Saturday, March 5, 2011

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.

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