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V\u00e4rsta veckojobbet, att fylla dosetten. Alla dessa f\u00f6rpackningar och burkar som knappt jag<\/em> f\u00e5r upp.<\/p>\n

Alva m\u00e5r illa varje dag. Vet inte om det \u00e4r Cellcepten, som hon ju tar maxdos av sen ett tag, 3 kapslar p\u00e5 morgonen och 3 p\u00e5 kv\u00e4llen. Det \u00e4r en k\u00e4nd biverkan, men man vet ju inte, kan lika g\u00e4rna vara SLE eller en kombination.<\/p>\n

Vi ska skriva ner och f\u00f6rs\u00f6ka prioritera allt till l\u00e4karbes\u00f6ket hos ordinarie reuma den 4 januari. Om vi hinner, g\u00e5 igenom alla l\u00e4kemedel. \u00c4ntligen?? Fortfarande inte f\u00e5tt svar p\u00e5 mycket. L\u00e4skigt hur l\u00e4tt en person kan falla mellan stolarna, n\u00e4r ansvarig \u00e4r borta. Jag kan bara hoppas att inget allvarligt fysiskt h\u00e4nt inuti hennes kropp, f\u00f6r psykiskt \u00e4r det tufft nu. Kan en kontaktsjuksk\u00f6terska g\u00e5 att f\u00e5 till tro? En kroniskt sjuk tjej ska inte beh\u00f6va f\u00f6rsvara sig n\u00e4r hon beh\u00f6ver l\u00e4karkontakt, k\u00e4nna sig bortmotad. Det kan och har h\u00e4nt d\u00e5liga saker d\u00e5. T\u00e4nker p\u00e5 de som inte klarat sig.<\/p>\n

Jag vet inte \u00e4n hur jag ska t\u00e4nka f\u00f6r att frustrationen \u00f6ver att bot eller b\u00e4ttring kommer ta forever? Acceptera att det aldrig pratas om barn\/unga med sv\u00e5r SLE. Att det inte g\u00e5r att sj\u00e4lv g\u00f6ra n\u00e5gon skillnad pengam\u00e4ssigt, mer \u00e4n sm\u00e5summor d\u00e5 och d\u00e5. Riktad forskning f\u00f6r att hj\u00e4lpa denna lilla grupp. Min stora dag-hj\u00e4lp \u00e4ven efter 18 \u00e5r. Den enorma skillnaden i v\u00e5rden efter 18.<\/p>\n

Ja, det \u00e4r inte konstigt att jag m\u00e5r som jag g\u00f6r. Det \u00e4r mer fr\u00e5gor och \u00f6nskningar \u00e4n svar som vanligt och det har tagit ut sin r\u00e4tt. Men Alva, jag kommer att komma tillbaka, g\u00f6r mitt b\u00e4sta, men det vet du.<\/p>\n

Vilken talang p\u00e5 rim hon \u00e4r allts\u00e5 ?, det h\u00e4r till en t\u00e4vling jag r\u00e5kade se;<\/p>\n

Hoppas jag kan ha lite tur,<\/p>\n<\/blockquote>\n

Att det kanske plingar till i min lur,<\/p>\n<\/blockquote>\n

En virtuell raket f\u00f6r att fira nytt \u00e5r,<\/p>\n<\/blockquote>\n

En kram och ett bidrag till nytt h\u00e5r,<\/p>\n<\/blockquote>\n

Som sjuk sedan jag var liten,<\/p>\n<\/blockquote>\n

T\u00e4nker man ibland inte p\u00e5 annat \u00e4n skiten,<\/p>\n<\/blockquote>\n

N\u00e4r medicinerna skalar av s\u00e5nt som \u00e4r jag,<\/p>\n<\/blockquote>\n

S\u00e5 f\u00e5r man fejka f\u00f6r att ta sig igenom var dag,<\/p>\n<\/blockquote>\n

Flintis vill jag inte vara,<\/p>\n<\/blockquote>\n

Gillar delar och hoppas nu bara ?<\/p>\n<\/blockquote>\n

Idag var vi hos ordinarie reumatolog. S\u00e5 l\u00e4ttad och glad att hon \u00e4r tillbaka, k\u00e4nner mig lugnad. R\u00f6ntgenbild fr\u00e5n bilolyckan 16 november ska skyltas, remiss till osteoporosmottagningen skrivas, s\u00e4nkning av cortison till 6,25 mg??. Prov efter bes\u00f6ket p\u00e5 TSH, eftersom hon \u00e4r s\u00e5 darrh\u00e4nt, fick v\u00e4nta l\u00e4nge och bli stucken 6 g\u00e5nger innan resultat ?.<\/p>\n

Tacksam trots allt??<\/p>\n

Gott nytt \u00e5r!<\/p>\n","protected":false},"excerpt":{"rendered":"

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Det \u00e4r en k\u00e4nd biverkan, men man vet ju inte, kan lika […]<\/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":[31,811,33,20,21,25],"tags":[548,817],"jetpack_publicize_connections":[],"yoast_head":"\nNytt gr\u00e5tt h\u00e5r! - 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\/antligen\ud83d\ude4f\ud83c\udffc\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nytt gr\u00e5tt h\u00e5r! - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"V\u00e4rsta veckojobbet, att fylla dosetten. 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