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What is Success?

(cw: opioid forced taper, chronic pain)

I'm a writer/poet and I mentioned to my therapist (for medical PTSD) that I wanted to practice doing spoken word poetry but was having a hard time coming up with a topic. She recommended I write what's been bothering me the most in healthcare right now. The following snarkiness is what flowed out. I don't intend to ever use this for anything other than practice but, being the perfectionist that I am, I thought I'd share it here to get some feedback. Anything else I should add? TIA

...

Dear doctors,

I must refuse your
(rather smugly satisfied)
congratulations for
"getting off opiates"
since this decision
was made without me.

Rather, this course of (non)treatment
was built upon
political maneuvers
scapegoating
pain patients
in 10-second sound bites
on the evening news
(because adding "illicit-" to "opioid epidemic" is just too long).

Guidelines misapplied
and revoked
still have life
when bolstered by
misunderstood
and misapplied science
(and a few outright lies);
then fulfilled by
frightened doctors
trying to help patients
without blowing up
their healthcare careers
in a political minefield.

What success is it that you see?

Stealing my pain relief
was successful
in a noticable increase
in number of days spent
unable to get out of bed
and number of nights spent
staring at the ceiling
hoping I'll die before I awaken
to another day
in
this
much
pain.

It's been successful
in making my loved ones
victims of angry outbursts
and cancelled plans.

It's excelled
in rapidly increasing
• sleepless nights (check)
• brain fog (check)
• memory loss (check)

It has successfully
morphed my life
from sort of OK
to more difficult than liveable
with frequent moments of impossible.

And it has had
wildly successful gains
(if you're talking about weight).

If the true measure of achievement
is counted in teardrops
then I really am
the pinnacle of success.

...

#MightyPoets #PTSD #MedicalPtsd #Opiods #OpioidStigma #Opiodsforchronicpain #Dontpunishpain

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Pain Flare: How do I get control of the pain?

My pain has been steadily climbing this past week. Around 1pm each day it starts ramping up & by 6pm I have exhausted all my options & am bawling as I writhe around, trying to find a less painful position. I can't talk to my doctor until next week. I really don't want to go to the hospital, but the receptionist encouraged it. I will likely be accused of "drug seeking behaviour" because I am on opioids. The breakthrough pain meds I have, I can only take for 5 days at a time & they make me sick. My heating pad is a godsend as are blankets & pillows. If anyone has any advice on how to get the pain under control, I would really appreciate it! I don't remember what I did before. I don't remember it lasting this long.

#Pain #PainScale #ChronicPain #Opiods #Fibromyaliga #MajorDepression #IrritableBowelSyndromeIBS #CPTSD #ChronicIllness #Narcotics

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The struggle is real!🤣 #CheckInWithMe #ChronicPain #Opiods

CARTOON
A Day in the Life of a PWD

A woman in a power wheelchair, holding a bottle of pills: "Alright, decision time! Pain relief...or bowel movement?"

3 comments
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Pain control #Pain #PainMedication #PainKillers #Opiods

I am so tired of being in pain.

These past 2 weeks have been the worst I’ve had in a while. My mother keeps begging me to go to the hospital for some relief, but honestly I’m too afraid to go. I’m afraid that they’re going to label me a drug seeker and push me aside.
Damn this “opioid crisis”! I’m so angry at what it’s doing to people like me who really need pain control.

2 reactions 5 comments
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is anyone familiar with ketamine infusions for chronic pain? #RheumatoidArthritis Fibromyalgia #severepain #Opiods

today after a 5 month wait was my pain clinic evaluation- I was told NYS will not give opioids to Chronic Pain patients - only Cancer, surgery, and terminally ill-
I am devastated- without writing a novel- my pain is so bad I don’t know how much longer I can go on- especially after 28 yrs of this and being told to try a Tens unit??? I need legit help with pain control or I’m going to actually start vomitting from pain rather than gagging- teeth chattering etc- I feel defeated.

11 comments
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Going through withdrawal. #

I'm currently getting off of opiods and in acute withdrawal. Anyone have any tips or tricks to make this easier? I am so happy to be off of them I just need to get through this! ❤ #withdrawal #Withdrawing #Opiods #Opiodsforchronicpain #Narcotics #fentanyl #embeda #morphine #Fibromyalgia #Pain

8 comments
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More Than Just A Headache, It's Migraine!

The first time I experienced a migraine, I didn't know that's what it was. It began with a dry feeling in my left eye and a warmness on the same side of my face. This strange feeling woke me up earlier then usual. Maybe I was getting a cold or the flu, I thought since it was winter. My nose wasn't stuffy, and my temperature was normal. I took two ibuprofen, but I seemed to be getting worse. I took two more. No relief, only more pain! I went ahead and took some cough medicine and rubbed my chest with Vicks just in case. My eye kept hurting. It started to feel hard to me as if it was swollen. I told my husband that my eye was painful. The pain in my face, but only on the left side, spread to my forehead and jaw. The throbbing began and it wouldn't quit. I was thinking of going to the emergency room because the pain was horrible. I couldn't stop crying and I threw up. My husband closed the curtains since the light was making the pain even worse. I felt like begging the doctor to rip out my eye to end the pain. Cold wash cloths, ice packs, even a cold shower didn't relieve the pain. I remembered that I had a bottle of leftover pain medication from my hysterectomy months before. The surgeon had given me refills if I needed them. I was worried about taking the pills because I had taken so much ibuprofen that morning. Three hours went by. I laid in the dark bedroom, suffering from pain so bad that I said it was worse than giving birth or getting an operation. I felt like I was going insane from a HEADACHE! I had to rationalize with myself to take the hydrocodone. What if I became an addict? The label said one to two pills as needed every four hours. I did need them! Before I swallowed two, I said I'd rather die from an overdose than feel anymore pain. The pills dulled my head pain but not my eye pain. I began to be calm and could lie still under my electric blanket with the ice pack on my head. The pain seemed lighter. I stayed in bed until midnight when it returned. Two more hydrocodone, back in bed with nothing to eat that day. I was able to drink warm tea at dawn. The sun was coming up and I still had pain in my eye, although it was getting less. I remained in bed another day until the pain turned into an ache. Ibuprofen kept the ache away until I was able to see my eye doctor. You had a migraine, he said, and sent me home with a brochure about headaches. Diagnosing migraine is not uncommon for eye doctors. I used to hear people talk about migraine, but I really didn't feel any sympathy. It's just a headache, after all! They must be drama queens or a hypochondriac. Now I understand what it's like to have migraine. I'm not ashamed to use the word suffering. I research about treatment and how to cope. There isn't one thing that triggers a migraine for me that I can identify. It just happens. A dull pain in my eye has been hanging around for almost a weak and I am praying it doesn't turn worse. #Migraine #Headache #eyepain #suffering #Opiods #Pain

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