as i read back over the last post, and then the comments, i felt like i should go back and clarify some things. then i want to try to respond to the comments (which i always read and appreciate!)- but don’t think i don’t care in case i don’t have time for both a post and feedback…

i feel like maybe i left everyone with the false impression that i was a bit more heroic about this whole mess than i actually was. so i want to tell you all the real deal, both in the interest of honesty and disclosure and also so perhaps if you ever have loved ones in similar predicaments (which i really hope you don’t), then you may be better able to help them.

my first time around with this can’t-tolerate-food-thing i threw up if i even put food in my mouth, and that isn’t a bit of an exaggeration. i could sip a coke slurpee a bit at a time over the course of a day, and once in a while i would get a window where i could eat a tiny tiny bit. i remember laying on the couch feeling pretty limp and miserable while *h and some friends discussed that i had eaten 5 almonds in several days and that perhaps i was eating on the sly, because you couldn’t possibly really eat that little. they took turns suggesting different foods that might appeal to me and even though i begged them to stop because it made the nausea even worse, they were so desperate to get to me eat, they just kept saying different foods and combinations, “well how about this? have you tried this? what about that? have you eaten that? did you throw up that? why can’t you eat that? you always love that…” it was awful for me and awful for them and within a few hours i was back in the ER with uncontrolled vomiting (which at that point was pretty much just dry heaves and stomach acid).

when i was finally inpatient, the doctors asked me how i was feeling emotionally about being so sick, and not realizing what they were getting at, i told them i was pretty demoralized that i was so sick for so long and nobody could figure out what was wrong. so they called for a psych consult.

which now that i’ve been through it i can tell you means they have a foregone conclusion that you have a mental or emotional problem, and it is just a matter of putting a label to it so they can mediate it.

but i didn’t know, so i thought maybe the psychiatrist could help.

i was almost desperate by the time he arrived in my room. “do you think i’m causing this?” i pleaded with him. i was so at my wit’s end that he could have told me anything and i would have believed it. “well,” he said sagely, “you do seem rather anxious…” (duh. i was away from my kids. i had been in the ER more than in my own bed. i had some bizarre disease that was killing me day by day and everyone thought i was making it up but i knew i wasn’t and i couldn’t will myself to get better. so yeah, i was feeling a bit “anxious”.) “what do you think i’m doing wrong?” i whined. (ugh. such a teacher’s pet. just let me get the answer right. oh pleasepleaseplease…) but i so badly wanted to fix it. i so badly wanted to straighten up and fly right and i thought maybe this was the guy with the answers, because clearly the other doctors were dumbstruck.

so of course he suggested i go on antidepressants. and even though i thought that sounded weird, and even though i asked him how that could help and how that could have anything to do with what was going on, he very patiently explained that i seemed very depressed to him (again, see circumstances above) and that he felt (they always feel, never think) like antidepressants could help me.

so, i started those happy pills the very next day, promptly got even sicker, promptly came to my senses and went off those stupid things, and never looked back.

but he- and the other doctors- and the nurses who aren’t allowed to contradict the doctors- and my family who didn’t know what to do- and even i – was so upside down that we got talked into me having an emotional problem that wasn’t there and being medicated for a condition i didn’t have because the doctors couldn’t figure out what was really wrong.

and, for the record, the doctors told me i should wait for the side effects from the antidepressants to subside and give them a chance to work.

SO glad i didn’t listen…

but this time around, guess what?

because i wasn’t throwing up and only lost my appetite, it wasn’t so clear cut that it was the same thing.

and since i wasn’t throwing up, the dehydration wasn’t as dramatic so i wasn’t in the ER and things didn’t come to a head as quickly and we didn’t recognize it- even though we’ve been here before.

and this time- yet again- i still let myself get talked into the self-doubt.

maybe i really did cultivate an eating disorder.

maybe i really was just developing weird food issues.

maybe i really was being emotionally manipulative with my family for some reason…

and the thoughts swirled around my head and kept me up at night and had me seriously wondering until i didn’t even know myself.

was it really that i couldn’t eat, or did i just not want to eat?

and i had to keep checking in with myself.

and i kept telling myself that tomorrow i would try harder.

and when i went into the hospital the doctor asked me, “is there any chance you could be depressed or under stress?” and i said “you know what- i don’t expect you to solve my eating problem. let’s just get me rehydrated and get my electrolytes back in balance and then i can go home and figure out the eating stuff later.”

because i just didn’t have the emotional energy to fight this fight again.

especially when i didn’t have the 100% conviction myself that i was certain this was a migraine issue.

because i had asked my neurologist about it, and he had given me reasons why he didn’t think it was plausible.

and they sounded plausible to me.

and when you are on shaky ground people can talk you into crazy.

so now i know better.

now i know how i react and how i get sick and how i need to be in the face of other people telling me what is and isn’t the case. and hopefully next time i will just be that much more insistent.

it’s said that life is a marathon and not a sprint, so i guess i’m on this road for the long haul, health problems and all.

although given the choice, i’d rather have it easier.

when people say, “given the choice, i wouldn’t change a thing because my challenges make me who i am as a person”, i think ‘you know what? then you can have my challenges too if you like them so much because i can’t stand then. i’m good and sick of them. in fact, i usually hate them. i think i was a perfectly good person before i had these challenges and i would still be a perfectly good person if they went away tomorrow. my blog might be slightly more boring but i doubt it. my family’s still pretty entertaining.’

anyway, what was the point of this post?

that it is SO easy to let other people plant ideas in your head. that it is SO easy to let someone else’s reality become yours. that even what you are living and breathing is subject to distortion when your own lens is shaky enough and the outside lens is strong enough.

and that i didn’t want you all to think i was some big awesome person who marched into the ER by storm and told them my diagnosis and took no prisoners and forced them to listen to me.

but for you all to know that i wavered and quavered and questioned and only grew stronger in my conviction as time went on…

and i guess that’s all i really wanted to say.