win -mono green elves this was a tough game but a genesis wave that got mana leaked in game 1 was awesome as it turned out since I sided them out in the following games

round 3 – win – rug control – boy this was tough as I was relatively unfamiliar with a mirror match on mtgo but land screw didn't help him out at all and I won it from there.

round 4 – win – u/w polymorph – this was an interesting matchup and it was enjoyable, I don't know about for my opp but I had fun in this match. I won game 1 convincingly but lost in the 2^nd game to a mass polymorph, I didn't need to see what he would morph into as I knew anything could've killed me\. Game 3 he got a mass polymorph off. The pervious turn I had seen a terrastodon at the top of his lirbrary and I left it there for him to draw,. He was on 3 life and I had an infero titan in play. sure enough he draw it then cast a mass polymorph, thankfully I had jace, tms in play when he resolved emrakul, iona and archon of redemption. He gained 24 life in that turn I drew for my turn it was a bolt. So I bounced the emrakul with the jace I had, dealt one damage to each of his 2 creatures and 1 to him when inferno titan attacked, he blcoked with iona and I bolted the archon. This was a go0od turn for me as I neutralised the threats.

so I ended up being 3-1 in the event and overall fnishing 3/9 behind first and second who had an intentional draw to finish in the top 2 spots. Had they played it out I could've got 2^nd place. Oh well I had fun today.

For dinner I went to a dumpling restraint with Prads and Hyok in Ashfield the plce was called 'a taste of shanghai'. We had 6 dishes of dumplings and a serviong each of desserts. The dumplings there were tasty at one point I wanted to order 3x as much as we had but that changed after I had the dessert what we ordered was the right amount of food. The dinner was great I had an awesome time with you guys.

So after the dinner Hyok drove me home and dropped off Prads by his car. Durikng the car ride an important conversation of magic occurred. I gathered some more information and got to express my opinion. I only play magic for the social aspect of it. I enjoy hanging out and conversing with people more than actually being any good at the game itself. Thats why people asked me about my condition when they saw me stumbling and holding the walking stick.

When I got home. I began to write the blog entries whilst playing some poker, I won $9 so that brings the total to -$143 from what I had. Henry texted a group of people and said he wanted some ice cream or something, it was ok I had just gotten home so I decided it was fine to go out again since I wanted to hang out with him, jess and sam. I later found out that Seney was going so it was fine I called her and got a confirmation. This was awesome they wanted to go eat some congee. At Superdish (the nearest restaurant) they were closing so they didn;t allow more people in. The chili fish balls seemed to catch my eye so Henry asked if we could buy them and take it away. The fish balls were spicy, we ate them in the carpark. Then so fail woollies closes at 10pm and we wanted a drink damn it the time was 10.09pm. We then went to 7/11 and got Slurpees on the way to Sam's house to drop him off again. Thanks for taking me out for the night, no sarcasm at all. Even though it was for a bit I think I had as much fun as friday when we went to the pho dinner. I remembered this more because it just happened.

Well guys that was my weekend tomorrow well next week I will get my ID and do a few other things like go swimming again. Though they haven't set the time I look forward to next weekend and the BBQ outing that's being planned.

dinner

18 February 2012

I won't talk much about today, I had said that I would go swimming but I'll do it tomorrow afternoon. I hate going swimming the changing after wards is a pain as well as getting out of the pool and gathering your things and going to the change rooms.

So I played more online poker, so annoyed I was up like $30 but then I made a loss of $160 so overall I'm making a loss. I guess I'm not good at this game at all =/. at this rate I won't be able to play much next week since I said I would not despo10 sit anything further. As for playing some mtgo I did a draft today and misbuilt the deck, oh dear I see a pattern here. I'm no good at these games, give it a week and I'll probably be sick of losing in them.

I had a diner gathering at Pho An it was at Bankstown guess what I ordered. Pho ! Who would have guessed that from the restaurant name. Anyway after the dinner we had some conversations and it led to Allen saying something that I had found really funny it almost brought me to tears from laughter it was about the Pokemon centre in Japan and then he said “bring a dead rat there and get nurse joy to revive it and say 'help it fainted'”. We then moved outside of the place to discuss  what to do next and I stumbled and fell down. It didn't hurt or anything and it didn't bruise me at all. How did I stumble? I'm trying to figure it out but it doesn't matter as it was no big deal.

As for Saturday, I will have to go swimming as I have been trying to avoid going to it. Also Eliza is taking me to play some board games with them. I could practice magic with Kenny as the PTQ is on the Sunday

poker?

!7 February 2011

Today I woke up at 9 despite sleeping at 4am I was determined not to nap at all.

Most of the day was spent playing magic online drafts which take 2-3 hrs each as I seem to always make the 2^ND round only to lose it in an 8-4 draft. I want to be doing recorded drafts and games and will have much more detailed reports, let me know in the comments if this would interest you. I wanted to do the videos when I didn't know about the illness that I had so about 1 or 2 years ago when I started playing some mtg.

Now I don't want to seem ungrateful or greedy but I had used about 10% probably less on playing some online poker. Don't get me wrong gambling is bad. OK this what I'm planning to do, regardless this is the only amount I will ever spend on it. I treated it as buying a game. I am unable to really play any video games now at all as I am a likability to the team and it angers me when I make obvious errors when I play. Also I don't enjoy losing so I would refuse to play something I'm not good at. Back to the poker thing, I'm sorry if you feel betrayed in a way. I can't possibly find a job and start earning some money so this is my chance at it. The other thing is that without playing video games I did not have anything outside of magic online. Today I had lost $90 but I won $110 so there's start I net gained $20 terrible for a days work but it was fun and I don't intend to get suckered into it. I repeat myself that this is a one time deposit and I would not do it again, ever.

Why do I mention this when I could easily just not write about it, I feel you guys have the right to know where the generous donation is going.

Tomorrow I will go to the swimming pool to exercise as the doctor recommended which means that I will not have to take the anti depressants, yay!

I'm depressed?

16 February 2010

I didn't get a chance to look at my emails until this morning. Thanks Almerick and Henry for organising and collecting it. I'm possibly the hardest person to shop for because I tend to get everything that I need. When Seney wanted to get me a birthday present which was a wallet. She made me go into the store to have a look and I ended up buying it as I saw through her plan, instead she had to think long and hard for a new gift which was a calender that she made. I'm not sure what I'll do with it but I guess donating it to another charity is probably a bad idea as you guys would've done it yourselves. I like the numbers, it means something I guess which was priceless in a way, yes I know the amount is equivalent to the numbers. However what I'm trying to say is that it was thoughtful and meaningful.

I have a hard time explaining things and when I say something I think is funny I often laugh as I tell it. I'm thinking faster than I'm talking. Typing is the same thing, I think about things faster than I type them. So bear with me through it all. Haha bear. I typed 'bare' to Seney which she told me it was 'bear' so that is something that I won't forget.

Alright, so I started watching 1LOT again (I'm finished with ep 2) and an initial symptom for her was severe weight loss this also happened to me I went from like 55kg to 46kg which is a 20% drop off. I would've seen this and it would've alerted me to it before the unsteady walking developed.

Yesterday (15.2.2011) I went to the doctors like I mentioned in the previous post. However I didn't mention that he prescribed me with an anti-depressant. Now do I really need it? He also suggested I go and do some water based exercises to improve my outlook on the future. Its hard to be like before when I can't do the things I could. Showering scares me I take the shower then put on my underpants then dry off and go to my room to sit down and get dressed because I'm scared of falling. I'm not allowed to go out alone anymore.

How do I think positively? That is something I want to show others because I have accepted my fate.

I get emotional too easily, shedding tears when things often overwhelm me with emotions. Is this an inherent weakness? If you have met me I'm sure you think that I wear my heart on my sleeve. Go on close your eyes and think of how you would describe me.

Just now my i{Phone decided to not respond, I just locked it and it will not unlock and it was on at the time. So i'm not sure what to make of it.

Items can be replaced with newer items that are often better than the old. So it doesn't really bother me too much that the iPhone decided to not work. What bothers me is the fact I could miss calls and sms'.