Hello disabled.social! #introduction
I'm Chad, I live in Sheffield in the UK. I'm #autistic and #immunosuppressed (psoriasis, arthritis, asthma). I'm #nonbinary #queer
I'm really into videogames (#RPG #JRPG #Rougelites #Soulslikes) and digital #accessibility. Will mostly be posting about disability, gender and gaming really. I do some public speaking about accessibility https://www.kitation.co.uk/talks/
How many #Accessibility #Telepresence units do you set up at your [ community / progressive / socially-aware / self-declared-ally / pat-yourself-on-the-back ] in-person event, so that #ImmunoCompromised / #ImmunoSuppressed folks can participate remotely.
None?
Yeah, thought so.
Also, the #ImmunoCompromised & #ImmunoSuppressed are no longer allowed to protest in #VicPol.
That definitely needs to be challenged at #AHRC - this is a law that explicitly blocks the ability of #Disabled people to participate in protected political activities, on the basis of banning their #Enabling #Assistive medical devices. https://aus.social/@BestPreston/113667451912121998
What part of #Progressive #Intersectionality is it where you're a vocal #Advocate / #Ally for every oppressed minority group, but also “fuck the #Immunosuppressed and #Immunocompromised” because you want to go to bars, clubs, restaurants, and gigs, and don't want to wear a #Mask? #Covid #CovidIsNotOver #YAllMasking #NotSoHighHorse
Pleased to manage some journal paper work this afternoon, then watch two #Worldcon panels on catchup ("Scot-ish: The Influence of Scotland on Fantasy Worldbuilding", and "It's Life, Jim, but Not as We Know It" about searching for life beyond Earth). Still #Covid neg but we're pretty sure I had it too. Picked up on a brief visit to #StAndrews. We didn't dare go to Worldcon in person for the infection risk to severely #immunosuppressed me. #Scotland #Fantasy #SearchForLifeInSpace #LifeInSpace
Envious of my friends (including some St A CS folks!) who are heading to the #Glasgow #Worldcon this week. Sadly though we have in person attending tickets we can't go. I'm far too seriously ill now to manage it. Plus the infection risk is too high for severely #immunosuppressed me. We can use the #streaming part of our tickets though, both during the event, and on catchup after through to Christmas. So will get to see lots. Have fun folks going! #Covid #GlasgowWorldcon #Worldcon2024
And there it is. At the McDonald’s in Cloquet, MN (US) of all places. For the first time I got hassled for wearing a mask. An old lady repeatedly insisted “it's safe now” and “you need to stop wearing that thing on your face.” Sigh. #Covid #CovidCautious #CovidIsNotOver #Immunosuppressed
Has anyone gotten Pemgarda? Kaiser says, and I quote, "...Pemgarda is not offered at Kaiser, pending further safety and data review. There is no clear timeline as to when it may be approved and/or offered to select patients through Kaiser." Let's ignore the FDA said it's safe enough to use in this emergency situation for immunocompromised patients. tbf I'm cheaper to Kaiser dead of covid. I'm willing to pay out of pocket if needs must. #NEISVoid #Pemgarda #Immunosuppressed #PsoriaticArthritis
Huge thanks to #NHSTayside for my 9th Covid vaccine this morning. Very efficiently done, and I'm extremely grateful for the protection, even if my #autoimmune neuro disease sadly flares dramatically for 3 months after every #Covid #vaccine (yes my doctors know and we agree I keep getting them). Having had Covid 3 times in recent months I want the protection too much not to take my offered vaccines. Thanks to the #NHS. I'm severely #immunosuppressed, hence so many vaccines. #Tayside #NHSScotland
Booked in for my 9th #Covid #vaccine by #NHS #Tayside. I get so many because I'm severely #immunosuppressed. Covid vaccines have all so far triggered 3 month long #autoimmune #neurological illness #flares for me. Extremely hard to cope with. But I need my protection more. I'm lucky to generate #antibodies. #neuro #NHS #NHSScotland
Back home from my second (last dose) #shingles #vaccination at the #Dundee Vaccination Centre in the city centre. Huge thanks to #NHS #Tayside staff and volunteers again. I qualify for the shingles vaccine this year because it's being extended to severely #immunosuppressed people aged 50+. Very grateful. #vaccine #NHSScotland #NHSTayside
Rejigging two dental appointments at the start of February. Too soon with my current Covid infection. It's amazing how little guidance there is about this. I found one dental professional saying 14 days gap for healthy people. CDC America recommends severely immunosuppressed people like me should isolate for at least 20 days because we shed virus for longer. Bearing everything in mind I'm now rebooked for end February (checkup) and end March (hygienist). #Dentist #NHS #Covid #immunosuppressed
Mass General Brigham (Boston) is bringing back the mask mandate.
It's about time. It's damn weird being just about the only one in the hospital (including the various buildings) wearing a mask.
Got a letter for my first of two #shingles #vaccines. Severely #immunosuppressed people aged over 50 are being offered them from this year. An unpleasantly early appointment time, but at least the city centre should be fairly quiet. The appointment is for early January. Thanks to the #NHS #NHSScotland #NHSTayside #vaccine
Latest #Covid (my 8th) and #flu (umpteenth) #vaccines acquired. Huge thanks to the friendly and efficient #NHSTayside staff and volunteers at #Dundee city centre #vaccination centre. Immensely grateful to get this, as someone who is severely #immunosuppressed. And is now thankfully generating antibodies. #NHS #NHSScotland
Relieved to be back on my strong #immunosuppression drug tonight, that keeps my frustratingly active life-threatening #neurological disease under control. But also grateful that I stopped the same drug for 2 weeks while I got through my first brush with #Covid. That helped my body cope with the #infection. But yup, feel safer tonight. #immunosuppressed #neuro
7 days into #Covid, slowly #recovering. Still taste odd, snuffly, and sleeping phenomenally (even more than my normal neuro illness). But encouraged. Didn't get #antivirals tho #immunosuppressed cos didn't test positive on #LFT within 5 days (or at all) - my healthy husband who gave me the infection barely tested positive - looks like really low viral load for us, thankfully. But recovering. Honestly grateful to be managing so well in the circumstances. Our first time with Covid.
Probably missing another fab #history #streaming workshop shortly. #Covid has hit my household for first time. Looks like very low viral load. I’m still negative #LFT but sure have it too. Sadly with neg LFT #immunosuppressed me can’t access #antivirals. But slowly recovering. Could have been much worse. I have temporarily paused my strong #immunosuppression drug.
I tried to get the latest #covid #booster at #cvs and it was a #clusterfuck. My local medical clinic, where I get most of my care, will have it very soon and I will go get it there.
Even though I am #immunosuppressed and my risk of illness is higher my lifestyle is such that my risk of exposure is pretty low, so I am not worried about waiting a handful of weeks.
https://journa.host/@wausaupilot/111150018268256164
A few weeks ago my physical therapist told me that she had recently been on an airplane, and before she went back to work she thought that just in case, she should test for #covid. She was positive. She ended up getting cold symptoms, but if she had not tested, she and I would have been sitting in a tiny room together face to face for 45 minutes with her collective #viruses, and I'm #immunosuppressed.
https://mstdn.ca/@SCZoomers/111035940873024474
(she/her) 