NomadicLibrarian

365 posts

NomadicLibrarian

NomadicLibrarian

@NomadicLMS

Librarian, traveler, book reviewer, Irish/American nomad, romance fan. Mother of 2, teacher/librarian to 1000s.

Pasadena, CA Katılım Eylül 2015
136 Takip Edilen55 Takipçiler
NomadicLibrarian
NomadicLibrarian@NomadicLMS·
@endthehiding @BostonGlobe Your overlord Stephen Miller must be so proud of you, one of his white supremacist protégés. Pathetic excuse for a human being! So I guess you’ll be first in line to take one of their job…or is it beneath you?
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
@1goodtern This is the reason I can no longer work in schools. I’d have to remove my mask to eat which isn’t an option. That and the fact that 2-way masking is the most effective prevention, but that went the way of the dinosaurs.
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tern@1goodtern·
I had a very sad conversation this week. A young school receptionist who caught Covid at work, developed Long Covid, returned to work, caught it again and became even more ill... and then again... She said I could share her story. It's about masking...
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
@NeurologistMom I have a 26 yo daughter with severe to very severe ME as well as POTS, MCAS, EDS, and probable gastroparesis thanks to a Covid infection in Jan. 2020. I’m happy to support what you’re doing. When you’re ready, let me know how I can help. Thanks.
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Neurologist Mom
Neurologist Mom@NeurologistMom·
I don’t have much energy or time lately, but I feel a strong urge that as parents of children with severe ME and LC, we need to create some kind of group and legal support system to protect our rights and stand against the harassment we face in healthcare settings.
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
@MEActNOW @NeurologistMom Would you mind DMing me your IV protocol? My daughter has benefitted from IV treatments with the Myers cocktail with zinc, but that was when she was still moderate. She’s now very severe. Thanks.
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ME Action Now
ME Action Now@MEActNOW·
@NeurologistMom Unfortunately, they all cost a fortune 😔 I can DM you the protocol - if someone is willing to prescribe it, you can get a nurse to administer it... My doctor used to ship all over the world for pwME.
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Neurologist Mom
Neurologist Mom@NeurologistMom·
There is a huge lack of understanding for the very severe patients. They are not included in studies for logistic reasons, which can be solved easily in my opinion. Almost all the molecules that benefit mild to moderate patients almost always cause life-threatening side effects in very severe patients like my daughter. How can we understand the nature of the disease if we don’t think about or care for the very severe ones?
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
@MammaBear3333 @Albazealba @NeurologistMom My daughter caught Covid in January 2020, well before there was a vaccine. She has had symptoms of Long Covid since then and has gotten progressively worse. So, yeah, I don't blame vaccines.
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Neurologist Mom
Neurologist Mom@NeurologistMom·
He died from Long COVID today. His words: “I’ve experienced more discrimination and stigma for being openly disabled by #LongCovid than I ever did for being openly gay” When will the gaslighting stop? How many more need to die?
Neurologist Mom tweet media
thetranscendedman@atranscendedman

New York designer Derrick Kardos, known for Black Swan and The Departed, has died at 53 from complications of Long COVID. He was a fierce creative force and advocate for Long COVID recognition. hollywoodreporter.com/movies/movie-n…

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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
@JillMansell Thanks for the heads up! I just purchased it and can't wait to read it. Your books always bring me to a happy place.
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
@DafoeWhitney @renamemecfs You're an inspiration, and I'm happy to hear that you've seen some improvement. I'm just wondering how Abilify, which appears to be a psychiatric medication, was able to help you physically. I know there's a mind/body connection, so I'm very curious to hear your thoughts.
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Whitney Dafoe
Whitney Dafoe@DafoeWhitney·
I was bed bound and hardly able to move, unable to eat a crumb of food or drink a drop of water and unable to communicate in any way, even notes or gestures (except for a few phases where I could hand write notes) from 2013-2020. Abilify made me so much better I could use a phone and computer and commnicate again. And it's affects have worn off a bit but my baseline is way way up. I'm still very or extremely severe. I also started drinking water and then eating again in 2024, and now get all my calories from real food not my Jtube. You can read about it in this post on my ME/CFS website whitneydafoe.com/mecfs/?post=i-… There's definitely hope for pulling out of the abyss, but I also tried a lot of drugs that did nothing at all. And I'm still frustrated with the state of my health. But keeping on... ❤️
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Rename MECFS
Rename MECFS@renamemecfs·
Has anyone improved from the extremely severe? If so how? Please retweet for better reach thank you. ❤️
Rename MECFS tweet media
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
6/ that will alleviate these worrying symptoms and get her on a path to improving her baseline. I welcome any and all valid suggestions for doctors and any other well-meaning advice. Thank you. #MECFS #LongCovid
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
1/ My daughter has been suffering from ME/CFS, POTS, MCAS, EDS and probable gastroparesis since contracting Covid in January 2020, and her baseline over the past several months (since evacuating from the Los Angeles Eaton wildfire in January) has plummeted. #MECFS #LongCovid
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
5/ someone who can confidently make that determination and help her get to the point where she can eat, drink and sleep. We’re in Los Angeles County and need to find an ME/CFS specialist or any doctor who has a strong understanding of the illness that can help her get treatment
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
4/ (bananas, rice, apples, and toast). Even though all she’s injested is apple juice since yesterday afternoon, she is vomiting it all out and is absolutely terrified of her extreme, negative baseline shift. It’s possible that it’s just an intense PEM episode, but she needs
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
3/ and Zofran for nausea, and also ran a series of tests and procedures. Everything came up negative and ECG and x-rays showed no areas of concern. She was given an RX for the nausea and was told to just drink clear liquids for a day then introduce the BRAT diet
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NomadicLibrarian
NomadicLibrarian@NomadicLMS·
2/ In the past few days, she has been unable to keep any food or drink down, has been having severe temperature dysregulation, and is struggling to sleep due to the intense pain in her abdomen. She went to the ER yesterday, where they gave her two bags of saline for dehydration..
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