It is the true teacher who leaves the class knowing they have learned the most.
Tucson, AZ
Joined September 2006
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Good response from Joe about my search for palliative care and what that meant to individuals. It's often confused with hospice or considered the same thing and it is been marginalized barely required for residents to do anywhere in the world. So a lot of confusion and complexity
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I am less sorry to have been in pain and sick than I am for putting up with idiots because we're taught to believe them.
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People are different and so are those meds. I never felt weird or inebriated from a benzo at all, but they used gabapentin and methocarbomal, opiods too. Yeah I fell down a lot. It happens when patients have low blood oxygen too.
Yes, that's why people are dying because long term benzos at high diagnosis are deadly to stop in some patients. I'm on one now but not daily and I stopped, not the "TEAM" (there was no team, just practicers who wanted to take credit for what took me a lifetime to do).
It took over 50 years for me and the vast majority of the awful stuff is in fact iatrogenic, left me without savings, and that's just my story, my family oh goodness gracious. *hugs*
In palliative care of the most modern kind, you could decide you didn't want to take it at all or ask for a different dosage. It's what brings comfort and quality to your life, not a doctor know it all telling you what's right for you.
Have you talked with a palliative care specialist at all? They are very hard to find and reach very few people at this time. Your condition and situation qualify. It's about your decisions, not the doctors on quality of life for YOU to decide,
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That's a very good point and there is actually some data going on and some work on that but not quite what you're talking about I think it definitely has a lot to do with where when and how you might have heard those terms used if at all. You must be a scientist ;-)
Yeah it's a pretty shitty time when you have to teach your own doctors medicine they don't believe you know a thing about because my God how can a patient possibly have been educated or more educated than them they must be using Google obsessionally so much it belongs in the DSM.
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That we embrace the binary model so much is disconcerting. My way is right your way is wrong. The opposite of hate is love and we don't look beyond. This is considered black and white thinking , often part of the so-called diagnostic measure of mental illness. Now that is funny.
I believe the #prescribedharm movement is going to get bigger, as the psychiatric and physical damage done by immunotherapies and unnecessary pain meds etc are measurable and consistent over decades. Maybe it will help someone. Forever with you, for finding quality of life. xo/m
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Am I proud of myself? I don't even know, it was such suffering without support - and even such demeaning, dehumanizing accusations all false. It's a different outcome but for ME alone I feel was right. I sleep, eat, and I feel autonomy and nobody's victim. Thank you for reading.
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Nearly 40 years of benzos, I was free but I was really sick. After two weeks of evaluation, refusing pain meds at this time, they decided a low dose non-daily benzo was the best tolerated and least destructive since I'd be at home monitored for falls. And so now here I am.
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My intake was finished, the managing nurse visited after the weekend "Well do you want medication for the last days 'til they figure out your plan?" I told her frankly I just didn't care. SHe pressured me. "You are the clinician, do what you want. I truly don't care."
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I asked her if she'd been informed I was no longer her patient and this appointment was to sign off on her and get the hell away? What TEAM did this by the way? They did shit, I did the suffering, not them, not at all. They all went silent and then she asked when I began care.
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A couple of Friday mornings ago, I was to see her via last telehealth appointment to tell her I'd called Arizona Oncology and within minutes was fully covered for palliative care. No one informed her I guess, she starts the conversation : WHAT A GREAT TEAM! WE ARE A WEEK AWAY!
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We had two more telehealth sessions, the first one in which I went into a rage she'd never seen before but plenty of my pals have seen alrighty. It's frustration and a sense of being a victim. THe holidays she gave my now tiny dose of clonazepam and things got even worse.
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By the fifth month I was miserable, not sleeping more than 30 minute catnaps here and there. Not insomnia, no anxiety but stress from this mess. No depression, just exhaustion (pancytopenia is exhausting FYI) but she insisted I not nap and use sleep hygiene. CBT. Getting worse.
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