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Comedy of errors Living with pain

On painkillers

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I was in a group online a couple of days ago where the general topic of painkillers came up. People were discussing the difficulties of NSAIDs and Tylenol in a general way, when the stronger opinions started coming out.

These opinions were not coming out of nowhere. I was with a very educated group of people and I respected the opinions of everyone one. But some started making blanket statements, “No one should ever take Tylenol, take NSAIDs no matter if it gives you a tummy ache.” “No, NSAIDs are too dangerous across the board.”

And, suddenly, I felt judged. (Although I know these folks were never judging me.) For the record, I cannot take NSAIDs because of an esophageal problem and take high-dose Tylenol three times a day to help control the pain. It felt like they were saying I was doing wrong. Even worse, I was in a damned-if-you-do and damned-if-you-don’t situation.

It was largely because of the absolutes in their speech that I felt cornered. Had someone led with “each case is different, but” I would have felt much more included. And much less judged.

Because pain is so universal, many folks become an expert in it. And most of us normalize our own type of pain, making judgements around our own lens. I hope I am not doing that here in this blog. Do know that when I write from personal experience, that’s all it is, personal experience. Your migraines or lower back pain differ greatly from my fibro and arthritis.

I need to check my own language to avoid the universalizing that others did, which bothered me so much.

We need to share experiences or ideas with each other. Doctors only talk about pain through a limited lens that circles around the medications they prescribe most. Today there is also a narrative about keeping people off of opioids. My doctor is very concerned about keeping me off the stronger opioids as long as possible. This makes sense in a world where some many people start with chronic pain and end up addicted to OxyContin.

We need these shared ideas because so they lock away many findings inside of incomprehensible medical journals and have only brief contact with those writing and researching in other fields. Whether those fields be toxicology and environmental health or herbalism and Chinese medicine. Few doctors are going to bring up cupping, even if it provides sizeable pain relief. We cannot yet study what truly causes that pain relief.

It leaves all of us sorting through a pile of anecdotes that we often pick from based on what we already know or feel to be right. And this sort of confirmation bias is a poor judge of truth or use.

Still, I am now a little more scared of my Tylenol than before. (And my liver already scared me.) How long is my liver going to last? Nobody can tell me that.

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My drugs have drugs

One of my drugs went bad. It was a new drug that worked great for a couple of weeks and then turned on me and had me seeing things and hearing voices. Those are not side effects I can live with.

I am so tired of all this. I am on maybe 15 drugs for a mix of physical and mental conditions. Some drugs I take because other drugs have caused problems. I have to treat my drugs. Other drugs I have been on forever. And have a handful of prescriptions laying over top of them, without any examination of whether to remove the old drugs.

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Last night, I told my husband that I would no longer take half of the drugs. He got very upset and talked me back into taking them. (It is the psych meds – I have treatment resistant depression and PTSD).

I don’t know where to go from here. I can talk with my doctors – again. I cannot really get a second opinion because insurance won’t pay for that at this stage of the game. Do I just plan on staying on these pills forever? They all have side effects I would rather not live with – dizziness and mental confusion are the worst. But I also refuse to be the psych patient who goes off drugs and does something bad.

Does anyone reading this have experience with reevaluating pills that they have been on for an extended time? (My longest is 20+ years). Please comment below and let me know. I am really asking for answers here.

Now I am dizzy, cognitively impared. It feels kinda drunk. But without the happy parts. And I am trying to write – fearful that my words come out sounding like a 4th grader. I will be back when I figure out something else to say.