#vasculitis — Public Fediverse posts

So heavily sedated and sleeping at mo (among other increased neuro symptoms) as latest consultant-pushed try at getting my immunosuppression dose a bit lower fails. Glum from it all! Grateful to manage anything productive in the circumstances :) Happy managed historical research late this afternoon. #neuro #autoimmune #immunosuppression #vasculitis #cerebralVasculitis #illness #chronicIllness

Delighted to manage 90 mins #accordion #practice, mainly trying #musicals tunes I'll do new arrangements of. Also played French #musette, Despacito, #ABBA, Bergerac, Spanish Gypsy Dances, #Scottish traditional etc. Been weaker on my right side since a huge cerebral #vasculitis relapse/ #stroke like thing in 2004. So it was marvellous to do well today. Here's a recording of a #GuysAndDolls tune A Woman in Love written as extra for the 1955 movie. Tentatively played here. #squeezebox #music #neuro

Battling with the first thing Monday health centre phone queue. Still neurologically flaring so would struggle hugely to come in today. Huge thanks to the district nurse coming instead of my practice nurse appointment. I rarely have to switch re bloods but it can be a huge help. #NHS #NHSTayside #Housebound #Nursing #Medicine #HealthCentre #GP #neuro #flare #vasculitis

cns/cerebral #vasculitis is unfortunately typically only discovered post #ischemic events since the inflammation is often in micro vessels and hard to find. i was text book in this regard and thats what it took in 2010 for them to find it and upgrade my dx from cns lupus/ra to the addition of cns vasculitis too.
but #thankfully so far #life has gone on regardless. tho its a strange and challenging thing to live thru. but so #happy to be #alive.
in #2023 i want to hopefully up my #selfcare and diminish my feelings of guilt and unworthiness for my deficits.
#resolution #newyear #illness #happiness #diagnosis #unlucky #lucky #vasculitis #lupus #rhematiodarthritis

cns/cerebral #vasculitis is unfortunately typically only discovered post #ischemic events since the inflammation is often in micro vessels and hard to find. i was text book in this regard and thats what it took in 2010 for them to find it and upgrade my dx from cns lupus/ra to the addition of cns vasculitis too.
but #thankfully so far #life has gone on regardless. tho its a strange and challenging thing to live thru. but so #happy to be #alive.
in #2023 i want to hopefully up my #selfcare and diminish my feelings of guilt and unworthiness for my deficits.
#resolution #newyear #illness #happiness #diagnosis #unlucky #lucky #vasculitis #lupus #rhematiodarthritis