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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I didn't think to call or speak with her or her NPs about the concern regarding remaining benzos. I knew of the dangers, I was palliative so didn't care about the dangers of withdrawal per se, but the forced withdrawal damage when no one seemed to know safe tapering methods (AZ).
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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.
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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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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."
Jan 25, 2023 · 7:16 AM UTC
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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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