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Highly recommend the Netflix documentary Take Care of Maya about a young woman w/ CRPS and the aftermath of her medical "care":

Chronic Regional Pain Syndrome aka CRPS is yet another poorly understood, pernicious illness that disproportionately impacts women and girls. In this case, it led to an utter fucking nightmare for both the patient, Maya, and her family. The film expertly depicts the hell that results when physicians don't believe the patient and wrongfully dismiss debilitating physical symptoms.

It might hit too close to home, so proceed accordingly.

I've been too ill to write here for the past two weeks--the symptoms from the M.E., cancer, and heart attack are currently wreaking utter havoc w/in my body. So maybe it was an odd choice to watch Take Care of Maya tonight. On the other hand, I believe information is power and that it's valuable to keep learning how and why a medical system that's ethically and legally obligated to help instead too often harms so many of us:

www.youtube.com/watch

Day 45 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ThyroidCancer #Cancer #CRPS #chronicregionalpainsyndrome #ChronicIllness #HeartAttack

Take Care of Maya | Official Trailer | Netflix

When 10-year-old Maya Kowalski was admitted to Johns Hopkins All Children’s Hospital in 2016, nothing could have prepared her or her family for what they wer...
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Happy 2024, all! Hope you're feeling as well as possible! Here's an interview I just did w/ the M.E. podcast Post-Exertional Mayonnaise (get it?)

Daniel Moore is a British musician who had Myalgic Encephalomyelitis as a child, seeming got better, and then experienced a return of the illness in 2018.

In 2023, he co-founded the M.E. podcast Post-Exertional Mayonnaise to discuss M.E., music, writing, grief, and whatever other topics might pop up.

He's a good, smart person and I appreciated his questions.

On my living w/ M.E. for 32+ years, thyroid cancer for seven, the small heart attack, my first book Altitude Sickness about my best friend's death from mountain climbing, and my upcoming book Fire in the Hole: A Eulogy for the Living on the massive catastrophe of M.E.

On YouTube:

www.youtube.com/watch

And on Spotify (it's available wherever you get your podcasts):

open.spotify.com/episode/7x8qVAJhNjKmddhXnUY5J9

It's hard to be human and it's vastly harder to be a sick and/or disabled human, so I hope your new year is off to the best possible start and that the world is treating you w/ the kindness you deserve. All the best. xo

Day 18 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #pwme #ChronicIllness #ThyroidCancer #Cancer #HeartAttack #Writing #Music #Disability

Litsa Dremousis: Author, Essayist and Activist on writing and life with ME

Listen to this episode from Post-Exertional Mayonnaise on Spotify. Daniel is joined by Litsa and her dog Jordan (who she describes as an inveterate cuddler and the primary reason she's alive). Litsa shares from her 30 year history of life with ME and we explore how she's navigated a writing career: interviewing famous music artists, publishing her own deeply personal stories, and raising awareness of the reality of ME at the highest levels. Millions missing episode: https://open.spotify.com/episode/1adUN7Qd0Quli2KEGbrvTx?si=EvhKekMJShyWkSD39RFzXw https://litsadremousis.com/ Susan Sontag (illness as metaphor) info: Illness as Metaphor https://g.co/kgs/JFg1yh Get in touch: pempodcast23@gmail.com https://www.pempod.com/
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Who am I and what am I doing here? My new daily blog on Myalgic Encephalomyelitis:

Hello, all! Hope you're doing as well as possible navigating the holiday miasma in an uncooperative body.

Earlier in the week, I began writing an M.E. blog here. Fingers crossed, it'll be daily.

I've had M.E. for 32+ years, thyroid cancer for seven years (the thyroidectomy and radiation didn't get rid of the cancer, but they did cause myriad ongoing complications), and a little over a year ago, I had a small heart attack. (This isn't as random as it sounds: research has shown that persons w/ M.E. have increased rates of cancer and of heart complications.)

I'm a longtime writer who's written each word from bed (please see my bio below), lifelong Seattleite, and guardian to my dog Jordan, who's a beacon of all that's good and true.

My health continues to decline--lately at a quickening rate--and I want to write about M.E. in real time here and, also, meet some other salient humans fighting many of the same battles.

All the best to each of you,

Litsa

Day 5 of 365

Litsa Dremousis is the author of Altitude Sickness (Future Tense Books). Seattle Metropolitan Magazine named it one of the all-time "20 Books Every Seattleite Must Read". Her essay "After the Fire" was selected as one of the "Most Notable Essays 2011” by Best American Essays, and The Seattle Weekly named her one of "50 Women Who Rock Seattle". She is an essayist with The Washington Post.

Her work also appears in The Believer, BlackBook, Esquire, Jezebel, McSweeney's, Monkeybicycle, MSN, New York Magazine, Nylon, The Onion's A.V. Club, Paste, PEN Center USA, Poets & Writers, Publishers Weekly, The Rumpus, Salon, Spartan Lit, The Weeklings, in several anthologies, and on NPR, KUOW, and additional outlets. litsadremousis.com, @LitsaDremousis.

#MyalgicEncephalomyelitis #pwme #cfsisamisnomer #ThyroidCancer #Cancer #HeartAttack #ChronicFatigueSyndrome #ChronicIllness

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Life is full of irony!

Today marks the first anniversary of the death of my brother. It is also my dog's 2nd birthday. I miss my brother yet I am so happy my dog Hans came into my life. When my brother first passed, I was in such denial that I didn't even shed a tear for several months. I actually didn't believe that he was actually dead. I still doubt sometimes even though I saw him, touched him, read the death certificate and the entire autopsy report. I suppose my mind is trying to protect me. Every time I feel sad because my brother is gone or feel bad because I wasn't able to mourn as I thought I should, Hans does something goofy. His personality actually reminds me of my brother. He's a constant reminder to me that life does go on and even though I've lost a lot, there are many reasons to keep going. Today I resolve that I will do my best to focus my attention on good while still acknowledging my losses. I believe that it can be accomplished. If I am going to give more power to one emotion over the other. Happiness should be more powerful than sadness. I pray that I am able to remember that. #generalanxietydisorder, #Depression , #ChronicMigraineSyndrome , #OccipitalNeuralgia , #Fibromyalgia , #Gastroparesis , #Diabeticpolyneuropathy , #PrinzmetalsAngina ,#Asthma ,#HeartAttack , #diplopia

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Womens Heart Attack#HeartAttack

Could a woman that's had a Heart attack tell me what it felt like? I am not going a&e because of several horrific experiences unless I'm sure. I have heart desease but never Heart Attack. #HeartAttack

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I screwed up again 🙃

It's difficult to see who is friend and who is trying to scam you.
This is an apology to the person that I wrongfully assumed was trying to scam me.
I'm sorry, I really, really am. I jumped to the wrong conclusions about your intentions, and I hope you can forgive me for this.
On my behalf though, I get so many messages from people with bad intentions that I wrongfully assumed yours were.
I'm sorry 😞 and hope you forgive me.
#MentalHealth
#BipolarDepression
#PanicDisorder
#AtrialFibrillationAndStroke
#HeartAttack
#Guilt
#SuicidalIdeation
#ChildhoodAbuse
#CPTSD
#ChildhoodSexualAbuse
#abandonment
#ChronicPain
#AndSoOn

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So shocked.

My uncle just had a serious heart attack & I don't know what to think. Other than the hugely annoying fact that he's over 300 miles away. It would take me 5hrs to get there by train.
I'm completely knackered if I've been on the train 15 minutes, so he might as well be on a different planet to me. Ugh.
#Disability #ChronicIllness #heart #HeartAttack

2 comments