My Turn to Want to Die. Thanks CDC, DEA

Regulated to death. For living in a country that’s known to be free, we are far from it. The disabled who suffer chronic pain are widely discriminated against, regulated to death and made to jump through so many hoops and hinderances making their lives a living hell. I blame our government, the CDC, the DEA and all those who create the hardships, hassles and regulations that keep those of us disabled from truly being free, comfortable, and able to simply live. They must rather we be dead, why else would they seem to go out of their way to make sure we are so miserable and unable to live free?

I had no idea that if you’re on pain meds, you’re not allowed to have a drink, EVER. I’m not a drinker. Rarely do I touch it and haven’t for well over 10 years if not much longer. But I had a celebratory drink yesterday. I was drug tested today at my pain management appointment. I typically only get tested every 4 months but because I failed my last drug test for a substance I have an absolute true allergy to, morphine, they did a retest on me. I figured they would but had no idea that they tested for alcohol and that it could be a problem. I’m glad I asked as I was curious and that’s when I found out pain patients are not allowed to drink. Grown ass adults and we are not allowed to have a drink. FYI, apparently taking Claritin can cause you to fail a drug test for morphine. That’s the only thing we could come up with as I hadn’t had any poppy seed muffins and we definitely know I can’t take morphine. That was my first ever failed drug test and it made me feel like shit even though I didn’t do anything wrong. But now I have the threat of the alcohol showing up for simply having two small glasses yesterday in celebration. SMH.

It’s already bad enough having to go through drug testing both to ‘make sure we’re taking our meds’ and to make sure we aren’t using illegal substances. We treated like criminals. We’re treated like junkies (even though a drug addict may need pain meds too). We’re not allowed to get beyond a 30 day script even in times of national emergencies. We’re at the beck and call of being called in at ANY TIME to drop a urine sample or do a pill count and even if you’re out of state on vacation, if you don’t show up within the 2 hour window, you get dropped as a patient.

When a person lives with a debilitating chronic progressive condition, the only thing we want is some quality of life before we die. Is that really asking too much? Why is that such a problem? It’s pushed me so far in the opposite direction that at this point I rather they decriminalize all drugs and let us simply decide what we want to put into our own bodies. I’m under medicated. We’re capped at a certain MME equivalent to Morphine that is 100% discriminatory to those who need higher doses and/or meds more often. Almost never allowed to increase the dosage as your disease progresses and you continue to decline. Given just enough to take the edge off but not to truly function. Why are opioids the only drugs that cause so much hassle and mental harm to patients when so many need it to function and take it without issues?

Try being a pain patient going to the emergency room. Simply trying to fill your script, especially when you’re med specific due to sensitivities or allergies. I’m tired. I’m frustrated and I’m getting really angry over all of the hoops and treatment all because I have a disease that doctors can’t cure and can’t treat and I’m left with symptom management. How is this ok?! How is it ever ok, let alone ethical, to allow psychiatrists, addiction doctors and other people to sit on a panel and make these medical decisions over our care without a single pain management doctor on the panel to represent the very population these medications are for? I’m angry! This is not a free country. This should not be how we treat our disabled. Where is the compassion?

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Ain’t No Time For That! Mental Spiral

My broken brain decides to choose the absolute worst time to melt down. Is there ever a good time though? When deadlines are looming and paperwork is piling and no one else can take the task seems like a good time as any, right?

So I FINALLY got approved for 3 hours of week home help to help with tasks I’m having difficulty with. Vacuuming, changing my sheets, washing my bathtub, meal prep. Only took several years of asking and a call to my politician to get them to finally sign me up for a service I qualify for. SMH. At least that will take the pressure off a tiny bit. What I really need is an administrative assistant to organize my life and help with the paperwork and keeping on task. Maybe that could be included in my hours, not really quite sure. I know the lady doing my qualifications was shocked with a household of 5 people, I have no one to help me. I have a disabled teen, a 12 year old that does more than anyone else, a husband that works more than 6 days a week and runs ragged on his hours off and a mother that spends her time hiding in the basement and really only comes out to ask what’s for dinner. I’m broken.

And now as deadlines are looming and my teen is transitioning to adulthood and piles of paperwork come in for his disability, ssi, home supports, services, VA dependency, health insurance dependency, and suddenly my daughter wanting to homeschool and the loads of work involved with that, not to mention the stacks of all the other tasks undone, waiting for completion or even simply looked at and the pile grows and grows and grows. I’m drowning. No time to spiral! No time to check out and take care of myself. No help. Just simply, ain’t no time for that….