Kana zvasvika kune hupenyu hwako ne lupus , iwe uri nyanzvi. Iwe unorarama hupenyu hwekutarisira lupus. Uye kune nzira dzakawanda dzokuti iwe ushandise izwi rako uye uwane ruzivo rwokutsigira zvido zvako uye zvinodiwa zvemuzinda we lupus.
Chinangwa chako semutevedzeri we lupus ndechokuwana izvo unoda kune mumwe munhu ane simba rokukupa zvaunoda. Izvi zvinogona kureva kuzvitaurira kune chiremba wako kana kufamba kwenyika yehutano inshuwarisi kana zvimwe zvipo.
Zvinogona kureva kushandisa izwi rako kuti ucherechedze masangano emunharaunda avo vanoda kudzidza zvakawanda nezve lupus. Kana zvinogona kureva kushanda nevatungamiriri vehurumende munzvimbo, mamiriro ehurumende, kana hurumende yekuwana rubatsiro rwehutano hwehutano hwakanaka kana hutano hwakabatana.
Kuzvidzivirira iwe pachako uye Kukurudzira paMunhu Wega
Iwe unogona kuva mutsigiri iwe pachako nenzira dzakawanda. Ichokwadi, iwe unenge watova. Kukurukurirana zvinobudirira nachiremba wenyu, somuenzaniso, ndeimwe nzira iyo iwe uri mumiririri iwe: Unobvunza mibvunzo. Iwe unofunga apo iwe unofanirwa kuva nekusanyara kana iwe unetseka pamusoro pemishonga yako kana mishonga.
Dzivisa musungo weGood Patient Syndrome. Zvakanaka Mwoyo Murefu apo munhu anotenda kuti vachawana hutano huri nani kana vachibvumirana. Vanotenda kuti kuzvitaurira ivo pachavo kuchaita kuti chiremba wavo ave sevashoma.
Uye kana chiremba wavo achivada zvishoma, chiremba wavo achavapa nehutano hwakanaka hwehutano hwakanaka. Izvi hazvisi chokwadi.
Iwe uchavandudza mikana yako yekuwana hutano hwakanakisisa kuburikidza nekuita unyanzvi hukuru hwekutaurirana navanachiremba vako, izvo zvinosanganisira kubvunza mibvunzo, kutaura zvese zvinonetsa, nekukurukura zvaunoda.
Dzimwe nguva kuzvikurudzira iwe pachako kunoreva kutsvaga rubatsiro nekuwana mumwe munhu anogona, iwewo, anokurudzira iwe pane imwe nzvimbo yakasiyana. Semuenzaniso, unogona kuonana nemunharaunda yenyu yep lupus kana uchida kuwana rubatsiro rwemishonga kuti ubatsire kubhadhara mishonga yako. Iwe unogona kutaura nemushandi wehutano hwehupatara kana iwe uchida rubatsiro kunzwisisa zvikwereti zvekurapa, kunyanya kana uchida kuti dzikudzidzise kuti unogona sei kukakavadzana mutero kana kuwana rubatsiro rwemari kubva kuchipatara. Iwe unogona kutsvaga rubatsiro kubva kune sangano renharaunda iyo inobatsira nehutano inshuwarhu kana kuverengwa kwechikwata chekudya.
Kuwedzera Lupus Awareness uye Kukurudzira paNharaunda yeVanhu
Kurera kuziva nezve lupus kunokosha pamusana pezvikonzero zvishoma. Chinonyanya kukosha, kunyanya vashandi vezvechiremba uye varwere vanoziva nezve lupus, nokukurumidza munhu anogona kugona kunyatsoongorora. Kunyanya kuzivikanwa kune chokuita ne lupus, kunyanya kuongorora lupus uye maitirwo achavepo. Ne lupus kuziva, kunyatsonzwisisika kuchavapo pamusoro peswere uye vanhu vashoma vashoma uye vasinganzwisisiki vane lupus vachanzwa.
Iva nechokuita nesangano rako rekuRupus. Masangano eLupus anoita basa rakawanda rokurera lupus awareness-like walks, dzidzo yepanyika uye kuunganidza zviitiko, uye mapoka ehupfumi ekuzivisa.
Vanowanzotsvaka rubatsiro kune vanozvipira. Taura nemunharaunda yenyu yechipusimusi kuti uende kumapato avo edzimapus kuitira kuti uchengetedze-ku-date pane lupus. Izvi zvichakubatsira iwe kuva mutauriri ane ruzivo. Asiwo taurirana navo kuti uone kuti ungavabatsira sei nebasa ravo. Vangave vachida rubatsiro nemabasa ekuchengetedza hutano kana mararamiro avo ega gore, semuenzaniso.
Igovana ruzivo nevamwe pamusoro peLupus. Kana iwe ukavabvunza, mapurusi e-lupus anowanzokupa nemashoko ekudzidzisa nezve lupus iwe unogona kupa kuvanhu. Iwe unogona kusiya mapoka ematunhu aya munzvimbo dzakadai sedare rekurasira, bvudzi remarori, hofisi yechiremba, nzvimbo yekunamatira, hofisi yehurumende, kana kuti cafe.
Vanhu vachavaona, vatore, vaverenge, uye dzidze nezve lupus. Izvi zvichabatsirawo vanhu kuti vazive kuti pane sangano rekushaya lupus rinopa rubatsiro uye zvinhu.
Usakanganwa kudzidzisa vanachiremba vako. Haasi vanachiremba vose vanoziva zvakawanda nezve lupus, kunyanya kana vasingashande mu rheumatology. Ndokusaka miitiro yakafanana neLupus Initiative iripo. Webhusaiti yavo inotsanangura, "Zvinangwa zvezvikoro zvekudzidzisa [izvo zvinopa vashandi vezvokurapa, varwere, uye vatsigiri vavo] ndezvekuwedzera nhamba yevashandi vezvechiremba vane ruzivo uye unyanzvi mukutsvaga uye kurapwa kwe lupus, kuderedza kusakanganiswa uye kusakanganiswa , kuvandudza kukurukurirana kune hutano hwakanyanya kurarama nemishonga yekurapa, uye kuwedzerwa nhamba yevarwere vanoita basa rakaoma mukurapa kwavo zvirwere. "
Kana uchida kuwana ruzivo pamusoro pekuti iwe unogona sei kubatanidza vashandi vehutano pane vetano rako rehutano nehupfumi huno, taura neLupus Initiative.
Ronga mharidzo yeLupus munharaunda yako. Vanhu vane lupus uye vadiwa vavo dzimwe nguva vanoronga zvirongwa zvepulus education ivo pachavo. Izvi zviri nyore kuita apo kune vateereri vakavakwa semusangano semunharaunda, panguva yekirasi, kana panguva kana mushure mebasa pane nzvimbo yekunamatira. Zvinowanzobatsira kana ruzivo pamusoro pe lupus runobatanidza nemumwe munhu we lupus story. Lupus zviratidzo zvinogona kunge zvakaoma kunzwisisa, ndicho chikonzero kunzwa mumwe munhu achitaura pamusoro pezvakaitika kwaari zvinogona kuita kuti chirwere chive nyore kunzwisisa.
Paridza kuparidzira paIndaneti. IInternet, kunyanya nhepfenyuro yevhidhiyo, chinhu chine simba yekusimudza lupus awareness. Vanhu vanogovana zvavanosangana nazvo pamabloggi avo kana sehuwandu hwezvematongerwo emasidhijhi ezvehutano sepa Facebook. Kugoverana kwemasayiti akaita se Instagram zvakanaka kuti ugovana zvifananidzo zvehupenyu hupi newe lupus. Lupus mapurojekiti epurogiramu ekufambisa mafirimu akaita seLupus kuburikidza neLens inopawo mienzaniso ine simba yekutora upenyu ne lupus mumifananidzo. Twitter uye Facebook chats zvakarongeka kuti ubatane nevanhu vane lupus kune mumwe nemumwe kana kune vashandi vehutano. Lupus-yakabatana hashtag-se #lupus, #lupusawareness, # spoonie-rubatsiro rwevanhu vanowana zvinyorwa zvine chirwere uye chirwere chisingaperi.
Chikamu chakanaka chokugovana paIndaneti ndechokuti iwe unogona kugovana pamusoro pezviitiko zvako, asi haufaniri kushandisa zita rako chaiye. Kuzivikanwa kunogona kubatsira vanhu kugovera vamwe vakatendeseka vasingafungi kuti izvo zvavanotaura zvinogona kuteverwa kwavari. Izvi zvinonyanya kukosha kana vasingatauri vanhu muupenyu hwavo kuti vane lupus, sevashandi pamwe navo nevashandi.
Kunyora uye kugovana nezve lupus kunogona kunzwa kurapwa, uye kunobatsira kune vanhu vanoverenga zvinyorwa zvako. Vaverengi vanganzwa vasisina kurega kana vakaona chimwe chinhu chaunotaura, kana kuti vangawana kunzwisisa zviri nani pane zvakaitika kune mumwe munhu sezvo zvisati zvaitika kune vose. Iyi ruzivo inobatsira vanhu vasina lipus kuti vanzwisise zviri nani chirwere.
Shingairira mune kufamba kweLupus. Lupus anofamba kazhinji anokwidza mari yekutsvaga lupus, iyo inokosha. Asi ivo vanobatsirawo kusimudza ruzivo pamusoro pe lupus. Migwagwa inogona kuunza boka revanhu pamwe chete avo vangave vasingawanzobatanidzi muitiko ye lupus. Vangave vasati vamboziva zvakawanda nezve lupus kana. Mafambi inzira yakanaka yekuchengeta vadiwa venyu vanobatanidzwa munharaunda ye lupus. Kana uri pachiitiko chekufamba, unogona kufamba zvakawanda kana zvishoma sezvaunoda. Mafambirowo maitiro makuru ekubatanidzwa kana kuzvipira nemunharaunda yenyu yeropa. Kana ukasimudza, vabvunze nezvenzira dzaungabetsera nadzo nemafambiro avo.
Kuva Murevereri weHutano hweHutano uye Mari
Ramba uchibatana nemasangano eLupus. Masangano eLupus anowanzoziva nezvemunharaunda, hurumende, uye hurumende yekusimudzira mikana. Taura nehurumende yako yenyika lupus seLupus Research Alliance kana kuti Lupus Foundation yeAmerica kuti uwane kuti masimba anotsigira api anopa. Kana iwe ukasainira mupepanhau ravo, unogona kuwana mishandirapikisi ye email uchikumbira kuti utore matanho. Chiito chingave chiri kuita chimwe chinhu sekutaura nevamiririri vehurumende. Uyewo, taura nemunharaunda yenyu yep lupus. Vangave varikubatanidzwa mukurudzira, pamwe chete. Lupus kukurudzira mishandirapamwe inogona kunge yakabatana nehutano hwehutano kana hutano hwehutano.
World Health Organization inorondedzera hurongwa hwehutano hwehutano se "zvisarudzo, zvirongwa, uye zviito zvinoitwa kuti zvizadzise zvinangwa zvehutano zvakananga mukati mevanhu." Muenzaniso mukuru wehutano hwehutano ndeye Affordable Care Act (ACA; inozivikanwawo se "Obamacare), iyo yakasayirwa mutemo muna 2010. Uye mukati meAACA, pane chinhu chinokosha chinoita kuti zvibvumirwe pamakambani ehutano hwehutano kuti arambe kuvhara vanhu vane mamiriro ezvinhu akambovapo.
Mamiriro akambovapo-aya ari hutano hwakanga huripo usati wasvika pazuva rawakanyorera inshuwalhu yehutano. Mune dzimwe nyika, yaimbova yakaoma kuvanhu vane lupus kuti vawane inshuwarhu yehutano nokuti lupus isati yavapo. Asi, kuva nehutano inshuwarisi yekugoverwa uye kukwanisa kuwana rubatsiro rwezvehutano kunokosha kune vanhu vane lupus. Sezvaunogona kuona, hurongwa hwehutano hwehutano hunogona kunge husina kunaka kana hunoita kuti hutano huve nehutano hwevanhu, ndicho chikonzero mitemo iyi inokosha.
Muenzaniso wehutano wehutano wekuchengetedza hutungamiri uchange uchitungamira nemunharaunda yako wepopus ku Washington DC kuti unosangana nevamiririri vako. Pamisangano iyi, unogona kuvakumbira kuti vatsigire kuwedzera kwehutano hwekutsvakurudza mari. Mari iyo inogona kuve yekutsvakurudza inotsigirwa neNational Institutes of Health kuitira kuti kutsvakurudza kwehupenyu hwehupenyu nehutano hwezvirwere zvakaita se lupus kunogona kupfuurira.
Kutsigira Kurapa-Kwakabatanidzwa
Shandisa mushonga unobatanidzwa. Maererano neSosaiti yekubatanidza mishonga, "Kubatanidzwa kweMishonga yezvirongwa ndeye muenzaniso wekushandira pamwe hutano hunoita kuti hurumende inobatanidzwa nevarwere, vashandi, vanochengetedza, nevamwe kune dzimwe nguva mukurambira kwekutarisira pane zvose zvine chokuita nehutano hwemunhu. nzira yepamutemo yekuchengetedza iyo inobatawo vimbiso yekuvandudza migumisiro, kuderedza zvido zvemishonga, kuwedzera kugutsikana kwevarwere nekuvandudza mari yekutarisira. "
Chimwe chinhu chinokosha chekurapa kunobatanidzwa ndechokuti varwere uye vanachiremba vanofanira kuonekwa sevashandi, kunyanya kana zvasvika pakuita zvisarudzo zvehutano. Kuva neruzivo rwezvinyorwa zvehutano zvemagetsi (EHR) uye kunzwisisa nekuchengetedza kodzero dzako maererano nehutano ruzivo rwehutano hunoenderana neMutemo Wehutano Hwokugadzirisa uye Kuzvidavirira Mutemo (HIPAA) inzira mbiri dzekushandira mishonga inobatanidzwa.
Itaiwo zvidzidzo mukutsvakurudza kwepfungwa. Tsika, tsvakurudzo uye nezvehutano-yakabatana inoitwa nachiremba uye masayendisiti. Pakaitika, nzira chete iyo varwere vanogona kutora chikamu mukutsvakurudza ndezvekuita muchirongwa chechipatara. Iye zvino, nemasangano akafanana neePatient-Centered Outcomes Research Institute (PCORI), varwere vanogona kunge vari chikamu cheimwe rutivi rwekutsvakurudza: Varwere vanogona kutsvaga mibvunzo yekutsvakurudza uye kubatanidzwa mune imwe nhanho yekutsvakurudza. Varwere vanogonawo kushanda kuti vave chikamu chePCORI's advisory panels.
Mifungo Yokupedzisira
Kuzvidzivirira pachako ndiyo inonyanya kukosha uye inodikanwa fomu yekukurudzira. Munhu wose ane lupus kana chero hutano hwemamiriro ezvinhu anofanirwa kuita tsika dzakadaro. Kana iwe usingaiti chimwe chinhu chiita izvi: Dzidzira unyanzvi hwakanaka hwokukurukurirana nachiremba wako, iyo ndiyo nzira yekubatsira kuti uve nechokwadi chokuti uri kutarisira zvakanakisisa zvinoita.
Pane zvakawanda zvingasarudzwa kuti zvibatanidze mukurudzira pane mamwe mazinga. Kana iwe unofarira mukurudzira, sarudza izvo zvinoshanda zvakanakisisa iwe uye mararamiro ako. Kunyangwe zvingave zvichiedza, edza kusatora zvakanyanya pakarepo. Kana zvisina kudaro, iwe uchanetseka. Kugadzirisa simba uye kuneta kunoshanda kumabasa ako anopus, uyewo.
Zvose zvinokurudzira nyaya-kubva pakugoverana nhepfenyuro yehupfambidzani pamusoro pe lupus kuenda kuWashington DC kuti utaure nevamiriri vehurumende. Mazinga ose emupiro anokosha. Hapana chinhu chiduku, saka ita izvo zvinoenderana nehupenyu hwako, mano, uye simba. Inzwi rako rinokosha!