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Varning f\u00f6r klagoinl\u00e4gg, om \u00e4n relevant!<\/p>\n\n\n\n

\u00c4rligt talat m\u00e5r vi skit b\u00e5da tv\u00e5, men det v\u00e4rsta \u00e4r inte det, utan att man inte har n\u00e5nstans att f\u00e5 hj\u00e4lp. Det har g\u00e5tt s\u00e5 j\u00e4kla l\u00e5ngt att man inte t\u00f6rs\/kan\/vill\/b\u00f6r s\u00f6ka akut. Med all r\u00e4tt, kroniska sjukdomar som SLE t ex ska <\/strong>inte g\u00f6ra det. De ska f\u00e5 hj\u00e4lp och koordinering via sin reumatolog\/ansvariga l\u00e4kare. Jag avskyr alarmistiska uttryck som ”vad har h\u00e4nt med den svenska v\u00e5rden”, men tyv\u00e4rr undrar jag ocks\u00e5. Det blir bara s\u00e4mre f\u00f6r varje \u00e5r som g\u00e5r. Var g\u00e5r det fel? \u00c4r alla f\u00f6r utbr\u00e4nda f\u00f6r att orka bry sig om sv\u00e5rt sjuka l\u00e4ngre? Eller \u00e4r det ”bara” flera sjuka m\u00e4nniskor? Tar ju ett tag att utbilda specialistl\u00e4kare… Eller \u00e4r det pengarna, som inte finns f\u00f6r patienter? Bara f\u00f6r byggnader och administrativa kostnader? <\/p>\n\n\n\n

Min postcovid har noll uppf\u00f6ljning. Jobbar heltid trots alla symptom. Orkar \u00e4rligt talat inte kriga f\u00f6r eventuell v\u00e5rd l\u00e4ngre, det finns ju \u00e4nd\u00e5 ingen hj\u00e4lp att f\u00e5 \u00e4n. Jo, typ inhalationer kanske, eftersom det k\u00e4nns som jag har nedsatt lungkapacitet. Mot mardr\u00f6mmar\/hallucinationer, andf\u00e5ddhet och d\u00f6ds\u00e5ngest vet jag inte. <\/p>\n\n\n\n

\"\"
UNT 31 maj<\/figcaption><\/figure>\n\n\n\n
\"\"
UNT 29 maj<\/figcaption><\/figure>\n\n\n\n

Alvas SLE \u00e4r f\u00f6r j\u00e4vlig sedan flera \u00e5r, senaste \u00e5ret hemsk. Sendoxankuren \u00e4r avslutad, hon har snarare blivit s\u00e4mre. Det g\u00e4ller s\u00e5v\u00e4l fysiskt som mentalt. Hon har inte kunnat jobba sen februari, ryggfrakturen. F\u00e5tt k\u00e4mpa sig till fysioterapi, blivit h\u00e4nvisad till v\u00e5rdcentralen, som h\u00e4nvisar till sjukhuset osv. Uppf\u00f6ljning i princip en g\u00e5ng per \u00e5r med reuma \u00e4r f\u00f6r lite. Det hinner tyv\u00e4rr h\u00e4nda v\u00e4ldigt mycket p\u00e5 ett \u00e5r. Hon har ju en sv\u00e5r SLE med extrema l\u00e4kemedelsbehandlingar i 15 \u00e5r snart, men \u00e4nd\u00e5 s\u00e5 behandlas hon som icke prioriterad. Det \u00e4r mitt barn vi pratar om! Jag orkar inte som f\u00f6rr, men just nu \u00e4r det tigrinnan som kommer fram. Kan inte ens sortera i ordning allt som \u00e4r fel, det \u00e4r bara f\u00f6r mycket. Skakningar\/ryckningar i alla extremiteter, s\u00f6mnbrist, apati, aptitl\u00f6shet, illam\u00e5ende, kr\u00e4kningar, \u00e5ngest, l\u00e4kemedelsbiverkningar, h\u00e5ravfall, magont, ryggsm\u00e4rta….<\/p>\n\n\n\n

Det har varit och \u00e4r m\u00e5nga l\u00e4karbes\u00f6k\/r\u00f6ntgen, brukar vara s\u00e5 i maj-juni, alla p\u00e5 en g\u00e5ng liksom. Som vanligt f\u00e5r man hoppas innerligt p\u00e5 nytt hopp vid dessa. Att hon ska f\u00e5 m\u00e5 b\u00e4ttre. Hon \u00e4r liksom v\u00e4rd det.<\/p>\n\n\n\n

Forskning och nya l\u00e4kemedel p\u00e5g\u00e5r\/finns. SAPHNELO <\/a> <\/p>\n\n\n\n

Vaccination mot covid19 f\u00f6r riskgrupper som Alva? Hon har bara f\u00e5tt tre \u00e4n, har sett att flera med SLE f\u00e5tt fyra och \u00e4ven fem vaccinationer. <\/p>\n\n\n\n

F\u00e5r hon den b\u00e4sta v\u00e5rden, de b\u00e4sta behandlingarna? M\u00e5ste jag kriga f\u00f6r det? Ja, jag tror faktiskt det. Min erfarenhet p\u00e5 15 \u00e5r s\u00e4ger mig det.<\/p>\n","protected":false},"excerpt":{"rendered":"

Varning f\u00f6r klagoinl\u00e4gg, om \u00e4n relevant! \u00c4rligt talat m\u00e5r vi skit b\u00e5da tv\u00e5, men det v\u00e4rsta \u00e4r inte det, utan att man inte har n\u00e5nstans att f\u00e5 hj\u00e4lp. Det har g\u00e5tt s\u00e5 j\u00e4kla l\u00e5ngt att man inte t\u00f6rs\/kan\/vill\/b\u00f6r s\u00f6ka akut. Med all r\u00e4tt, kroniska sjukdomar som SLE t ex ska inte g\u00f6ra det. De ska […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"jetpack_publicize_message":"","jetpack_is_tweetstorm":false,"jetpack_publicize_feature_enabled":true},"categories":[1041,1007,5,835,28,6,8,9,1067,10,1012,31,811,32,33,852,1011,15,20,21,18,24,25],"tags":[128,151,271,1004,900,863,1070,597,653,815],"jetpack_publicize_connections":[],"yoast_head":"\nWhere to begin... - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lupusmamman.se\/blogg\/where-to-begin\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Where to begin... - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Varning f\u00f6r klagoinl\u00e4gg, om \u00e4n relevant! \u00c4rligt talat m\u00e5r vi skit b\u00e5da tv\u00e5, men det v\u00e4rsta \u00e4r inte det, utan att man inte har n\u00e5nstans att f\u00e5 hj\u00e4lp. 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