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.

surreal

it's been mostly a surreal time. going from the never-enough-time vigors of my first year of law school to this so fast. it's hard to make sense of it. one day i am going to wake up and it's going to hit me. a blood infection? REALLY? how did that happen? how many possibly fatal events must one person go through in a life time? i keep thinking experience will make the times in the hospital more palatable. but that's not true. i only hate it more.

spending a week trapped in a dark room tethered to an iv stand not sleeping because of the every 6 hour iv antibiotics and the 5 am blood draws and the dying woman in the next bed yelling hail marys to a woman named betty who is never there. and the interns and medical students and residents during rounds spouting such misinformation that at times i can't help but HAVE to correct them - both because their arrogance begs of it but also for the safety of their future patients.

i passed my time by asking questions i knew they couldn't answer and then answering them for them before requesting the attendee. and it is scary when the person responsible for your life doesn't even understand your heart disease.

(Shut Up Doctors. If you DON'T know the ANSWER Don't Just Make it Up. Are you Really So Arrogant/Ignorant that you Think You're Rudimentary Understanding of my Many Complex Health Problems is Better Than My Understanding? I Remember Your Faces and I Remember Your Misktakes and they Do MATTER. So Just SHUT THE FUCK UP if You Don't Understand My Disease. I Don't Need to Teach You When I am Laying in a Bed Trying to Fight an Infection that could Kill Me).

Usually the Attendee is the ONLY ONE who seems to understand anything.

and coming home was terrifying. visiting nurses, that creepy picc line, monitoring my temperature four times a day, feeling acutely aware of my partially collapsed lung every time my breath caught walking to the bathroom.

and the iv antibiotics. they weren't easy. the meds needed to be mixed, lines had to be changed, there was flushing and setting the speed of the infusion. and every thing really mattered. any mistake would have been serious. and it was every six hours. which was every 5 hours because each infusion took an hour. and that makes for very little sleep.

i would hold the connector out so joe could wipe it with alcohol swabs and i would watch in horror as air bubbles snuck their way up the tubing from god knows where and many times i spent the hour crying and begging and telling joe i don't want to DO THIS anymore. and he would say i know, i know but he would do it anyway because he had to. because those antibiotics would save my life.

and we took alot of naps. and drives. and we ate a lot of ramen.

and that was last month. things are normal now. but that's a weird thing to bounce back from. and i am still waiting for my leg to decide it's ready to walk again. and it is christmas and we have the most beautiful tree. and i am baking. and writing cards. and holding out hope for those miracles that everyone promises when the year ends and begins again.