you would never even think about these things unless you have lupus.

[asugarcoatedlie]

Questions such as, "Should I really go to the ER, for this cold, that I know is developing into a nasty upper respiratory infection

Comments

[luxefibre]

first, i wish you lived near me. i need a good hair stylist badly. bad. ly

and i cried writing it.

[asugarcoatedlie]

i love doing hair. it was really the only thing that kept me going when i was first being diagnosed. i thought that i could continue it, and fight the good fight, ya know? but i lost the battle, and the war is far from over, and that sometimes leaves feeling like there is no hope. i imagine that we feel a lot like survivors of world wars, feel. the desperation of not knowing what may come next, the hope that one day the war will be over, and our war torn (disease ravaged) bodies, and spirits, will overcome it

Re: and i cried writing it.

[luxefibre]

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

Re: and i cried writing it.

[asugarcoatedlie]

i remember, vividly, the first time that i had the worst brain fog, i couldn't continue doing a haircut