iiinova — where your digital self keeps evolving

RaiinbowEyes @raiinboweyes.bsky.social · 31/03/2025

I’m still here. Just been a nasty few months. Go figure, the rise of facism and likely impending economic collapse really doesn’t help people already struggling with depression. 🙃 Please suggest to me accounts with uplifting content. I really need more good in my feed. #NEISVoid

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RaiinbowEyes @raiinboweyes.bsky.social · 22/12/2024

We paint sugar cookies for a #Yule tradition and it’s so fun! There was an extra dash of chaos in this year’s cookies and love it 😆

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RaiinbowEyes @raiinboweyes.bsky.social · 22/12/2024

Hail to Yule, the longest night of all the turning year! Awake the resurrecting light that banishes despair. For now the tide will start to turn, and night will yield to day! And the waning year will shed its skin and cast the dark away 🖤💛 Yule is Come by Jaiya youtu.be/BRRO4fF41So?...

Graphic of a holly berry wreathe against a dark green background that says, “Blessed Yule”.

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RaiinbowEyes @raiinboweyes.bsky.social · 19/12/2024

Playlist of trauma free #Yule songs - This is a playlist made up of all #Christmas sounding and themed songs, with no traditional/classic music. (May vary from where you were raised so YMMV.) Enjoy 😊 YouTube: www.youtube.com/playlist?lis... Spotify: open.spotify.com/playlist/23C...

youtube.com

Trauma Free Yuletide (US) - YouTube

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RaiinbowEyes @raiinboweyes.bsky.social · 06/12/2024

So looking forward to it! #Yule Bring Back the Light by Gypsy just popped in my head seeing this. Such a great winter solstice song ❄️ youtu.be/vfZCBzzjft4?...

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RaiinbowEyes @raiinboweyes.bsky.social · 04/12/2024

If you have #POTS and #MECFS and are affected by the #IVfluids shortage, this thread is for you. Did you know a proper Oral Rehydration Solution is proven to be as hydrating as IV fluids? And even more beneficial for than IV fluids in some ways? Not regular electrolyte drinks. Let’s talk. #NEISvoid

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RaiinbowEyes @raiinboweyes.bsky.social · 03/12/2024

I’m so upset that #LDN has made my #Narcolepsy so much worse and it’s not getting better with time. I knew this was a possibility going in, but it’s literally the only decently effective medication for #MECFS, which is far more terrifying than Narcolepsy. #NEISvoid

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RaiinbowEyes @raiinboweyes.bsky.social · 03/12/2024

Something a lot of people with #MCAS don’t know up front is that stabilizing mast cells is a long term game. It can take 6 months of taking mast cell stabilizers consistently multiple times daily to see full effects. A lot of people see really significant improvements a year later. #NEISvoid

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Eric Topol @erictopol.bsky.social · 02/12/2024

Strong new evidence for T cell exhaustion in myalgic encephalomyelitis (ME/CFS) reflecting chronic viral infection, relevant to #LongCovid, and possible path to treatment candidates www.pnas.org/doi/epub/10.... @pnas.org

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RaiinbowEyes @raiinboweyes.bsky.social · 30/11/2024

Heads up to those with #MCAS and #MCS - Dawn dish soap has changed their original blue soap and lemon free & clear fragrances. Where they were mild and tolerated by some before, they’re now horrible and causing reactions for many. Even normal folks are complaining about how bad they are. 🙁 #NEISvoid

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RaiinbowEyes @raiinboweyes.bsky.social · 28/11/2024

#Thanksgiving is hard for me. Like most of us I have baggage and trauma. This popped into my head as a new tradition to try. Writing things you’re thankful for on leaves. Then returning them outside so they will become fertilizer for new growth. 🧡

A photo of 5 fall leaves laid out on a wood table. They have words written on them in black sharpie like, peace, freedom, health, friendship, connection, love, shelter, food, etc.

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RaiinbowEyes @raiinboweyes.bsky.social · 28/11/2024

This year I stayed in my lane and just cooked turkey thighs 😆 They’re the best part if the bird IMO, and I have many years of experience with poultry thighs. I thought Cornish hens were the way to go, but this is even better!

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Kelly @broadwaybabyto.bsky.social · 27/11/2024

Healthcare workers didn’t have a problem masking prior to COVID. Especially in NICU, oncology, transplant and/or around vulnerable patients I never received pushback. Now ALL I get is pushback Masks were made political & the patients suffer. Wear a mask. It’s the right thing to do.

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RaiinbowEyes @raiinboweyes.bsky.social · 27/11/2024

Nothing like the crushing day-before-thanksgiving depression, where SAD and holiday trauma collide. Going it alone this year which I wasn’t expecting. This year compounded by a multitude of looming existential threats. Who’s in the same boat? Wanted to say you’re not alone I guess. #NEISvoid

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Kelly @broadwaybabyto.bsky.social · 24/11/2024

Being disabled and chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better. When you don’t - they abandon you. 🧵/1

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The Skylark @theskylark.bsky.social · 23/11/2024

All aboard the Skylark! A feed for the Long Covid community's new arrivals to BlueSky. You may not have time or energy to re-establish your connections just yet, so this feed will repost from all your trusted LC advocates and allies. Think of it as a gentle landing until you're ready to rebuild.

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RaiinbowEyes @raiinboweyes.bsky.social · 24/11/2024

The holiday should be about giving back to the natives and being thankful for their kindness, as well as teaching acceptance and generosity for immigrants fleeing corrupt regimes. That’s the real spirit of #Thanksgiving.

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RaiinbowEyes @raiinboweyes.bsky.social · 24/11/2024

If you have a cardiac condition like #INOCA (often caused by #LongCOVID and possibly #POTS / #dsyautonomia ) that is triggered by the cold, masks give a buffer from breathing the cold air helps prevent flares! #NEISvoid

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RaiinbowEyes @raiinboweyes.bsky.social · 24/11/2024

As someone with #MECFS and #MCAS, cooking Thanksgiving dinner seems impossible. This year my husband is helping me cook, and we started last week- cooking one thing at a time and freezing it. So the day of, we can defrost and have a traditional dinner that won’t upset my mast cells. #NEISvoid

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Imani Barbarin @imanibarbarin.bsky.social · 21/11/2024

To the person who posted years back that whenever you’re on a customer service line with a switchboard and you want to talk to someone, just keep pressing “0” until you get a human…I could kiss you, I hope your pillow is always cool, I pray your wine succulent and sweet, I hope you know love…

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RaiinbowEyes @raiinboweyes.bsky.social · 21/11/2024

Got my first #HOCl generator! Fingers crossed my mast cells are chill with it. It’s supposed to be very gentle and one of the most effective and well tolerated cleaners, but all the #MCAS folks know what unpredictable jerks mast cells can be.

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Long Covid Advocacy @longcovidadvoc.com · 19/11/2024

Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME

It is shocking to see allies provoke distress in the community. We feel that the letter from The ME Association's Chairman of 20 yrs, Neil Riley, in the ME Essentials magazine was deeply inappropriate, potentially harmful & out of touch.

The 'othering' & stigmatisation of ME patients as 'difficult' can only be concluded to be abusive & reflective of how people with ME are often demeaned by the medical profession.

Strong action is needed from The ME Association to restore trust & repair reputational damage; an apology for "undue upset" is not an apology.

It is our sincere wish that a way forward is found to resolve the situation. In line with There For ME, we shall remove all links & association with The ME Association.

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RaiinbowEyes @raiinboweyes.bsky.social · 19/11/2024

Luna gets snuggly when it starts to get cold 🖤 I have been blessed with under blanket lap cat 😊 She has literally never chilled under a blanket before, but between a blanket and a heating pad I guess was the way to go this time!

A photo of a black cat with yellow eyes, looking at the camera while loafing on top of a heating pad that is on the poster’s lap, and under a cream blanket.

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RaiinbowEyes @raiinboweyes.bsky.social · 19/11/2024

Let the ME Association know that the comments made by their chairman are appalling and breaking the fragile trust of the #ME/CFS community.

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Alexis Gilbert @alexisme.bsky.social · 17/11/2024

After an article by the chairman of the ME Association I’ve drafted a letter. You can add your name to the bottom or DM me l'll add it. I've written it from patients but if you're a carer, ally or health professional, just note after your name eg (Carer for pwME etc) docs.google.com/document/d/1...

docs.google.com

Letter to MEA Nov 2024

If you notice any errors, please correct them but track changes so I can see them. Dear ME Association We are writing to you as patients with ME. We were shocked and offended to read the editorial...

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Kai Kupferschmidt @kakape.bsky.social · 18/11/2024

In case you haven't seen it: @who-global.bsky.social now has a presence here on bluesky as well! #IDsky 🧪

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RaiinbowEyes @raiinboweyes.bsky.social · 19/11/2024

Finally did the thing and got an HOCl generator! Great sale on a highly recommended model. I hope my mast cells tolerate it. Could be a game changer for many things, including viral sanitization. What with #H5N1 barreling down on H2H transmission.

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RaiinbowEyes @raiinboweyes.bsky.social · 19/11/2024

Note to self- leaving BlueSky app (to go grab a link or something) discards open posts. No drafts saved. 🙁 Hope that’s on the “to fix” list? @bsky.app

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RaiinbowEyes @raiinboweyes.bsky.social · 16/11/2024

I’ve heard good things about the medical science and chronically il communities regrouping here. Let me know what community hashtags are popular here!

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