earlier today, in response to an ongoing conversation about the new cdc guidelines on opiates (see here: https://storify.com/AnaMardoll/chronic-pain-disability-and-opioid-access) i wrote this series of tweets:
dear obama administration/fda/cdc - your new rules on opiates hurt chronic pain patients to the point that many of us will die b/c of it.
it was already ridiculously hard to get the medication that keeps me from spending days on the bathroom floor puking b/c of pain
now, i'm out of [med x], can't get new doctors to fill them, can't afford out of pocket visit to old doctor to fill them, so...
i'm losing 2-3 days a week to pain and vomiting. also dropped too much weight since i can't hold down food. 5'7 and 91lbs
is not okay, even for super thin me. please consider the people who need opiates to live & change your rules before we start dying
and then i read http://theferrett.livejournal.com/2050453.html which got a lot of things right, but also failed for me by calling a chronic pain patient who needed opiates an addict. this was my response:
"not bad overall. but... i don't think your uncle was an addict. if he needed the meds to function, if he wasn't getting high but getting relief then he's not an addict.
this may sound harsh, but are you an addict because you need your meds? what about the diabetic on insulin? so from my pov, calling tommy an addict is calling me and every other person with an incurable pain condition an addict. it is wrong, and part of why these bullshit guidelines are now in place - because we're seen as not fully human due to our conditions.
i wrote about how hard it is before these new guidelines earlier today here. https://storify.com/alumiere/the-policy-on-opiates-in-the-usa-is-hurting-people
people are going to be harmed and die because rather than prevention & treatment we prohibit and shame. and if something doesn't change for me soon, i'm likely to be among them. because without opiates i can't hold onto enough food and it's terrifying to watch your body waste away because the cdc thinks chronic pain patients don't deserve treatments that work."
p.s. if you're able to help/share i'd appreciate it; a fundraiser to help pay for my medication and get me through some tough times (i'm offering perks too) https://www.youcaring.com/alumiereandpris