Kulimbana ndi Lupus kumafuna thandizo
Imodzi mwa njira zoyamba zothetsera matenda a lupus ndikuzindikira kuti simuli nokha - kuti pali anthu ena kunja komwe akudutsa chinthu chimodzimodzi. Kugawana nkhani ndi kupereka uphungu kudzera m'magulu othandizira, payekha payekha komanso pa intaneti, ndi njira imodzi imene ambiri omwe amavutika ndi lupus amakumana ndi mavuto omwe amakumana nawo tsiku lililonse.
Chiyembekezo chathu pa Lupus ndi kupereka thandizo m'njira iliyonse yomwe tingathe. Ndicho chifukwa chake tikuyembekeza kuti poona kuwala kwa amayi ndi abambo olimba mtima omwe ali ndi lupus, timupatsa wina kunja komwe adatulukira kumene, akukhala ndi nthawi yovuta ndi matenda awo, kapena mwina akufuna kudziwa kuti alipo wina kunja komwe amamvetsa zomwe akukumana nazo, kukweza komwe akufunikira.
Munthu wina wotere amene angakuthandizeni ndi Alicia Springgate, wa ku Washington komwe amakhala ndi Las Vegas mbadwa yomwe inapezeka ndi lupus pambuyo pafupipafupi ya mapupa, kupweteka kwa mapapo ndi kulephera kwa mtima.
Ndinayankhula ndi Springgate za zochitika zake.
About Lupus (LUP): Munapezeka bwanji?
Alicia Springgate (AS): Nditaikidwa ku ICU, katswiri wanga wamapapo anazindikira kuti zizindikiro zanga [zamakono], komanso zizindikilo zomwe ndakhala nazo kale, zikhoza kukhala zotsatira za lupus erythematosus (SLE) .
Mayesero onse adabwereranso ndi chithandizo cha lupus. Nditaphunzira matendawa, nthawi yomweyo ndinachiritsidwa ndi steroids, zomwe zinandichititsa kuti ndizikhala bwino mwamsanga.
LUP: Nchiani chinadutsa pamutu mwanu pamene mwapeza?
AS: Palibe amene angandiuze kuti lupus anali kapena chiyani, ndipo ndikuchita mantha ndikudziwa kuti ziyenera kukhala zoipa.
Kenaka ndinapanga kafukufuku wanga, ndipo zotsatira zake zinandichititsa mantha: Ndinazindikira kuti ndinali ndi 9 mwazizindikiro 11 zomwe zimagwiritsidwa ntchito kuti ndizindikire matenda. Kenaka ndinapeza kuti ndili ndi matenda aakulu kwambiri, omwe amawopsa kwambiri.
LUP: Ndi mitundu yanji ya zosankha zomwe munapatsidwa kwa inu, zamankhwala, pankhani ya chithandizo ?
AS: Poyambirira, steroids , anti-inflammatories , ndipo pamapeto pake, mankhwala a chemotherapy, kuphatikizapo Imuran (azathioprine) komanso tsopano CellCept (mycophenolate mofetil) .
LUP: Ndi mtundu wanji wa chithandizo chimene inu mwatsatira?
AS: Zonse zomwe zinaperekedwa. Pambuyo pake ndinakhala ndi zotsatira zambiri, ndinafunika kuwonjezera mankhwala anga kuthana ndi zotsatira zake. [Ndinapitiriza] zinthu monga mapiritsi a mtima, mankhwala a magazi, mankhwala opweteka, mankhwala opweteka. Tsopano, mndandanda uli pafupifupi pafupifupi 28 mankhwala tsiku.
LUP: N'chiyani chakudabwitsa kwambiri pa lupus?
MFUNDO ZOTHANDIZA: Ndi matenda opweteka kwambiri omwe amakhudza mbali zonse za moyo wanu.
LUP: Kodi mwapeza thandizo lililonse m'dera lanu kapena pa intaneti zomwe zakhala zothandiza? Ngati ndi choncho, zakuthandizani bwanji?
AS: Lupus Foundation of America (LFA) yathandizira kwambiri chifukwa chazindikiritsa za kafukufuku wopitilira, zomwe ndingakhale nazo pa chithandizo, zomwe ena akukumana nazo, ndi momwe ndingathandizire ena.
LUP: Kodi banja lanu likudziwa kuti mumadziwa? Kodi akhala akuthandiza m'njira zotani?
AS: Banja langa lapindulitsa kwambiri, kuyambira tsiku limene ndinapezeka. Anapita pa intaneti, anafufuza okha, ndipo adagula mankhwala anga pamene sindinathe kulipira. Anandipititsa ku California kuti ndikaperekedwe kuchipatala chabwino kwambiri ndipo ndakhala ndikusamalira zaka zitatu zapitazo. Ndiwo mzere wanga wa moyo.
(Mkonzi wa Note: Amayi a Alicia akulongosola zomwe zimakhala kukhala membala wa munthu yemwe ali ndi lupus patsamba 2.)
LUP: Ndi malangizo ati omwe mungapatse wina yemwe anangozindikira kuti ali ndi lupus?
AS: Gwiritsani ntchito kafukufuku omwe mungathe kusonkhanitsa komanso mankhwala omwe alipo tsopano. Kufufuza, kudziphunzitsa ndekha, kunali chisomo changa chopulumutsa - mpaka ndinapeza dokotala yemwe anali woona mtima ndi wachifundo. Iye sankakhala woopa kufunsa mafunso a akatswiri ena azachipatala pamene chinachake chokhudza matenda anga chinakwera ndipo iye sankidziwa.
Komanso, funsani maganizo, kaya kudzera mwa wothandizidwa ndi chilolezo, gulu lothandizira mpingo, kapena gulu lothandizira. Sindingaganize kuti ndikadapyolapo pakanakhala kuti sizinali zothandizira.
Alicia anali ndi mwayi wothandizira banja lake, motsogoleredwa ndi amayi ake, Linda Springgate. Tinamufunsa Linda zomwe zinamuchitikira iye atazindikira kuti mwana wake ali ndi lupus.
LUP: Munapeza bwanji kuti mwana wanu ali ndi lupus?
Linda Springgate (LS): Anandiuza pamene anali kuchipatala kuti athandizidwe ndi mtima wa congestive.
LUP: Kodi mumayankha chiyani?
LS: Chowopsya poyamba, ndiye kuti zonsezi zinakhala zomveka pamene tafufuza za matendawa.
LUP: Kodi chakudabwitsa bwanji za Alicia's lupus?
LS: Zimasokoneza bwanji [banja lathu lonse] komanso momwe zimakhalira pafupi.
LUP: Mukuganiza kuti mumamuthandiza bwanji? LS: Ife taima naye kuyambira pachiyambi, kumutengera kwa akatswiri kunja kwa boma, kumuthandiza iye ndalama, ndipo potsiriza, kumusamalira iye ndi mwana wake wamwamuna kwa zaka zitatu zapitazo.
LUP: Ndi mbali ziti zothandizira zomwe mukuziganizira mtsogolomu?
LS: Kumamatira mbali yake kudutsa maulendo onse a chipatala ndi kumuthandiza kuti adzidwe bwino ndi matendawa.