Lelena Profile picture
Human Being. pain patient, chronic illness, healthcare EDS/Arachnoiditis.
3 subscribers
Nov 13, 2021 β€’ 11 tweets β€’ 11 min read
I'd like to explain why #PainPatients & the #disability community is having a VERY difficult time w/this suite of articles about #ChronicPain.
I did find a more balanced view in some of the articles, & that's a good start for journos covering #ChronicPain. Sadly, it isn't enough. For the past 7 years, #PainPatients have endured the draconian shift in #healthcare & attitudes toward pain & disability.

Countless patients lost their meds.
Many patients lost their doctors.
Some patients lost their jobs, their spouses, even their children.

Some of us died.πŸ₯Ί
May 15, 2021 β€’ 4 tweets β€’ 3 min read
Today I wish to honor @kathleenaie.
She was a Wife
A Mother
A Dear Friend, &
A Fierce Advocate for #PainPatients.

Kathleen passed away suddenly. She was & will always remain a force for good. She fought tirelessly for others.

We will miss her SO much. Thank you, Kathleen!πŸŒΈπŸ’š She was ever-present & vocal about the issues #PainPatients face in medicine today.

Her mission in life was to help others in any way she could.

I believe her poor little body couldn't keep up with her heart & her passionate pursuit of restoring rights & medication for #CPP.
Apr 18, 2021 β€’ 4 tweets β€’ 3 min read
We need change NOW. How is it that at no point during the encounters with this poor woman NO ONE seemed to notice she had mental deficits? A visit from APS would be more appropriate. This woman was terrorized by the police, not *policed*. #PoliceBrutality
nbcnews.com/news/us-news/c… This is indefensible.

Miss Garner is 73.
She has dementia & aphasia.
She was failed at every turn.
Walmart employees wouldn't let her pay for the items she *stole*.
The cops used UNNECESSARY FORCE w/someone who couldn't comprehend them. How did everyone miss her #dementia?πŸ€”πŸ’”
Apr 17, 2021 β€’ 8 tweets β€’ 5 min read
Well folks...this is making the rounds thanks to the eagle eyes of @yahoocyd! (Thanks, Cyd!)

You read that right. 12 Steps For The Chronic Pain Patient.

Naturally, I have a few thoughts...

My initial reaction was disbelief, then utter dismay. Really?πŸ˜”
chronicpainanonymous.org Firstly...
The whole thing smacks of the pulpit, but let's dig in, shall we?

We are powerless over pain. Uhm...NO. Not at all.
That's what medicine, treatments, & coping mechanisms are for. Helping manage pain to a more tolerable level so one can be more productive & joyful.πŸ€”πŸ€·β€β™€οΈ
Mar 18, 2020 β€’ 10 tweets β€’ 6 min read
Dr. Kertesz addresses the doctors who believe no one should be started on #opioids in this tweet. I'd like to chime in as well.

I believe it should be a carefully thought out decision between doctor & patient. I'm a patient that benefits from #LongTermOpioidTherapy. A few notes: I finally got a diagnosis that isn't half-assed. I have #EhlersDanlosSyndrome, among other things. It's extremely painful. It started to set in during college. I should have know that wearing a backpack shouldn't have been excruciating. It was. I didn't go on an #opioid regimen
Jan 30, 2020 β€’ 16 tweets β€’ 14 min read
I have a grievance regarding my mom's care during her bout w/#sepsis. #dementia

At the end of October 2019, my husband & I awoke to find mom's breathing labored, & her mumbling to let her sleep. We let her rest. A fever spiked within the hour, & suddenly she became deathly ill. She was twitching, sweating profusely, in full rigors, & unable to sit up/speak well. She looked TERRIFIED. I thought she had a stroke. Turns out, it was a high fever from an infected gallbladder. She landed in the #ICU. ALL her vitals were jumping around. It was horrible.
Oct 3, 2019 β€’ 6 tweets β€’ 7 min read
My name is Dawn Anderson, & today I should be celebrating my 54th brithday.

I was a grandmother, mother, aunt, & dear friend.

I was also a #ChronicPain patient.

I used #opioid medication to maintain a decent #QualityOfLife.

I was forcibly tapered from my pain meds in 2016. I found other patients who were suffering because of the #WarOnDrugs, & I cried out for help.

I shared my story with journalists.

I wrote my PCP a letter.

I attended a #DPPRally with my daughter @AmandaLatronica. I'm so proud of her. She's a #warrior!

painnewsnetwork.org/stories/2019/3…
Sep 20, 2019 β€’ 15 tweets β€’ 7 min read
It's time to do another one of my dumb threads, so here goes:

I'm SO GLAD life is so simplistic for you. Guess where I was this morning? At the #PainClinic with my elderly mother who suffers from #dementia. She had an early AM appointment, which is unusual for her. Mom is more confused earlier in the day. She often has trouble getting to sleep because of pain & the dementia. We had to plan carefully, bathing her, & laying out clothing yesterday. Despite this, mom changed back into her nightgown 3 times, then finally put the gown on OVER her
Jan 21, 2019 β€’ 5 tweets β€’ 2 min read
Hi! To make a thread...

Simply send a tweet to start the process.

Then, find your tweet in your profile and REPLY TO YOUR OWN TWEET to add the second tweet. This is me replying to my own tweet. Now I have a thread going.

This way, my tweets are now linked. This proves really helpful for me because I have a tendency to blather on, and sometimes I have a LOT TO SAY.

To continue my thread, I will reply to THIS tweet next!
Nov 3, 2018 β€’ 5 tweets β€’ 51 min read
Nov 2, 2018 β€’ 5 tweets β€’ 6 min read
My name is Lelena.

I am a #ChronicPain patient.

I am required to pee in a cup monthly to show #compliance to my #LowDose #opioid regimen.

I am painted as despicable, helpless, & #unclean by the powers that be.

I am a modern-day #Leper.

#EndStigma #PainLeper Newsflash, America:

I'm not JUST a #ChronicPain patient.

I am not helpless.

I am not #unclean.

I am not #despicable.

I don't just use #pills to overcome my #SeverePain.

I refuse all #stigma, misconceptions, assumptions, and #labels.

I am an #Overcomer.
Sep 9, 2018 β€’ 4 tweets β€’ 2 min read
@Shasta77777 Hi Shasta! 🐹🐹🐹 @Shasta77777 I thought I would send you animals. 🐹🐹🐹🐢🐢🐢
Sep 9, 2018 β€’ 6 tweets β€’ 8 min read
@StanfordPain @BethDarnall @nature The following is an VERY important thread by @Shasta77777 who is pointing out valid fears and concerns about taking #biopsychosocial medicine too far and using it as a blunt weapon to remove analgesia from patients with #chronic #degenerative disease. PLEASE...hear us. Thread by Shasta Rayne @StanfordPain @BethDarnall @nature @Shasta77777 2/ Thread by @Shasta777