Pankhani ya moyo wanu ndi lupus , ndinu katswiri. Muli ndi chizoloŵezi chokhala ndi vuto la lupus. Ndipo pali njira zambiri zomwe mungagwiritsire ntchito mau anu ndi zomwe mumaphunzira kuti mutsimikizire zosowa zanu komanso zosowa za gulu la lupus.
Cholinga chanu monga wothandizira lupus ndicho kupeza zomwe mukufunikira kuchokera kwa wina amene ali ndi mphamvu yakupatsa zomwe mukufunikira. Izi zikutanthawuza kudziyankhula nokha kwa dokotala wanu kapena kuyenda mudziko la inshuwalansi ya umoyo kapena zopindulitsa zina.
Zingatanthauze kugwiritsa ntchito mau anu kuti muwonetsetse mabungwe omwe akufunikira kuphunzira zambiri za lupus. Kapena kungatanthauze kugwira ntchito ndi akuluakulu a boma kuderalo, boma, kapena federal kuti athandizidwe ndi ndalama zokhudzana ndi thanzi kapena ndondomeko zokhudzana ndi thanzi.
Kulankhula nokha ndi Kukulankhulira pa Mwini Mwini
Mutha kukhala wodziimira nokha m'njira zambiri. Ndipotu, mwinamwake muli kale. Kulankhulana bwino ndi dokotala, mwachitsanzo, ndi njira imodzi yomwe inu mumadziwonekera nokha: Mukufunsa mafunso. Mukutsimikizirani pamene mukuyenera kukhala osasamala mukakhala ndi nkhawa za mankhwala kapena mankhwala.
Pewani msampha wa Maganizo Odwala Odwala. The Good Patient Syndrome ndi pamene munthu akukhulupirira kuti adzalandira chithandizo chamankhwala chabwino ngati ali ovomerezeka. Amakhulupirira kuti kulankhula okha kudzathandiza dokotala wawo kukhala ochepa.
Ndipo ngati adokotala akuwakonda, dokotala wawo adzawapatsa chithandizo chamankhwala cham'munsi. Izi si zoona.
Mudzawonjezera mwayi wanu wopezera chithandizo chamankhwala bwino pakuchita luso loyankhulana bwino ndi madokotala anu, omwe akuphatikizapo kufunsa mafunso, kufotokoza nkhawa iliyonse, ndi kuyankhula zomwe mukusowa.
Nthawi zina kudziteteza kumatanthauza kufunafuna thandizo ndikupeza munthu yemwe angathe kukuthandizani payekha. Mwachitsanzo, mungathe kulankhulana ndi a lupus lanu ngati mukufuna kupeza thandizo la mankhwala kuti muthe kulipira mankhwala anu. Mungathe kuyankhula ndi wogwira ntchito zachipatala ngati mukufunikira kuthandizidwa kumvetsetsa ngongole zachipatala, makamaka ngati mukufuna kuti akuphunzitseni momwe mungatsutsane ndi ndalama kapena kupeza chithandizo chamankhwala kuchipatala. Mungapemphe thandizo kwa bungwe lomwe likuthandizira ndi inshuwalansi ya umoyo kapena kulembetsa kwa sitima.
Kuwonjezeka kwa Kuzindikira Lupus ndi Kukulankhulira Pakati pa Mdera
Kuzindikira za lupus n'kofunika pa zifukwa zingapo. Chofunika kwambiri, akatswiri azachipatala komanso odwala amadziwa za lupus, mofulumira munthu angathe kulandira molondola. Kudziwa zambiri zokhudza lupus, kufufuza komanso lupus kwambiri komweko kudzakhalapo. Ndi chidziwitso cha lupus, kumvetsetsa kwambiri kudzakhalapo pa matendawa ndipo anthu osadziwika komanso osamvetsetseka omwe ali ndi lupus adzamva.
Pezani nawo gulu la Lupus lanu. Mabungwe a Lupus amachita ntchito zambiri kuti amwetse njira zowononga lupus, maphunziro a m'deralo ndi zokopa ndalama, komanso mapulogalamu odziwitsira anthu.
Nthaŵi zambiri amapempha thandizo kwa odzipereka. Lumikizanani ndi lupus lanu lanu kuti mukakhale nawo pazokambirana zawo za lupus kuti mukhale ndi nthawi yeniyeni pa lupus. Izi zidzakuthandizani kukhala wothandizira kudziwa. Komanso funsani iwo kuti mudziwe momwe mungathandizire ndi ntchito yawo. Angathenso kuthandizidwa ndi masewera olimbitsa thupi kapena kuyenda kwawo pachaka, mwachitsanzo.
Gawani zambiri ndi ena za Lupus. Mukawafunsa, mabungwe a lupus amakupatsani zambiri zokhudza maphunziro a lupus omwe mungapatse anthu. Mutha kuchoka ma stacks awa m'malo ngati laibulale, malo a tsitsi, dokotala, malo opembedza, ofesi ya boma, kapena cafe.
Anthu adzawawona, kuwagwira, kuwawerenga, ndi kuphunzira za lupus. Izi zidzathandizanso anthu kuzindikira kuti pali bungwe la lupus lomwe limapereka chithandizo komanso zothandizira.
Musaiwale kuphunzitsa madokotala anu. Sikuti madokotala onse amadziŵa zambiri za lupus, makamaka ngati sagwira ntchito mu rheumatology. Ndicho chifukwa chake kuyesetsa monga Lupus Initiative kulipo. Webusaiti yawo imati, "Zolinga za maphunziro awa [zomwe amapereka kwa akatswiri azachipatala, odwala, ndi othandizira awo] ndi kuwonjezera chiwerengero cha akatswiri azachipatala ndi chidziwitso ndi luso pa matenda ndi matenda a lupus, kuchepetsa kuchepa ndi kusokonezeka , kulimbikitsana kukulumikizana kwambiri ndi anthu odwala matendawa, komanso kuonjezera chiwerengero cha odwala omwe amagwira ntchito mwakhama. "
Ngati mukufuna kudziwa zambiri za momwe mungagwirizanitse akatswiri azaumoyo ku gulu lanu la zaumoyo ndi zothandiza izi, funsani Lupus Initiative.
Konzani zokambirana za Lupus m'dera lanu. Nthaŵi zina anthu omwe ali ndi lupus ndi okondedwa awo amapanga maphunziro a lupus pawokha. Izi ndi zosavuta kuchita ngati pali omvera omwe ali omangika ngati kumsonkhano wa kuntchito, m'kalasi, kapena panthawi yomwe amachitira utumiki pamalo olambirira. Nthawi zambiri zimathandiza ngati zambiri zokhudza lupus zikugwirizana ndi nkhani ya munthu wina. Zizindikiro za Lupus zingakhale zovuta kumvetsa, chifukwa chake kumva wina akulankhula za zomwe akumana nazo kungachititse kuti matendawa asavutike kumvetsa.
Kufalitsa kuzindikira pa intaneti. Intaneti, makamaka zamasewero, ndi chida champhamvu cholera lupus kuzindikira. Anthu amagawana zomwe akumana nazo pamabuku awo kapena monga zosinthika pamasewera ena monga Facebook. Kugawidwa kwa zithunzi monga Instagram ndibwino kugawana zithunzi za momwe moyo ndi lupus umawonekera. Mawebusaiti a Lupus ojambula zithunzi monga Lupus kudzera mu Lens amaperekanso zitsanzo zamphamvu zojambula za moyo ndi lupus. Twitter ndi Facebook mauthenga ali bungwe kuti agwirizane anthu ndi lupus kwa wina ndi mzake kapena kwa akatswiri a zamankhwala. Mafuta a Lupus-onga #lupus, #lupusawareness, # spoonie-kuthandiza anthu kupeza zokhudzana ndi lupus ndi matenda aakulu.
Gawo labwino logawana pa intaneti ndiloti mungathe kugawana nawo zomwe mwakumana nazo, koma simukuyenera kugwiritsa ntchito dzina lanu lenileni. Kudziwika kungathandize anthu kugawana moona mtima popanda kudandaula kuti zomwe akunena zingachokere kwa iwo. Izi ndi zofunika makamaka ngati sanena anthu m'miyoyo yawo kuti ali ndi lupus, monga antchito anzawo ndi olemba ntchito.
Kulemba ndi kugawana za lupus kumatha kumva kuchipatala, ndipo n'kopindulitsa kwa anthu omwe amawerenga zolemba zanu. Owerenga angamve ngati ali okhaokha ngati atadziwa zomwe mumanena, kapena angamvetse bwino zomwe zinachitikira munthu wina chifukwa chakuti sikuti aliyense ali ndi zofanana. Mfundoyi imathandizanso anthu omwe alibe lupus kuti amvetse bwino matendawa.
Gwiritsani ntchito kuyenda kwa Lupus. Kuyenda kwa Lupus kumabweretsa ndalama zambiri pofuna kufufuza lupus, zomwe ndi zofunika. Koma amathandizanso kumvetsetsa za lupus. Maulendo amatha kubweretsa gulu la anthu omwe sangachite nawo mbali ya lupus. Mwina sakanadziŵa kale za lupus. Maulendo ndi njira yabwino yosungira okondedwa anu kumalo a lupus. Pa nthawi ya kuyenda, mukhoza kuyenda mochuluka kapena pang'ono ngati momwe mumafunira. Maulendo ndi njira zabwino zodziphatikizira kapena kudzipereka ndi gulu lanu la lupus. Ngati mwakonzekera, funsani njira zomwe mungathandizire ndi maulendo awo.
Kukhala Woimira Pulogalamu ya Umoyo ndi Zothandizira
Khalani ogwirizana ndi mabungwe a Lupus. Mabungwe a Lupus nthawi zambiri amadziwa zamakhalidwe apamalopo, boma, ndi federal. Lumikizanani ndi mabungwe anu a lupus monga Lupus Research Alliance kapena Lupus Foundation ya America kuti mudziwe mwayi umene amalimbikitsa. Ngati mulembela zolemba zawo, mukhoza kulandira makampu a imelo ndikukupempha kuti muchitepo kanthu. Chinthu chikhoza kuchita chinachake monga kulankhulana ndi oimira boma lanu. Komanso, yambani ndi lupus. Iwo akhoza kukhala nawo mbali mukulankhulira, komanso. Makampu othandizira a Lupus angakhale okhudzana ndi ndondomeko ya zachipatala kapena thandizo la zaumoyo.
Bungwe la World Health Organization limalongosola ndondomeko ya zachipatala monga "zosankha, ndondomeko, ndi zochita zomwe zikuchitidwa kuti zikwaniritse zolinga zina zaumoyo pakati pa anthu." Chitsanzo chachikulu cha ndondomeko ya zachipatala ndi Affordable Care Act (ACA; yomwe imadziwika kuti "Obamacare), yomwe idasindikizidwa kukhala lamulo mu 2010. Ndipo mu ACA, pali chinthu chofunikira chomwe chimapangitsa kuti makampani a inshuwalansi a zaumoyo asavomereze onetsetsani anthu omwe alipo kale.
Zinthu zomwe zakhalapo kale ndizo zaumoyo zomwe zinalipo tsiku lisanafike tsiku la inshuwalansi. M'madera ena, zinali zovuta kuti anthu omwe ali ndi lupus adzipeze inshuwalansi yachuma chifukwa lupus ndiyomwe idalipo kale. Komabe, kukhala ndi inshuwalansi yathanzi komanso kukwanitsa kupeza chithandizo chamankhwala n'kofunika kwa anthu omwe ali ndi lupus. Monga momwe mukuonera, ndondomeko ya zaumoyo ikhoza kukhala ndi zotsatira zolakwika pa thanzi la anthu, chifukwa chake ndondomeko zimenezi ndi zofunika.
Chitsanzo cha chithandizo cha zaumoyo chithandizo cha zaumoyo chikhoza kuyenda ndi a lupus wanu ku Washington DC kukakumana ndi oimira anu. Pamisonkhanoyi, mungawapemphe kuti athandizire kuwonjezeka kwa ndalama zofufuzira zaumoyo. Ndalama zoterozi zikhoza kukhala kafukufuku wothandizidwa ndi a National Institutes of Health kotero kuti kafukufuku wokhudza zaumoyo ndi zaumoyo za matenda monga lupus angapitirize.
Kulimbikitsa Odwala Pakati Pathu
Sakanizani mankhwala othandizira. Malinga ndi Sosaiti Yophatikizapo Mankhwala, "Madokotala Ophatikizidwa ndi chitsanzo cha chithandizo chaumoyo wothandizira omwe akufuna kuti athandizidwe ndi odwala, akatswiri, osowa, ndi ena kupitilizabe chisamaliro pazochitika zonse zokhudzana ndi thanzi la munthu. njira yodalirika yothandizira yomwe imakhala ndi lonjezano lokhazikitsa zotsatira, kuchepetsa zolakwika zachipatala, kuwonjezera kukhutira kwa odwala ndi kukweza mtengo wa chisamaliro. "
Mbali imodzi yofunikira ya mankhwala ophatikizapo ndi kuti odwala ndi madokotala ayenera kuwonedwa ngati abwenzi, makamaka pankhani yokhudza chisankho. Kupeza mauthenga a zaumoyo (EHR) ndi kumvetsetsa ndi kuteteza ufulu wanu wokhudzana ndi zaumoyo zokhudzana ndi zaumoyo zokhudzana ndi Health Insurance Portability Act (HIPAA) ndi njira ziwiri zomwe mungapangire mankhwala othandizira.
Kambani nawo kafukufuku wokhudzana ndi odwala. Kawirikawiri, kafukufuku wamankhwala ndi wathanzi amachitidwa ndi madokotala ndi asayansi. Poyamba, njira yokha imene odwala angathandizire kufufuza ndi kutenga nawo mbali muyeso la kuchipatala. Tsopano, ndi mabungwe ngati Patient-Centered Outcomes Research Institute (PCORI), odwala akhoza kukhala mbali ya kafukufuku wina: Odwala akhoza kukambirana mafunso ochita kafukufuku ndikuchita nawo mbali iliyonse ya kafukufuku. Odwala angagwiritsenso ntchito kukhala mbali ya mapulani a PCORI.
Maganizo Otsiriza
Kukhala wodziimira nokha ndiyo njira yofunikira komanso yofunikira ya kulankhulira. Aliyense yemwe ali ndi matenda a lupus kapena thanzi ayenera kuchita izi. Ngati simukuchita china chilichonse: Chitani luso loyankhulana ndi dokotala wanu, njira yabwino yothandizira kuti mupeze chithandizo chabwino koposa.
Pali zambiri zomwe mungachite kuti mutenge nawo mbali pazinthu zina. Ngati muli ndi chidwi pa ulaliki, sankhani zomwe zimakupindulitsani inu ndi moyo wanu. Ngakhale zingakhale zokopa, yesetsani kuti musamangopitako nthawi imodzi. Apo ayi, mudzavutika maganizo. Kusamalira mphamvu ndi kutopa kumagwira ntchito yanu ya lupus yolandirira, nayenso.
Zolinga zonse-kugawana chithunzi pazolankhulidwe zokhuzana ndi lupus kuti mupite ku Washington DC kuti mukalankhule ndi oimira boma lanu. Mipingo yonseyi ndi yofunikira. Palibe chomwe chiri chochepa, choncho chitani zomwe zikugwirizana kwambiri ndi moyo wanu, luso lanu, ndi mphamvu zanu. Mawu anu ndi ofunika!