denelian

and so have every other Ohioan patient in long term pain management who doesn't have cancer.

see, there is a problem with Rx drug abuse. there are people who *pretend* to have chronic pain to get pain meds, then sell them on the street.**

so, because of this, there are new regulations.

regulation one: unless a person has cancer, they are NO LONGER ALLOWED to have any narcotic for breakthrough pain.
regulation two: unless has a person has cancer, they are no longer allowed to have dose of anything that is higher than 80 mmg [micrograms] per 15 minutes. if i have understood the math, this is the equivalent of a fentanyl patch that is 80 mmg [it's a 3 day patch that would give that exact dose - 80 mmg/15 minutes - *IF* fentanyl CAME in that dosage] *OR* Oxycontin 15 mg/8 hours


what this means for me?

well, my dose of meds has been shrinking for a WHILE. 15 months ago, i was on a fentanyl dose 150 mmg [it's a 3 day patch] *AND* an oxy dose of 30 mg every SIX hours.
2 months ago, as of this friday, it was fentanyl 100 [*MY* choice] and oxy 15mg/6 hours.
now?
it's 75 fentanyl. PERIOD.

can we just cover - that first dosage from 15 months ago? worked. i dropped the fentanyl patch dosage because it was fucking up my skin, not because i didn't NEED that high a dose. i absolutely did. that level - fentanyl 150 oxy 30 - kept my pain level between a 7 and an 8. closer to 8, yes, but any MORE and i couldn't function AT ALL.

it's all about balance between meds that fuck your brain and pain that fucks your brain.

when my meds got lowered to 100 and 15, i had to do less. i quit going to LARP, because sitting for 4 hours once a week was took fucking much - it was, quite literally, taking me 3 DAYS to recover from those 4 hours. and it was NOT AT ALL FUCKING FUN TO LARP, it hurt too bad, i couldn't concentrate, couldn't stay in character.... yeah.

now i was forced off the oxy TOTALLY, and at ONCE - no weaning. withdrawal FUCKING SUCKS!!!!!!!!!!
it wasn't AS BAD as it could be... at least i still had the [lower dose of] fentanyl.

last month, my pain management doctor told me -quite calmly - that she wouldn't lower my fentanyl dose for another month or two. i FREAKED. she didn't care. i told her - AGAIN!!!! that it wasn't working, and her attitude is that if it doesn't help enough, then i shouldn't take anything at all.

can we cover the fact that my pain hasn't even been as LOW as an 8 since this happened? most days, IT'S A FUCKING 9. i haven't slept since SUNDAY because i hurt THAT BAD.

and she's going to take me off FENTANYL, TOO. the ONLY reason she isn't just cutting it off? is because that would probably literally kill me.

within a year, my life? will be completely, totally untenable.



i am terrified. i have, over the past year and a half, been cutting most of the pieces of life i still had OUT, because i have become unable to maintain. typing HURTS - it's taken me 2 hours to type THIS much.
i am going to be EVEN WORSE WITH NO RELIEF IN FUCKING SIGHT

i don't know what to do.

i need an advocate. a MEDICAL ADVOCATE. i don't know how to get one. i've TRIED - but every program i've called either only does people over 65, *OR* wants me to declare myself literally *incompetent*
I AM NOT INCOMPETENT.
but once even the little amount of pain relief i still have is gone? i might be then.

i don't drink. i've never enjoyed it, at all - and i kicked and screamed and fought for MONTHS to not go on ANY of the pain meds, and the ONLY reason i caved? is because my surgeon REFUSED to operate on me UNLESS i was on them... and then i was, literally, in so much pain that i COULD NOT THINK WITHOUT THEM.

i am wondering is there is ANY chance whiskey will do anything. at all.

i am...
i am so beyond terrified. i.......
i don't think i can do this.
i don't know WHAT to do.

help? advise? something?


also, there is this:
http://www.wikihow.com/Understand-Someone-With-Chronic-Pain


** Can someone tell me WHY WE CARE?!?! dude, i don't fucking care if someone does HEROIN, so long as they aren't hurting anyone else! [and a HUGE part of "hurting someone else" comes from people do to GET heroin - or coke or meth or WHATEVER - BECAUSE it's illegal. and I. DON'T. GET. IT. why the FUCK do we CARE?!] if people want to fuck themselves up, then let them. do i approve of people doing heroin and etc? not my business, so long as no one is getting hurt. personally, i think the rec drug trade should be legalized, regulated, then TAXED. make sure that every dose of heroin and etc is as *safe* as possible, that people with children aren't doing it [as in - take the kids AWAY if they have them and do HARD drugs], they don't get gov't assistance EXCEPT to get OFF the drugs if they try to quit. if it's NOT hard drugs - if it's something like, say, POT - treat it like alcohol.
at THAT point, the black market Rx trade would be a LOT less... fraught? yeah, that's the word. i mean, SERIOUSLY, who the FUCK CARES if Joe Blow is faking pain to get drugs he doesn't need, either for rec use or for selling? as long as either A) he isn't hurting anyone ELSE with his rec use, or B) is ONLY selling to adults who are not A, THEN WHY THE FUCK DO WE FUCKING CARE!?!?! i just literally cannot understand this - AND I HATE DRUGS WITH AN UNHOLY BURNING PASSION. i *HATE* that i cannot fucking function without them, and this fact - that i literally cannot get myself off my fucking bed without these fucking meds - is the thing that has driven me CLOSEST to suicide. I FUCKING HATE FUCKING DRUGS - but i have ZERO right to tell OTHERS that they cannot use them, so long as they aren't hurting anyone else.
i. just.
i guarantee that there will be LOTS of chronic pain patients suiciding. i don't want to be one. did i mention i am TERRIFIED?!?!

crossposted to livejournal/dreamwidth, which means it shows up on facebook.

third times the charm?
it keeps messing up right before i am ready to post! grrrrr!!!

sigh

i will, from now, be posting mostly over here (so long as the weirdness stops)
i want to do REAL posting. not quizzes. so, look for those (like, about the girl suspended for two weeks for taking her birth control; or the woman who was arrested and charged and jailed for reporting that she had been raped, because the police DID NOT WANT TO BELIEVE HER, and LITERALLY REFUSED TO DO ANY WORK. so, months later, the guy who had raped her had raped many other women, which is ALL that saved the first woman from years in jail.) because we "live in a post-racial, post-sexist world".
if only.

so, my number1 Girl Crush? is a genius:
http://foreverinhell.blogspot.com/2009/03/horus-worshippers.html#comments

no, really, go look

i have been thinking of starting a blog

i keep not doing it, because i can't even manage to post to this LJ in any sort of regular basis.

also, because "denelian" was taken in Blogspot. did you know that there is a bad in Seattle (i think it's Seattle) named denelian? it appears to have been formed in 2005. and i have been using this name since... 93? somewhere around there. i was tempted for about two seconds to sue. then i got over it, it seems very bitchy, no? and all because i don't want people to think i stole the name. sigh. so, just so you (all) know, Denelian Coronia was the first D&D character i got to 20th level, starting from 1st level. i was 16. she was a thief... i had this little series of short stories, how she was the Royal Smuggler for this smallish-country. because, you see, this smallish-country was a hub for trade, and didn't have ANYTHING that was against the law to sell. but all the other countries did. it was Denelian's job to keep track of what was illegal where, how well smuggling did in different circumstances, train traders in smuggling, etc. what can i say, i started writing it at 15 (when i STARTED the character i was 14. yes, it took me almost 2 years to get her to 20th level. we only played that specific game like once a month at most)

anyway... just babbling

he really did, right after we moved to Ohio, so this was 12 years ago.

Ken Starr is back, pushing to force all the gay couples who got married to CA to be forcebly divorced.

please. please tell Ken to go fuck himself by signing this petition:

http://www.couragecampaign.org/page/s/divorce

i am broke. i could only donate $5. but if everyone donates $5, it adds up.

so, haggard won't admit that he is gay. he insists, over and over, that he is heterosexual with, what, something like gay proclivities? something, anyway, that means he's not really gay, he just looks gay

and his wife is enabling this http://pandagon.net/index.php/site/comments/gayle_haggard_knows_99_of_teds_sexual_experiences_were_with_her/

and, you know, it IS hard when people insist on applying a label to you that isn't true. i have "come out" as STRAIGHT more time than i can count, because people always fucking assume that a confident woman who speaks up MUST be a lesbian. it pisses me off when this happens - not because i have a problem with lesbians, or lesbianism, but because it diminishes women in toto. it means that "real" women (read: hetero only) CANNOT be loud and outspoken and stand up for themselves; it stigmatizes both sides of the hetero/homo line, and it tells me "If you were a REAL woman, you wouldn't act this way" and goes on the assert that lesbians are NOT "real" women because they DO act the way that i do.

it's all fucked up.

and the Haggards of the world just continue the persecution and the hate the false divides and the ignorance. so, no, no pity for them.

a year and a half or so ago, i wrote a short story.

it is actually very dear to me.

anyway, i somehow ran across it on my computer. i haven't thought of it in a while - i wrote it for a contest (Universe magazine, published by Baen). it didn't win (as evidenced by the fact that the enitire world wasn't deafened by my screaming). i am thinking about submitting it regularly, as opposed to for a contest.

but first, i would really like some feedback from someone other than my dad. my dad fell head-over-heels for it - but it's really hard to trust that a parent ACTUALLY likes something, because (at least my parents) they tend to feel obligated to like something.

so i am looking for victi-er, volunteers. (any writers who ever look at my LJ, if you have time, i would be ESPECIALLY grateful for your input). it is just under 5,000 words (and honestly, i don't know if thats too many or too much or anything). i would prefer to NOT try and post it to LJ, for lots of reasons.
also, anyone who DOES read it, yes yes yes the first part IS incredibly important. look, just trust me as a disabled person who deals with constant chronic pain and who had 4 fucking hip surgeries over the summer and so got eight thousand tons of ACCUTE pain on top of it: the FIRST SECTION IS IMPORTANT. i would be open on suggestions to re-write it, but since every person at the Baen's Bar who read it told me to remove the first section (and the reason is apparently not because it is bad, but because talking about pain is bad. which attitude is bad - if we were able to talk about pain more than i think more things would be treated...)i am saying upfront that i would rather never have it published at all than remove the first section. that first section is... well obviously i think it is important. because this is a story about how people are overcoming their disabilities and pain. the discussion of pain, the explanation of pain, the exploration of pain, is right at the center of the story. in a very real sense, without pain there is no story.

anyway. vic-volunteers?

edit for clarification: 5 people at Baen's responded to this short story. every single one of them said something along the lines of "nice story, but the first section is depressing" AND THAT IS ALL. i got no commentary or critiquing other than "first section makes me uncomfortable". this is why i am asking for people to read and respond :)

also... watch the outtakes

Global Gag Rule is GONE!!!!!!!!!

http://news.yahoo.com/s/ap/20090123/ap_on_go_pr_wh/obama_abortion_ban


here is my irony. Pro-lifers are PISSED that their tax money will now be going to fund clinics that might refer abortion, and are SCREAMING that pro-life tax-payers shouldn't be forced to "fund" something they vehemently disagree with. but they had absolutely NO fucking problem forcing pro-choice people into funding ABSTINENCE FUCKING ONLY.

see, this is where the shoe is on the other foot. everytime the nominal left "loses" a battle, such as Prop-8, we are told over and over AND OVER that we need to shut the the majority have spoken. but when we WIN something, like getting rid of that same obscene abstinence only education or the fucking Global Gag Rule - THEN they say it's a "Tyranny of the majority". that THEY shouldn't have to pay for something THEY don't like, BUT WE DO.

i fucking hate hypocrites.