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Ig\u00e5r kom Evil 1 in p\u00e5 kv\u00e4llen, Hansa var d\u00e4r, hon verkade skamsen och f\u00f6rs\u00f6kte be om urs\u00e4kt f\u00f6r hur fel det hade blivit i m\u00e5ndags kv\u00e4ll. Alva godtog v\u00e4l inte helt, sa inte s\u00e5 mycket, men h\u00f6ll med om att det blev mycket d\u00e5ligt. Jag \u00e4r fortfarande skakad av h\u00e4ndelsen. F\u00f6r min del \u00e4r det inte den felaktiga infon, utan s\u00e4ttet de besvarade henne efter\u00e5t, idiotf\u00f6rklarade henne och var elak.<\/p>\n

Gyn kl 14.30, sen tillbaka och \u00e4ntligen bli utskriven. \u00d6ka p\u00e5 Plaquenil och s\u00e4tta in Cellcept igen i h\u00f6gre dos. F\u00f6rsta g\u00e5ngen inte cortisonet h\u00f6js, men hon har f\u00f6r m\u00e5nga biverkningar av det, s\u00e5 de ville spara p\u00e5 det.<\/p>\n

S\u00e5 himla roligt, vi st\u00f6tte p\u00e5 2 av clownerna p\u00e5 v\u00e4g ut fr\u00e5n matsalen, stannade och pratade lite och fick varsin kexchoklad?! Vi har tr\u00e4ffat clownerna m\u00e5nga g\u00e5nger, b\u00e5de p\u00e5 Astrid Lindgren och barnsjukhuset. ?\u2764\ufe0f \u00d6nskar mer och mer att jag kunde g\u00f6ra n\u00e5t som typ Min stora dag f\u00f6r unga vuxna, efter 18. P\u00e5 grund av v\u00e5ra erfarenheter de h\u00e4r 1 1\/2 \u00e5ren efter att Alva fyllde 18. Det \u00e4r s\u00e5 mycket som f\u00f6rsvinner; regelbunden psykologkontakt, ett team kring diagnosen, stickpresenter (ja, det \u00e4r inte mindre viktigt efter 18 eller hos den som \u00e4r ”van”), tryggheten, att ha en <\/b>doktor oftast och inte olika, att g\u00e5 till en <\/b>sjuksk\u00f6terska oftast, som l\u00e4r k\u00e4nna ens ”k\u00e4rl”, f\u00e5r en relation till den kroniskt sjuka. Det \u00e4r mycket som skulle kunna radas upp och bli b\u00e4ttre. P\u00e5 Barn \u00e4r det en annan respekt, som ”vuxen” f\u00f6rv\u00e4ntas du ha stenkoll sj\u00e4lv, v\u00e5ga s\u00e4ga ifr\u00e5n, vilket \u00e4r supersv\u00e5rt, helst om du \u00e4r riktigt sjuk, som Alva \u00e4r i omg\u00e5ngar. Jag \u00e4r inte trygg med framtidens n\u00f6dv\u00e4ndiga inl\u00e4ggningar och i akut skede, att hon sj\u00e4lv ska orka skrika h\u00f6gst. Vill inte heller att det ska beh\u00f6va vara s\u00e5. <\/p>\n

Jag \u00e4r helt knockad av tr\u00f6tthet och oro de senaste 2 veckorna. Tacotorsdag enligt \u00f6nskem\u00e5l n\u00e4r vi kommer hem med mormor, morfar, Oskar och Hansa, sen stallet.<\/p>\n","protected":false},"excerpt":{"rendered":"

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S\u00e5klart inte s\u00e5 l\u00e4tt att byta jobb t ex, men att vara frisk och inte ha ett […]<\/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":[31,32,33,20,21],"tags":[177,231,510],"jetpack_publicize_connections":[],"yoast_head":"\nV\u00e4rldens klokaste, minst klagande dotter \u2764\ufe0f - 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\/varldens-klokaste-minst-klagande-dotter-\u2764\ufe0f\ud83d\udc95\u2764\ufe0f\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"V\u00e4rldens klokaste, minst klagande dotter \u2764\ufe0f - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Det har jag! 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