The unfolding story however, is a testament of the hell we #prescribedharm folks are often duped into because of trust or faith in organized greed, burnout, misinformation and outright lies and manipulations.
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I'm educated as well as having had hard life experiences - school and books and "unladylike" questions. I began to read about the concerns in #prescribedharm a few years ago and after nearly 40 years of daily benzos and use of other psych meds I was off of, made a decision.
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I was already diagnosed with mortal illness and was not supposed to survive and have done so from the thought I'd not see out a week to this week, as I turn 60. I was given valium at 21 when I self reported feeling strange and kept feeling worse, and I just would not shut up.
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I have no proof that tho this was the era of Mother's Little Helper that they thought to medicate some supposed DSM diagnosis or shut my mouth (didn't work at all lol). Up and up that dose went, even as I got medically sicker - and medicals outside psych often show up in behavior
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From valium to ativan then onto clonazepam, I was dosed for nearly 4 decades believing it was compliance with the help I needed to live with some quality of life. And I did, I got through voc rehab and back into the world and loved it til 2013 my bone marrow failed, down I went.
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Everything that happened from that day forward was a trauma for me, family = I lost my work, many of my friends, my beloved husband and my mother. Not to mention my own health and life. But take me off of psych meds? Not a chance, it could harm me worse.
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I began to realize I was very overmedicated with a lot of things that were causing me to worsen and bring my death closer. I was on things I should have never been but I was alone and scared, so we do what we do thinking it's what is right. A brilliant hematologist saw it first.
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Under her care I went from 30+ medications of all types down to two stem cell stimulants, EPO (Lance Armstrong's drug) and Filgrastim. I was on Prozac, pain meds, benzos, got of both of the first. A year later my blood counts while not good were stable especially from fluoxetine!
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She recommended reduction of the final benzo as I was no longer able to take the stem cell stimulants due to FDA (in this case they probably weren't wrong) so all that was left was out of her specialty. She is still my hematologist, but since a PCP can handle treatments, 4x p/yr.
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At the last clinic on the list I tried, about to give up, I went in anyway. The model was a DNP MAT and therapy with a 6 month taper. Smart, articulate, arrogant, young, I thought this is the last one, I'll try and see what happens. She asked for urinalysis to which I said sure.
Jan 25, 2023 · 7:16 AM UTC
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Mid day the day after phone rings and it's the MAT who says "there is no benzo in your test, I think you are drug seeking and I hesitate to see you again. " I was horrified and started to research. Happens in healthy folks as well as palliative patients. I was using 1/2 mg.
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I was really upset and felt dehumanized, criminalized, not at all supported but said I'd come in again for any test she wanted. She said no it was ok, she would see me next week. From that point the ridiculous became not at all sublime. Accusations despite video and recordings.
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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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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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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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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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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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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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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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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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