Kurarama neLupus Kunoda rubatsiro
Imwe yenhanho dzokutanga mukubata ne lupus kuongorora ndeyekuti unoziva kuti iwe hausi woga - kuti pane vamwe vanhu kunze uko vanoenda kune chimwe chinhu chimwe chete. Kugovera nhau nekupa mazano kuburikidza nemapoka ekutsigira, zvose mu-munhu uye paIndaneti, ndeimwe nzira iyo vazhinji vevaya vanobatwa ne lupus kubata nezuva nezuva kurwisana kunosangana nehosha.
Tariro yedu pane About Lupus ndeyokupa rubatsiro mune chero nzira yatinokwanisa. Ndicho chikonzero tinovimba kuti nekuonekwa kwevakadzi vakashinga nevarume vanotambura ne lupus, tichapa mumwe munhu kunze kwave achangobva kuongororwa, ane nguva yakaoma ine chirwere chake, kana zvichida anoda kungoziva kuti pane mumwe munhu kunze uko anonzwisisa izvo zvavari kutarisana nacho, kusimudzira ivo vanoda.
Mumwe munhu akadaro angakubatsira ndiAlicia Springgate, nyika ye Washington inogara uye Las Vegas munharaunda uyo akawanikwa ane lupus mushure mokudzokorora zvinyorwa zvemapapu), kupisa kwemapapu uye kusagadzikana kwemwoyo.
Ndakataura naCheggate pamusoro pezvakaitika kwaari.
Pamusoro peLupus (LUP): Wakaongororwa sei?
Alicia Springgate (AS): Pane imwe nguva pandakaiswa muI ICU, nyanzvi yangu yemapapu yakaziva kuti zviratidzo zvangu [zvino], uye zviratidzo zvandakaona munguva yakapfuura, zvichida zvakaguma ne systemic lupus erythematosus (SLE) .
Yese miedzo yakadzoka inofadza kwe lupus. Mushure mekunge ndaongororwa, ndakakurumidza kurapwa nesteroids, izvo zvakavandudza mamiriro angu nekukurumidza.
LUP: Chii chakafamba kuburikidza nemusoro wako pawakaona?
AS: Hapana aizonditaurira kuti chii chii kana kuti chii chaifanira kutarisira, uye saka ndaitya zvikuru uye ndaiziva kuti inofanira kuva yakaipa.
Zvadaro ndakazviongorora zvangu, uye zvigumisiro zvakandivhundutsa: Ndakaona kuti ndaiva ne9 kubva kune 11 zviratidzo zvinoshandiswa kuongorora chirwere chacho. Ini ndakazoona kuti ndine utano hwakakomba, hunotyisa hupenyu hwechirwere.
LUP: Ndeupi rudzi rwekusarudzwa kwawakapiwa iwe, mishonga, pamusoro pemishonga ?
AS: Pakutanga, steroids , anti-inflammatories , uye, pakupedzisira, chemotherapy mishonga, kusanganisira Imuran (azathioprine) uye zvino CellCept (mycophenolate mofetil) .
LUP: Mhando ipi yekurapa yawakatsvaka?
AS: Zvose zvakapiwa. Ndakazopedzisira ndava nemigumisiro yakawandisa, ndaifanira kuwedzera mishonga yangu yekurwisa iyo migumisiro. [Ndakapfuurira] zvinhu zvakadai semapiritsi emwoyo, ropa remishonga mishonga, mishonga yekurwadziwa, kupora mishonga. Iye zvino, urongwa huri kusvika mishonga makumi mana nemasere pazuva.
LUP: Chii chakakushamisa iwe zvikuru nezve lupus?
AS: Ndihwo chirwere chinoparadza chinokanganisa zvikamu zvose zvehupenyu hwako.
LUP: Wakawana chero rubatsiro munharaunda yako kana paIndaneti yakabatsira here? Kana zvakadaro, yakakubatsira sei?
AS: Lupus Foundation yeAmerica (LFA) yakabatsira zvikuru sezvo yakandiita kuti ndizive kutsvakurudza kunopfuurira, zvingasarudzwa zvandinogona kurapwa, izvo zvinowanikwa nevamwe, uye kuti ndingabatsira sei vamwe.
LUP: Mhuri yako inoziva here nezvekuongorora kwako? Ndeipi nzira dzave dzakabatsira?
AS: Mhuri yangu yakabatsira zvikuru, kubvira pazuva randakawana. Vakaenda paIndaneti, vakazviongorora, uye vakatenga mishonga yangu apo ndakanga ndisingakwanisi kutenga. Vakandidzinga kuCalifornia saka ndaigona kurapwa pazvipatara zvakanakisisa zviripo uye ndanga ndiri vatarisiri vangu kwemakore matatu apfuura. Ivo ndiwo mhepo yangu yeupenyu.
(Mupepeti Wecherechedzo: Amai vaAlicia vanotsanangura kuti chii chakafanana kuva nhengo yemhuri yemunhu ane lupus papeji 2.)
LUP: Ndeapi mazano aungapa mumwe munhu aingoziva kuti ane lupus?
AS: Zvidzivirire nezvose zvitsvakurudzo zvaunogona kuunganidza pamwe nemishonga inowanikwa ikozvino. Kuita tsvakurudzo, kudzidzisa ini, yakanga iri nyasha yangu inoponesa - kusvikira ndawana chiremba uyo akanga akatendeseka uye ane tsitsi. Akange asingatyi kubvunza mibvunzo yevamwe vadzidzisi vezvehutano apo chimwe chinhu pamusoro pehutano hwangu chakakwira uye iye akanga asingazivi nezvazvo.
Uyewo, tsvaka kutsigirwa mupfungwa, kana iri kuburikidza nemumwe mushandi ane chiremba, boka rekutsigira kereke, kana boka rekutsigira kunzvimbo. Handifungi kuti ndingadai ndapedza kuburikidza dai zvisiri zvekutsigirwa.
Alicia aiva nerombo kuti ave nerutsigiro rwemhuri yake, akatungamirirwa naamai vake, Linda Springgate. Takabvunza Linda kuti zvakaitika sei paakaona kuti mwanasikana wake ane lupus.
LUP: Wakawana sei kuti mwanasikana wako ane lupus?
Linda Springgate (LS): Akandiudza paakanga ari muchipatara achirapwa nokuda kwekusagadzikana kwemwoyo mwoyo.
LUP: Waiita sei?
LS: Kutya pakutanga, saka zvose zvakagadziriswa patakatsvaga chirwere ichi.
LUP: Chii chakakushamisa iwe pamusoro peAlicia's lupus?
LS: Zvakashungurudza sei [kune] mhuri yedu yese uye kuti yakaswededza sei pamwe chete.
LUP: Munofunga kuti iwe wakamubatsira sei? LS: Takamira naye kubva pakutanga, tichienda naye kuvadzidzisi kunze kwehurumende, tichimutsigira nemari, uye pakupedzisira, kumuchengeta nemwanakomana wake wechidiki kwemakore matatu apfuura.
LUP: Ndeapi nzvimbo dzekutsigira iwe uchatarisa mune ramangwana?
LS: Kusungirira parutivi rwake kuburikidza nekufamba kwezvipatara uye kumubatsira kuti apinde mumanzwiro ekumanikidzwa kwepachirwere ichi.