Joanna (@castlesburning) header
Joanna (@castlesburning) profile picture

Reader, writer, animal advocate, living w/ #lupus, #polymyositis & #fibromyalgia

Connecticut
Joined November 2008
Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)Photo by Joanna (@castlesburning)
#Dazzle4Rare For nearly 20 years, I have lived with a rare muscle disease called #polymyositis - most people haven't even heard of it. Please take a moment to learn a little and share!
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Pulling into my parking spot, I happened to catch this gorgeous little guy against this equally gorgeous backdrop... #autumn #nature
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Joanna retweeted
Caring too much about the opinions of random strangers is a fantastic way to become insane.
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There are hundreds of millions of people all over the world who log on to social media every day looking for things to be offended by.
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Imagine if REAL victims got as much sympathy as 'misunderstood' criminals.
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I'm mysterious in a "how is she still alive" sort of way
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I'm rubbing ointments you've never even heard of into aches you can't even comprehend
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Understanding most people are speaking to their past self allows you to walk through the world in peace.
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I protect my peace more fiercely since becoming chronically ill. I have limited energy and I try to spend it wisely.
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Not going because I’m tired of spending one-and-a-half hours of my day to be seen for 10 minutes to be told to go see 3 other doctors who can’t be seen until 3 months out and then will take one-and-a-half hours of my day to be seen 10 minutes to tell me to take more tests and medicine I don’t need because they actually don’t want to keep me healthy.
I’m not sure that’s why we quit.
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Here is the part of the opioid debate that still makes absolutely ZERO sense to me: Why are chronic pain patients being made to atone for an addiction crisis we did not create? I have empathy for people who suffer from addiction. I mean that. I’ve written about it. Addiction destroys lives. Families lose people they love. That grief is real, and those people deserve compassion. But two things can be true at the same time. Having compassion for addiction does not require sacrificing people in pain. A chronic pain patient who has been evaluated by a physician, diagnosed, monitored, counseled about risks and benefits, and prescribed a full-agonist opioid as part of an individualized treatment plan is not morally interchangeable with somebody consuming an unknown street supply. Dependence is not addiction. Tolerance is not addiction. And pain relief is not addiction. Ask someone with relentless, intractable pain what two hours of reduced pain can mean. It may mean taking a shower. Making breakfast for their children. Driving to a doctor’s appointment. Working long enough to keep a roof over their family’s head. Going to the grocery store. Sleeping. Laughing. Participating in their own damn life. A full-agonist opioid doesn’t make our pain disappear. It simply turns the volume down enough for a human being to come back into the room. And THAT is the part the anti-opioid absolutists never seem to understand. If someone you loved was harmed by opioids, I genuinely have compassion for what happened to your family. But your grief does not give you ownership over another patient’s body. Your experience does not give you veto power over another person’s medical treatment. And your fear of a medication does not mean another human being should be forced to live at an 8, 9 or 10 on the pain scale because eliminating every opioid from medicine makes you feel safer. Because here’s what never seems to get discussed: You don’t pay the price of untreated pain. You don’t lie awake inside that person’s body. You don’t lose their career. You don’t miss their child’s dinner. You don’t calculate whether standing at a pharmacy counter for ten minutes is going to destroy the rest of the day. 🫵🏼 don’t live the consequences. We do. We call America a free country. Then competent adults, together with licensed clinicians who actually know their diagnoses, histories, risks and responses to treatment, should be allowed to make individualized medical decisions without every politician, pharmacist, insurance company, bureaucrat and stranger on 𝕏 inserting themselves into the examination room. Yes, opioids carry risks. So does untreated pain. Both truths belong in the room. Opioids have been used for pain for centuries. Their risks should be respected, monitored and discussed honestly. But somewhere along the way, “use these medications carefully” mutated into “anybody who needs these medications should be viewed with suspicion.” And chronic pain patients have paid for that transformation with pieces of their lives. So I’ll ask the question plainly: 🗣️If a carefully prescribed and monitored medication gives a person living with catastrophic pain two hours of their humanity back, who the hell are you to tell them those two hours aren’t worth having? We can fight addiction without abandoning pain patients. We can prevent overdose without criminalizing relief. We can have compassion for people with addiction and compassion for people whose bodies hurt every minute of every day. Those ideas are not enemies. And that should never have become a radical position!
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Things that regulate your nervous system: 1. a warm bath 2. thick, cozy blankets 3. listening to birds 4. re-telling stories 5. happy hour with coworkers 6. volunteering or helping someone else 7. hyper fixation on a new interest 8. laughing at yourself
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Saying "no" is one of the biggest forms of self respect.
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Having a family where minor disagreements don't become explosive blow ups, is one of the biggest accomplishments no one notices.
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