if i have to see one more specialist…

frustrated, screaming woman… i might just scream. i have no desire to explain everything to new doctors, but it seems that’s what i have to do.

first, i’m changing my rheumy when i can find one who takes my insurance.

i’ve been referred to a neurologist because on my medicaid disability form, apparently my rheumy has to say that i CAN work b/c as far as his speciality (arthritis), i’m ok to work. “people work with pain.” duh. i can work with pain but i CAN’T work if i’m afreakingsleep! fatigue is my problem and so is weakness and muscle pain rather than joint pain. sooo … off to the neurologist i go because “your fibromyalgia seems to be on the *worse* side and that’s not my speciality.” grrr.
i understand, but still…

oh, and i had it out with my rheumy. in 3 years, he’s never once asked me what a typical day is like for me. i showed him my function report for my first federal disability app and he was surprised at how long it was (took me forever to fill it out..) but he didn’t really care. he gets his facts mixed up to where i have to correct him. i get that he has a lot of patients, but still — look at MY chart and pay attention to ME while i’m there. pretty simple. heck, my freaking counselor remembers things about me that i don’t! i’ve only been seeing her about a year longer and, actually, less often. (that’s changing soon, thankfully)

now i have to see my psychiatrist again because they think the original bipolar II diagnosis from 9 yrs ago that they changed simply to “severe depression and anxiety” about 4 years ago was the wrong diagnosis. all these doctors take the word of the doctor before them instead of starting from scratch and doing testing on their own. and then they try out meds on you and while you’re waiting for them to *work* you’re either sleeping constantly or bitchy or whathaveyou…

it’s just all so annoying because this testing is going on during the appeal process on both the federal and state level, so until they get answers, they can’t decided. or they’ll just decided i’m fine b/c there’s nothing more than what there was the first time (that i can work b/c my arthritis isn’t that bad), and then i’ll have to go to a hearing w/ a lawyer and all.
do they not realize that in itself is enough to make me sick … the stress of dealing with all this crap?!

anyway, i’m just venting. haven’t done it on here in a while, obviously.
just been talking to friends and stuff. but it’s just getting so bad that i need to rant elsewhere.

and i need to be proactive!! seriously.

i have this whole new schedule for all the stuff i have to do every day (which is an insane amount even for a Healthy person), and it seems to be working well so far. so, i’m hoping to be active in everything i’m involved in now, instead of just my other book.

i want this book finished and published, too!
especially with the constant reminder that people just don’t get it. no matter who they talk to or anything.
and i get that it’s hard for them to understand, but it seems some people don’t even Want to understand and that’s the most difficult.
they see things their way and that’s it. period. end of discussion. don’t talk about it anymore b/c it’s all just words.

i’ve been told the most insane things. things i honestly don’t even want to repeat online b/c they’re either shitty or absurd or whatever..
things that really hurt, seriously.
it’s like, these people have never experienced it and so they just can’t wrap their heads around it. that you should just be able to decide what you’re gonna do and “do it.” simple as that. yeah…. right.
they don’t even care what doctors have to say, or anyone else who knows what it’s like.

the problem (well, not problem … i’m GLAD there are people like this) is that the people with lupus that others encounter are the ones who are in remission or they don’t have other things going along with it or maybe it’s not that bad or they’re on the right meds … and so they’re out living life, working full-time jobs — which is Fantastic.
but what isn’t seen are the people who can’t leave bed, for the simple fact that They Can’t Leave Bed … so you’re not going to meet them or hear their stories except through groups online, most likely. or people who don’t go out much b/c it’s too hard to deal with. or whatever… people who are having a hard time with it so others don’t get the chance to meet them.

it’s just all so tiring. and now i have to finish cleaning up odds and ends around the house b/c my mom is coming over to watch my kid so we can go to a friend’s birthday party. which i really want to do, but my body doesn’t want to. not after being gone all day yesterday and then actually being productive today. but i have to go b/c A) i want to and i’ll be angry with myself if i miss it and, B) it will just cause That much more drama in the *not understanding* situation if i bail b/c i don’t feel well.

so… i guess that’s it for now.


About Amy Cate

I have lupus. I'm doing my damndest to advocate and spread awareness. This is just one of the ways I'm involved =D
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