i have been damned
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.
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.