just once

just once i would like you to do the right thing just because it is the right thing. i have a fever again/still. i don't have the energy to anything with you. i am fighting for each day. just hoping that my body can do this. i am still surprised this has not all gone away. i hear them say autoimmune disease and i hear it, i do, but it's just that deep down and inside i still feel the same way i have always felt so it's hard to understand the things that my body now won't do.

so lets hope for remission or treatment or something.

or could i trade my 50 years of disease for the 4 years of cancer that will either kill or save you.

Victories

Into my second week of work and I am so exhausted my bones hurt and my doctor said I couldn't do it but I think I can. And I am. When you are as sick as me the smallest things become victories. And my small victories are huge today.

say it once

i am starting a new job tomorrow. full time. another non profit and i think i will like the work. it's stuff i know - helping people get benefits and the things they need to stay in their housing. and i am excited to have a place to go each day again. to wear ironed shirts and to pack lentil salads and apples for my lunches. and i hope that i can do it. that i don't get too sick. that i am not too tired to make it through the days.

a line

draw a line. find some dignity. walk away. what is there to be afraid of. so what if my lungs are scarred or the muscles don't work that are supposed to keep me breathing. maybe it's easier this way. maybe i don't want to breath so much. maybe i don't want to take so much in. maybe a short life is just as good as a long life. maybe it's just shorter.

Healthy people like to think that us sick people don't mind all the tests and scans and hospital trips we take. I think it makes people feel better. But it's not true. Swallowing barium, getting injections of radiation, blowing into tubes connected to machines, these things don't become magically pleasant when you have to do them all the time. But you do learn to do it. You stop needing to read the print out from the radiologist on how to prepare. You develop reward systems (an iced coffee after PET scan or pizza on pulmonary function day) and you find crutches (Ativan for the MRI's or a Bailys for those unlike me whose medications still allow them to enjoy a drink once in a while). And you learn fight songs. You scream in your car as you cross the bridge that separates the life you love in CAmbridge and the things waiting for you in Boston. You listen to loud songs and grunt like Rocky, you mouth fuck off to every car that gets too near to you, you lean far back into your seat and sing every word over and over til you are ready to get out of your car, to climb the hill, to go inside and meet what waits for you inside. It turns out my lungs might not be good. I wasn't quite ready for this one.

You wouldn't believe the songs that make me cry since Ivan died. It's just that we shared the 90's and you know what we listened to. I am at MGH for the day. I am here at least twice a week these days and often more like daily. I admit it's grown comforting like sometimes I think these people here, these doctors and patients might be the only people in this city who really know what Joe and I go through. Praying for health but sleeping each night with the sickness tucked close to you.

belly aches

I have a stomach bug and it is as awful as always. Chicken soup, the dizzy under-nourished feeling, hiding from the light of the tv.