Re: and i cried writing it.luxefibreApril 16 2008, 01:54:29 UTC
all of the invisible diseases...they really steal your life in bits and pieces, you feel crummy, but you don't actually realize how much you have changed until it is done. i had a rough week, i had orders that needed to be shipped last week and i was too tired to do anything. i didn't talk on the phone, knit, draw, nothing. lay in bed. we used to do stuff all the time. we went to shows, out to dinner, shopping, fleamarkets, all kinds of things. i had lots of friends. i used to be able to push through it when i felt shitty, but after a few really bad times where i was out of town and at a show or something and couldn't get out of the situation, so i was super sick in front of a lot of people, i have developed this constant paranoia that it will happen and i am not sure if i make it happen. and people who are well don't understand. they get annoyed. they think that you make excuses all the time, and they aren't for real.
if you ever want to talk, i would love that. shoot me a message if you want to and i will send you my number, or you can send yours.
Re: and i cried writing it.asugarcoatedlieApril 16 2008, 03:31:21 UTC
i remember, vividly, the first time that i had the worst brain fog, i couldn't continue doing a haircut. i was at my rusk level 2 training, for senior designers, and i sat there listening to everything he said, writing down the process, and getting it. i was a few steps into the haircut, and i couldn't remember anything. i mean, nothing, as if i had alzheimer's, and i had no memories. these models, we have to search for them, and make them feel like they are safe, so in my desperation of feeling a bit hopeless, i tried to continue. i had to call a one of directors a senior master designer, and tell her to explain it to me. she did, but still, nothing. she sat and watched me, curious, i think, to why i couldn't get it. we are, after all, a small chosen few that get the to have the title of rusk designers. we have to be the best of the best, in all aspects of the field. after a few seconds of not knowing what to do, i handed her my shears, walked out of the room, and she followed. i tried to explain the lupus, and all the while, i saw the look of how absurd she thought it was on her face. i cried and cried. she tried to tell me it was ok, that at every level training, she has cried, and that it's ok, to not get it. she thought i was making an excuse. as if i have that much pride to say that i cannot do something. i don't know which was worse, natasha, the feeling of being powerless because my body doesn't work the way it should, or the intensity of pain when i came to the realization that people may never get it, because they choose to believe what they want. That was the day that I realized that i may never be able to do hair the same way, again. it still hurt, and hurts. i can overcome the physical pain my diseases produces. but that kind of pain, still rings fresh in my mind.
there are so many happy times in my life, but i still have to wake up everyday, and know that i have lupus, and i can't just be normal.
Re: and i cried writing it.luxefibreApril 16 2008, 23:10:12 UTC
i feel for you. i don't know if that woman didn't believe you or if a "normal" person just can't understand what that could be like. my parents, who live across the country now, will push me to go out, to get dinner, to do whatever it is they are doing, even if i tell them i am not feeling up to it. i sometimes think that it is their way of coping. they know about all of my health issues, they know i am not lying, yet they act like i am a liar, or a faker. i really just think that people can't wrap their brain around it, or don't want to. it doesn't make you feel any better, though.
working by appointment isn't so good when you have unpredictable spells, either.
if you ever want to talk, i would love that. shoot me a message if you want to and i will send you my number, or you can send yours.
xo
natasha
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i was at my rusk level 2 training, for senior designers, and i sat there listening to everything he said, writing down the process, and getting it.
i was a few steps into the haircut, and i couldn't remember anything. i mean, nothing, as if i had alzheimer's, and i had no memories. these models, we have to search for them, and make them feel like they are safe, so in my desperation of feeling a bit hopeless, i tried to continue. i had to call a one of directors a senior master designer, and tell her to explain it to me. she did, but still, nothing. she sat and watched me, curious, i think, to why i couldn't get it. we are, after all, a small chosen few that get the to have the title of rusk designers. we have to be the best of the best, in all aspects of the field.
after a few seconds of not knowing what to do, i handed her my shears, walked out of the room, and she followed.
i tried to explain the lupus, and all the while, i saw the look of how absurd she thought it was on her face. i cried and cried. she tried to tell me it was ok, that at every level training, she has cried, and that it's ok, to not get it.
she thought i was making an excuse. as if i have that much pride to say that i cannot do something.
i don't know which was worse, natasha, the feeling of being powerless because my body doesn't work the way it should, or the intensity of pain when i came to the realization that people may never get it, because they choose to believe what they want.
That was the day that I realized that i may never be able to do hair the same way, again.
it still hurt, and hurts.
i can overcome the physical pain my diseases produces. but that kind of pain, still rings fresh in my mind.
there are so many happy times in my life, but i still have to wake up everyday, and know that i have lupus, and i can't just be normal.
Reply
working by appointment isn't so good when you have unpredictable spells, either.
xo
Reply
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