inherently

last night i dreamt that i was at my family's cabin in the woods of the cape only instead of the peace that i usually feel, there were stray tigers watching us in the night, dark shadows lurking, my father standing outside the door not wearing his glasses with blood on his hands, his face covered in bruises.  it was terrifying.  and i called to my dad and i saw his hand on the screen door, the bloody print it left. 

but when he came inside he was smiling and he lead me out the door to the sky outside and the stars were the brightest i had ever seen and i could see every constellation as clear as it were that iphone app that draws it out for you and the strangers in the woods turned into cousins who have grown their entire lives on the same street as I and the tigers were gone and in their place my sister, my mother, my nana glo.  and the blood print was still on the door and i don't know how my dad had fallen but we just stood there together, he and I, watching the sky and I didn't have to feel even the slightest bit scared (scarred) anymore.

prognosis

a month or two a go my rheumatologist who lacks the basic nurturing skills that one would desire when getting a prognosis (as the diagnosis still elludes me) shook up my world in such a calmly delivered explanation it has taken me all this time to even hear it.

she told me that my antibody results and clinical features are not definative yet - but lend themselves to an eventual diagnosis of Mixed Connective Tissue Disorder - an exciting overlap syndrome that combines aspects of lupus, sclederma and polymyositis.  there is a chance i will not progress any more than i have thus far but it's much more likely that in 5 - 10 years the disease will progress to the full fledged disease.

she told me it's a bad diagnosis.  that people can die from it "and it's not a pretty way to go".  she said those words.  why, i can't fathom.

and she told me to enjoy the time i have now.  to do the things i've always wanted.  to take advantage of this time i have now.

and it scared me and i don't really know what to do with that information.

except to say that i am getting married and i am going to spend my time celebrating and honoring that love and i am not going to give all my energy to law school.  i am going to give all my energy to love.

forever.

i have love and a job that i can do and enjoy too, and i have a fever and this sunny day and we found a place we want to live forever and we actually have the money to buy a house and to go on a winter honeymoon to somewhere far away like ireland or costa rica too. i am terribley lucky and unlucky too and i hope that my health allows me to have kids and i hope that my nights allow me to sleep soundly and i have found peace before i will have peace again kayaking with my beau to the little tiny island where we laid picnics and watched mothers sitting on their eggs and where he proposed with the most beautiful surprise ring last week - and where we will join our hands and names forever in two months more.

alchemy

there are things we were supposed to know. mixtures, potions, pillow talk for that child you had been. or will it be again.

it is sunshine here but cold. sometimes nothing feels the way it looks like it should.

again imagined myself with one foot in each world. wondering if i will mind the dying - when all i picture when i think of death is ivan waiting for me on the other side.

and the other side has become green fields and gauzy shirts.

like you can really just run and leave things behind.

it is april. yesterday was kira's birthday. tonight i share my home with a stranger when all i want is to be alone on my porch.
i have to make big decisions about things like going back to law school or staying here or what else and i have to base those things on the intangible of my health.

i was going forward before like everyone told me, as if i were as healthy as you. and that lame advice will have cost me $30,000 for nothing because really we all know i am much too sick to return to school.

i am pissed you didn't warn me better.

i am pissed that i am not as healthy as you.

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.