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Kan inte greppa att det \u00e4r femton \u00e5r vi levt med diagnosen extra allt. Det blir sv\u00e5rare med tiden. Jag har ingen insyn, trots att jag varit experten p\u00e5 sjukdomen och hur hon reagerar p\u00e5 den och mediciner sen dag ett. Men detta enbart f\u00f6r att hon blev myndig. Det har resulterat i m\u00e5nga misstag och en s\u00e5 stor frustration och hj\u00e4lpl\u00f6shet. <\/p>\n\n\n\n

Det har \u00e4ven f\u00f6rt oss l\u00e4ngre ifr\u00e5n varann (p\u00e5 ett s\u00e4tt), d\u00e5 hon inte kan f\u00e5 samma hj\u00e4lp av mig, n\u00e4r hon m\u00e5r d\u00e5ligt. Hon har haft skov i hj\u00e4rnan sen flera \u00e5r tillbaka, har f\u00f6r\u00e4ndringar synliga p\u00e5 magnetkameraunders\u00f6kningar, psykiatriska diagnoser som \u00e4r riktigt tuffa samt medicinlistan from hell, att administrera, f\u00e5 kontakt med v\u00e5rden sj\u00e4lv med. N\u00e4r minnet och uth\u00e5lligheten \u00e4r obehagligt d\u00e5ligt p\u00e5 henne. Det \u00e4r dessutom mest telefonkontakter med v\u00e5rden, mycket s\u00e4llan fysiska bes\u00f6k. Hj\u00e4lpl\u00f6st. Och psykosocialt att inte f\u00e5\/kunna f\u00f6rs\u00f6rja sig, vad g\u00f6r inte det med en m\u00e4nniska.<\/p>\n\n\n\n

Jag \u00e4r arg och nerv\u00f6s, och jag ser ingen ljusning p\u00e5 detta stora v\u00e5rdproblem. S\u00e5klart t\u00e4nker jag p\u00e5 n\u00e4r jag inte finns, n\u00e4r hon sj\u00e4lv m\u00e5ste k\u00e4mpa f\u00f6r att f\u00e5 v\u00e5rd. Det ska inte k\u00e4nnas s\u00e5h\u00e4r, att ha en livsl\u00e5ng sjukdom. En diagnos med s\u00e5 mycket extra allt. Att st\u00e4ndigt bli ifr\u00e5gasatt. Hon vill redan nu inte kontakta l\u00e4kare, eftersom de h\u00e4nvisar till v\u00e5rdcentralen eller bokar telefonbes\u00f6k. Har man SLE sen 15 \u00e5r s\u00e5 \u00e4r det tufft att beh\u00f6va b\u00f6na och be, f\u00f6rklara varf\u00f6r man beh\u00f6ver v\u00e5rd ibland, jag f\u00f6rst\u00e5r att hon inte orkar. Det beh\u00f6vs en \u201dv\u00e5rdapparat\u201d som ser till helheten, en sjuk m\u00e4nniska orkar inte.<\/p>\n\n\n\n

Vaken sen 3, men nu m\u00e5ste jag ut med Kurtan och Kila, sen ska jag baka saffransvaniljbullar. Mycket senare.<\/p>\n\n\n\n

\"\"
Kurt & Zigge f\u00f6rsta advent 2016<\/figcaption><\/figure>\n\n\n\n

F\u00f6r forskning om hj\u00e4rnans sjukdomar: Hj\u00e4rnfonden<\/a><\/p>\n\n\n\n

Forskningen om depression och bipolaritet \u00e4r gravt underfinansierad. <\/p>\n\n\n\n

\"\"
Bevis\ud83d\ude05\ud83d\udd6f<\/figcaption><\/figure>\n\n\n\n

Jag l\u00e4ser och redigerar inl\u00e4gget dagen efter, idag m\u00e5ndag. Bara sl\u00e5r mig hur jag upprepar mig ang\u00e5ende just detta\u2026 Tyv\u00e4rr blir det ju bara v\u00e4rre. T\u00f6rs man ens hoppas att det ska bli b\u00e4ttre?<\/p>\n","protected":false},"excerpt":{"rendered":"

Kan inte greppa att det \u00e4r femton \u00e5r vi levt med diagnosen extra allt. Det blir sv\u00e5rare med tiden. Jag har ingen insyn, trots att jag varit experten p\u00e5 sjukdomen och hur hon reagerar p\u00e5 den och mediciner sen dag ett. Men detta enbart f\u00f6r att hon blev myndig. Det har resulterat i m\u00e5nga misstag […]<\/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":[1041,5,835,6,31,811,32,33,1011,15,20,21,18,22,25,27],"tags":[1119],"jetpack_publicize_connections":[],"yoast_head":"\nF\u00f6rsta advent \ud83d\udd6f - 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\/forsta-advent-\ud83d\udd6f\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"F\u00f6rsta advent \ud83d\udd6f - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Kan inte greppa att det \u00e4r femton \u00e5r vi levt med diagnosen extra allt. 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