C'est la vie de Mabel

今天逃離房間遊戲總算是破關了
還跑去聊天室幫人解答
都用英文...真是緊張又過癮

夢大批踢踢和無名也好好玩
真是有趣的愚人節

美國的病友Ashley寫了好長一篇日記...
先把它放在這裡慢慢看.........
31.03.2004

WOW - what a month brings! A little over a month ago I was stressing about clothes and ready to go to University of Miami this fall! And now I am trying to reduce stress and will probably be going to school online in the fall. This whole thing is crazy - it has changed my whole life within days. It has changed the lives of my parents and my brother and my sister - what disease has the right to do that!?!?! If I'm not tired and trying to do some of my homework for my online classes or eating or playing free cell. I have gone from 122 to 145 in a matter of weeks - thanks pretnizone! But at least I don’t care - I was underweight before. I still am gaining weight by the day - oh what joy.

Its weird how relatives that I haven’t heard from in decades (literally) want to form a relationship with me now. Not that im "complaining" but I was alive before all this happened too. It's weird how an illness makes people feel..."guilty" and makes them want to do something tangible - again not that I'm complaining.

A lot of my symptoms have gotten a lot better - thanks to all the solumedrol and pretnizone - but I wonder why they all have not gone away? And now I am getting some new ones - I think maybe because the steroids were "masking" them before. Like sometimes randomly my fingers will feel cold around my cuticle. And sometimes my legs will feel really weak. I dunno - I just roll with it.

I had to just do 3 MRIs all together - brain, C-spine, and T-spine. And we found out good news and bad news. The bad news is that I have lesions on the T-spine-where they previously had told us that I shouldn’t have. The good news is that none of the lesions showed up to be active. Which is great - but then why do I still have the symptoms - like the l'hermittes sign and the back pain? I dunno - we are going to a neuro specialist tomorrow to get more "knowledge".

Sometimes I dunno what to feel about all this - it's such a big change. The rest of my life is now in question? I had so many plans - and so many things I wanted to do. Which the MS can probably change. It's scary to think about the future - knowing that I will have to live my life in unpredictable change. But I guess that's how everyone lives - it just seems so much more annoying now that I know a force - the disease - has control.

I have been looking for people my age with this disease. My neuro says its not uncommon - but it seems like it is to me. We are joining this support group soon so I will hopefully meet more people my age...or other people older. But it seems to me that the people that get the disease and are older can't understand what I am going through - because they got the disease later in life. I remember reading about Montel and how he is going through MS and how he can't do some things and how he has had to adjust his life. And its sad-but I think "at least you got to live yours first".

I had back pain - like my lower back that usually came after I had been standing up or a while - after I took a shower or something. Also I had tremendous pain when I laid straight on my back - and then sometimes on the side - it would all depend on the night. But I could usually depend on the pain coming when I laid on my back. I also felt these tight feeling on the side of my body - like there were rubber bands connecting my armpit with my hip - so whenever I would lean or sit I would feel it hurting - like the rubber band was stretching. I was just put on this medication called Neurotin. I have only been on it a few days but I have had no back pain at all. It's like a crazy miracle drug - because even though I take it 3 times a day it works and I feel no pain-even when I lay down. It makes nights much better. The only problem is that it makes you tired – which is good at night but not during the day. Over the few days I have learned how to suppress the tiredness from the drug.

I also have the l’hermittes sign, mine has gotten worse and seems like it comes randomly. I don’t know what we can do. And my L arm also feels...light. Like I have lifted weights and then all of a sudden stopped. It feels like it could swing off if I let it...?

I am now on rebif. When I just started it was horrible. It has been about 2 weeks and even though the needle is shorter than the Avonex one, I just haven’t been able to stab it in my leg. Right before I am suppose to jab it in, my brain thinks about 100 things at once: I can't believe this is happening, I can't do it, I can't believe this is for the rest of my life, it's gonna hurt, I wish this was all over. And then I start trembling and end up crying like a baby :) - so my mom consoles me while my dad puts it it - it's great to have parents who actually care about how I feel - they now say we can all switch turns in the week, who sticks me.

The thing that scared me a while ago is the doctor just showed me my MRI - before he said I had a large amount of lesions. But when I saw them it was overwhelming - there were so many and then he showed me the spine - I had some there too. Anyways I keep saying it is such a blessing that I have no physical disability and am currently heading into remission.

Someone wrote me this about how they feel with MS "unless you are 'disabled' in legal terms many people look at you and think you are a hypochondriac." Hahah - which I guess is true. That’s why when people ask "how are you doing". I always give them a short "fine" or "OK". Because if you look at me I look fine - but they don’t really want to know how I am actually feeling or we would be standing there all day. And sometimes I understand how people could think I could be a hypochondriac only because no one can see the weird things I feel - and I complain about it all the time. I am starting to try not to but it's weird because I sometimes expect for other people to feel what I am feeling.

Sigh, every day is different...