under_transformation

Long covid brought me here. In a shitty club with great people #FBLC #PEM #PESE #MECFS bluer skies: trans4m8tion

[under_transformation @_trans4m8tion]

A salute is a salute. I am slowly transitioning to bluer skies, username trans4m8tion.
let's connect to stay strong allies.
Please feel free to leave tips for a spoon-saving transition for #pwme #pwlc in the comments, I will pin this. @SGME_CH @notrecovered

[under_transformation @_trans4m8tion]

AI should not pass us by. I see potential where it can help the chronically ill and their carers. Here is a small sample how coding takes five minutes using @wispr and @lovable for their mothers day campaign - https://t.co/gCYQHSSFx0

[under_transformation @_trans4m8tion]

@alexandrer81988 @scott_scientist are you still on it? what was your benefit from it in the end?

[under_transformation @_trans4m8tion]

@DafoeWhitney If it is related to blood flow, it could be potentially interesting to try out supplemental oxygen and see whether it helps your brainfog in the more challenging POTS positions. Worked for me when i really needed it (avoided dependency on it, as co2 -o2 balance is also important)

[charlos @loscharlos]

🚨ACTION: #LongCovid research funding is on track to be fully eliminated & could mean the difference between treatments in our lifetime or not.

If you care about that — please take action & share this!

1. Call: https://t.co/qTIIRDri7M

2. Email: https://t.co/wGeuzXrjqK

[under_transformation @_trans4m8tion]

@Naomi_D_Harvey Getting especially triggered by the "tingling" this week. There are neurological comorbidities with LC like GBS or CIDP that need (and often can) be treated ASAP. Ignoring them however might lead to more permanent damage. Something almost completely overlooked IMO.

[under_transformation @_trans4m8tion]

@L_Habets @Larsonauti Werden Sie die Patienten nachverfolgen? (Frage, da bei mir 1 Jahr nach Immunadsorption AAK wiederkamen und Ronapreve keine Wirkung hatte - interessiere mich sehr für Daratumumab)

[under_transformation @_trans4m8tion]

Fünf Jahre Long Covid - danke @lucyschroniclife_: https://t.co/U3TKMXzfQ4

[under_transformation @_trans4m8tion]

https://t.co/brZy4xoblR for a thread option on bluesky

[under_transformation @_trans4m8tion]

A salute is a salute. I am slowly transitioning to bluer skies, username trans4m8tion.
let's connect to stay strong allies.
Please feel free to leave tips for a spoon-saving transition for #pwme #pwlc in the comments, I will pin this. @SGME_CH @notrecovered

[under_transformation @_trans4m8tion]

@SGME_CH @notrecovered to save your bookmarks, one way simpler than the method outlined in the wikihow is to subscribe to https://t.co/Xx2RIVtfUn (and export it). Last I checked, you could cancel the subscription anytime. Ask a friend for help if you are out of spoons to do this.

[under_transformation @_trans4m8tion]

there are also aggregator services now, but I am not very familiar with them yet. E.g. Fedica or Croissant to cross-post, or Openvibe to see posts from X and bluesky in one app.

[under_transformation @_trans4m8tion]

ALT text in bluesky appears on the top left of the picture you want to post. In the accessibility settings, you can force ALT text to be added before posting.

[under_transformation @_trans4m8tion]

@Lisathefirst20 Leider keine Erfahrungen von meinen SCIG-Ladies dazu. Kortikosteroide für Nebenwirkungsvermeidung vor der Infusion ja, aber nicht zu hochdosiert danach. Oh Mann, ich drücke dir die Daumen.

[Lisa @Lisathefirst20]

folgendes, SCIG hat mir total geschadet.
erbrechen, zittern dann crash.
komme von Bell 5 aktuell nicht weg.
immer wieder Fieber, wache jeden Tag morgens mit PEM auf trotz striktem Pacing.

Ärztin schlägt Prednisolon vor um Immunsystem runterzufahren.

Ja oder nein?

[under_transformation @_trans4m8tion]

@sibylle_berlin @Naomi_D_Harvey Red light (low level laser therapy/ biophotomodulation): Gibt ne Matte zum Draufliegen. Therapad von https://t.co/tp2C5yF6wJ war die mit bester Preis-Leistung. Vorsichtig anfangen. Gerne DM bei Fragen.

[under_transformation @_trans4m8tion]

@Lisathefirst20 Mir geht es ähnlich. Ich denke, ich pinne einen "I am done here" Post und versuche, so viele wie möglich zu finden und zum Wechseln zu überreden. Gab es nicht ein Tool, mit dem man die Accounts abgleichen kann?

[Dr. Sabine Hermisson 🦋 @SabineHermisson]

🆘
"Tut mir leid, dass ich mich an dich mit furchtbarem Thema wende.
Aber mir gehts so furchtbar nach Verschlechterungen, dass ich nicht mehr sprechen kann (9 J bettlägerig).
Ich nicht weiß, wie ich Arztgespräch für Sterbeverfügung absolvieren soll.
Hab so Angst."

[under_transformation @_trans4m8tion]

@thevoidinspace @chydorina Just be super careful with those vibration plates. I used them nov 21 and had a big crash (stutter for half a year, loss of voice etc).