what i heard the specialist say and a wee bit of a rant about it.

i heard him tell me that i am more anemic now than when i started this whole journey 3+ years ago

and then i asked him to print out the numbers for me and there they were...

lower and lower

i'm at an all time low.

and  that's pretty darn low people.

i heard him tell me that i was making my life more difficult for myself by being on a liquid diet and that there is no reason to not eat whatever i want to.

but...but...but...

he told me that my reactions to food have nothing to do with my colitis and i have a different disease that is causing the flares and the love affair i have with the bathroom.

he told me that  the side effects to the remicade were not good and that it wasn't working  since i'm not in remision and so i wouldn't have to take it anymore.

the call was made. the remicade was discontinued.

just like that.

a gut wrenching decision that took me so long to accept was so easily reversed.

i found this disconcerting. even though i don't want to take the medication i still was rattled by the ease of the decision.

that was after i described my recent symptoms and side effects and he asked me

"are those known side effects of the medication i put you on?"

does he not know? does he not know?

this was not some easy going medication. remicade is serious stuff.

 i just think he should know.

that's all.

just know what you are giving to people who are trying to trust you and trying to get back to living.

he spoke about the waste of money it was to eat organic and how there was no difference between the two

and i tried to explain that i grew my veggies and my mom in law provided me with kefir

i wasn't wasting money i felt like i needed to say

i'm trying to get my life back.

i felt like i needed to defend myself and i'm not good at defending myself and i cried hot tears at this point.

"what's kefir" he asked?

and then proclaimed no difference between raw goats milk and store bought cow's milk.

he was full of proclamations

and no answers

and i felt like i was frustrating him because i'm not responding to the treatments the way i should be and i'm not improving no matter how many prespcriptions we try.

the next one's are all in the research stage and i whispered

"no thank you, i'm not really into being researched on"

and finally, he looked me up and down and said

"you're not really sick. you don't have a fever or malaise do you?"

and i reilized this relationship was over.

i cried all the way to the beach.

and then i let the wind and the waves wash away the anger and the confusion and the hurt and the shame.

when owen got home from work i asked him if what i heard was true

"did he really say those things?" i asked him,

wondering if maybe i was misunderstanding and too upset to be accurate in what i was taking away from the visit.

i think i was secretly hoping he would say yes.

yes, i did hear wrong and here is what he said...

but owen shook his head,

 looked at me with great sadness in those hazel eyes of his because he had been there with me and he knew, just a little bit, how hard that whole visit would have been for me.

and again i'm staggering.

 not under the weight of loving words though, like last week.

just under a weight.

i looked up the definition of malaise this morning.

check it out..i think it  describes how i've been feeling pretty accurately.

i guess my outside's just don't look like my insides so i can trick people still.

should have worn my pj's and not done my hair.

maybe then he would have taken me seriously.

oh life.