Tuesday, February 1, 2011

The truth

Hi friendi've decided to start the blog as i'm tired of telling people in person or individually the whole facebook thing doesn't work as it keeps refreshing and the actual note gets pushed down the news feed thing. I'll treat everyone as if they are hearing what I have to say for the first time Ok where to start, I guess the beginning will do
I was very unwell from the age of 6 where I would be hospitalised during the winter when I had the flu, this trend continued every year, winter would come I would get sick with vomitting and diarhhea so I couldn't actually get any nutrients the only thing was a saline drip. The third time I was hospitalised, when I was 9, rhey (the doctors) send me for a test and eventually diagnosed me with X-linked adrenoleukodystrophy meaning that it was inherited in the X chromosone. At the time it meant that I had to take a hormone replacements known as hydocortisone and a little bit of flurocortisone. Now these came in tablet form and I had not taken any tablets befpre nor did I know how to, for the next week or so they tried to crush the tablets into a powdered form and then introduce it to some food or drink, I just remember the bitter taste that it made things like orange juicel. In the end I learnt to take the tablets uncrushed with a teaspoon of honey which only lasted a week after that as I had learnt how to take tablets normally with the aide of the honey.
Fast forward a few years things were the same throughtout my teen life just that I knew I could never get the “have not been absent” from school as I had to go for MRI scans twice a year, followed by checkups with the neurologist 3 checkups with the endochronoligist and 2-3 checkups with the geneologist. I'm sure I got it wromg but I didn't think about the appointments instead just going to them when I was told by my mum.
The symptoms first showed themselves in november as I would be unsteady or even abit of a clutz it was humerous to me at times I suppose as I attributed the cases as being isolated cases. I have the adult onset form of X-linked ALD as far as what I researched online it has the same symptoms of the childhood X-linked ALD however the adult form is slower or so I have read. At the moment the initial symptoms are preseent for me, a loss of the fine motor controls which meant I had to forgo computer gaming as a hobby of mine and I was annoyed earlier today when the monitor on the computer was flickering I knew the possible cause but I just couldn't get to adressing the problem just a loose DVI cable on the back of the tower and the monitor.
The next sectiom is about my girlfriend.
Through high school I had an eye on her? I don't know what she makes of it xD. Anyway being a younger person in the grade, I could not get the courage to tell her and my parents didn't want any relationship until after the Higher School Certificate. We studied or revised for the exams in the local library and we walked back together as she just lived in the townhouse complex next to mine, oh the convenience. A friend joked that I could wake up early for a jog and she would leave in a few minutes for a walk.
Hmm I wonder if she would get angry if I mentioned this =] when I first confessed to her she said “are you serious” then ran home as wee just walked past her twnhouse complex
I walk her home when we went out with other people, as I lived so close I would tell friends that it was ok to drop us off together infront of her driiveway or whatever a few minutes walk to her place and then home. Though I was sort of shy towards her when my prents drove her us home and would watch her walk back from the car.
She does not allow me to think thoughts of “never” and “ever” about the future. I didn't know at the time that my illness would be so severe had I known I probably wouldn't have started this relationship. We have been togather for 38 months I hope i'm getting it right
I have had to rely on friends to help me more when we go on outtings. Let me say it now that I dislike it however a friend said “how would I feel if you hurt yourself and I could've prevented it” I just don't want to burden anyone or to trouble anyone.
I encourage you to watch “1 litre of tears” as that could help you understand some of this the youtube link is http://www.youtube.com/watch?v=MA5_IdSfdZw there is a movie made in 1992 called “Lorenzo's oil” which documents the life of a child with the child form of ALD.
What happens next? there is no cure for it but there is one way to slow the progression down and that is through bone marrow transplant but it will only work if it is done relatively early into the progression of the symptoms, i wonder if 2-3 months into it is early enough for me. The timing of it was unfortunate as it was during the christmas break and doctors are people too and deserve a break.
A brief account of what I do at home through the day, I play some magic the gathering online, youtube abit, strike conversations over msn, phone people, do some reading (currently reading harry potter, yes I am slow to the fad) and some rewatching of old tv shows and/or drama. Its what I do besides the usual eat, sleep, shower, brush teeth and toilet
I kept a diary for a week or so but if people are interested in my day or days then I can spend some time writing diary entires. There is so much more to recap about my life thus far that I can't just sit here for hours typing it out so I guess I can write about it in future diary entries.


  1. hey Jacky,
    thanks for sharing your journey with us thus far. I can't imagine what you're going through at the moment but Almerick and I would love to hang out, spend time with you and play board games with you soon! :)
    I too am slowly catching on to the Harry Potter fad, I just finished reading the second book and it is awesome!
    Your girlfriend is awesome, I respect both of you! and I look forward to meeting her :) And how you guys started dating is really cute :)
    Let's all hang out and make the most of now together.

  2. Hi gil,
    Yes if i had met you earlier (geez thanks almo), I would have liked to get to know you more. Its really nice that we get to play some board games tomorrow. yes i too am up to the 3rd book in the harry potter series. thanks for the support and this is the reason i made the blog, so people can see the situation.

    cheers, Jacky

  3. @ Gil: I look forward to meeting you too :)

    @ Jacky: There's more to that story, I shall help!
    After she 'ran' home, she noticed she still had his formal tie in her bag. Might as well give it back right? So she called him to meet her outside again, right after the confession. Awkward much?
    Jacky: jeez, did I shock you that much? xD

  4. lol glad to play board games tomorrow.... stupid Bel hahahha.

    Just a suggestion, i reckon you should put people's names in your blog, maybe ask them first if you're unsure if they wanna be in your blog or not. But yeah it seems cold and strange when you say 'my friend' :D i'm happy for ya to put my name up :D as Mr. MUNKY MAN OF BANANA POWA!!!!

    @Seney: buwahahahahhaa "After she ran home, all embarrassed after the confession, blushing and giggling, wondering what to do, she found her crush's tie in her bag. With a grin and more blushing she got to meet up with her beloved once more.... :D"