Ukubhekana neLupus Kudinga ukusekelwa
Enye yezinyathelo zokuqala ekubhekaneni nokuxilongwa kwe-lupus uqaphela ukuthi awuwedwa - ukuthi kukhona abanye abantu abaphuma ngaphandle kokunye okufanayo. Ukuxoxa izindaba nokunikeza izeluleko ngamaqembu okusekela, kokubili kumuntu kanye naku-intanethi, yindlela eyodwa abaningi balabo abathintekayo ne-lupus abhekane nezinkinga zansuku zonke ezihambisana nesifo.
Ithemba lethu ku-About Lupus ukunikeza ukwesekwa nganoma iyiphi indlela esingayenza. Yingakho sithemba ukuthi ngokubheka abesifazane nabesilisa abanesibindi abaphethwe i-lupus, sizokhipha umuntu ovele esanda kutholakala, unomzuzu onzima ngesifo sakhe, noma mhlawumbe ufuna nje ukwazi ukuthi kukhona omunye ngaphandle lapho oqonda lokho ababhekana nakho, ukuphakama abakudinga.
Omunye umuntu onjalo ongakusiza u-Alicia Springgate, ohlala eWashington kanye nomuntu waseLas Vegas otholwe ukuthi une-lupus ngemva kokuphindaphinda okuvela ku-pleurisy (ukuvuvukala kwamaphaphu), ukuphuphuma kwamaphaphu nokuhluleka kwenhliziyo.
Ngikhuluma noSparkgate mayelana nokuhlangenwe nakho kwakhe.
Mayelana ne-Lupus (LUP): Utholiwe kanjani?
U-Alicia Springgate (AS): Ngesikhathi ngifakwe ku-ICU, isazi sami sephaphu saqaphela ukuthi izimpawu zami [zamanje], kanye nezimpawu engazibonela esikhathini esidlule, cishe kwakuwumphumela we- systemic lupus erythematosus (SLE) .
Zonke izivivinyo zibuyele zitholakale nge-lupus. Ngemva kokuxilongwa, ngokushesha ngiphathwa nge-steroids, eyathuthukisa isimo sami ngokushesha.
I-LUP: Yini eyahamba ngekhanda lakho uma uthola?
NJENGOBA: Akekho ongangitshela ukuthi yiliphi lupus noma yini engingayilindela, ngakho-ke ngangesaba kakhulu futhi ngazi ukuthi kufanele kube kubi.
Ngabe ngenza ucwaningo lwami, futhi imiphumela yangesaba: Ngaqaphela ukuthi nginezinkinga ezingu-9 zezingu-11 ezazisetshenziselwa ukuxilonga lesi sifo. Kamuva ngathola ukuthi nginesimo esibi kakhulu, esongela impilo yesifo.
I-LUP: Yiluphi uhlobo lwezinketho olunikezwa kuwe, ngokwemithi, ngokuphathelene nokwelashwa ?
NJENGOBA: Okokuqala, i- steroids , i- anti-inflammatories , futhi, ekugcineni, izidakamizwa zamakhemikhali, okufaka i- Imuran (azathioprin) futhi manje i- CellCept (mycophenolate mofetil) .
I-LUP: Yiluphi uhlobo lwezokwelapha owalandela?
NJENGOBA: Yonke into eyanikezwa. Ekugcineni ngathola imiphumela emibi kakhulu, kwakudingeka ngikhulise imithi yami yokulwa nalawo miphumela emibi. [Ngaqhubeka] izinto ezifana namaphilisi enhliziyo, imishanguzo yegazi, imithi yokwelashwa, imithi yokwamukela. Manje, loluhlu lufinyelela kumithi angu-28 ngosuku.
LUP: Yini eyamangalisa kakhulu mayelana ne-lupus?
NJENGOBA: Kuyinto isifo esiyingozi kakhulu esithinta zonke izingxenye zokuphila kwakho.
I-LUP: Uthole noma yikuphi ukusekelwa emphakathini wakho noma ku-inthanethi okuye kwaba usizo? Uma kunjalo, ikusizile kanjani?
NJENGOBA: I-Lupus Foundation of America (LFA) isize usizo olukhulu kakhulu njengoba ingenze ngazi ukuthi ngiphenyo oluqhubekayo, yiziphi izinketho engingase ngibe nazo zokwelashwa, ukuthi yini abanye ababhekana nayo, nokuthi ngingabasiza kanjani abanye.
I-LUP: Ingabe umndeni wakho uyazi ukuthi uyazihlola? Ziye zaba usizo ngaziphi izindlela?
NJENGOBA: Umndeni wami ube usizo olukhulu, kusukela ngosuku engangithola ngalo. Bahamba nge-intanethi, baqhuba ucwaningo lwabo, futhi bathenga imithi yami lapho bengingakwazi ukuyikhokhela. Bangiyisa eCalifornia ukuze ngiphathwe ezibhedlela ezinhle kakhulu futhi ngibe ngabanakekeli bami eminyakeni emithathu edlule. Ziyizintambo zami zokuphila.
(Inothi Lomhleli: Umama ka-Alicia uchaza ukuthi uthanda ukuthini ukuba yilungu lomndeni lomuntu one-lupus ekhasini 2.)
I-LUP: Yisiphi iseluleko ongayinikeza umuntu osanda nje ukuthola ukuthi une-lupus?
NJENGOBA: Zivikele yonke ucwaningo ongayibuthela kanye nemithi yokwelapha yamanje enikezwayo. Ukucwaninga, ukuzifundisa, kwakungumusa wami wokusindisa - ngize ngithole udokotela othembekile nozwela. Futhi wayengesabi ukubuza imibuzo yabanye ochwepheshe bezokwelapha lapho kukhona okuthile okuphathelene nokugula kwami okukhulile futhi engazi kangako.
Futhi, thola ukusekelwa ngokomzwelo, kungakhathaliseki ukuthi kungumuthi ohlinzekwe yilayisensi, iqembu lokusekela esontweni, noma iqembu lokusekela lendawo. Angicabangi ukuthi ngabe ngabe ngiyifinyelele uma ngabe kwakungeyona yenkxaso.
U-Alicia wayenenhlanhla yokusekelwa ngumndeni wakhe, eholwa unina, uLinda Springgate. Sambuza uLinda ukuthi uhlangenwe nakho kwakhe lapho ethola ukuthi indodakazi yakhe ine-lupus.
LUP: Uthola kanjani ukuthi indodakazi yakho ine-lupus?
ULinda Springgate (LS): Wangitshela ngenkathi esesibhedlela ephathwa ngokuhluleka kwenhliziyo.
LUP: Wathini ukuphendula kwakho?
LS: Shock ekuqaleni, ngakho konke kwaqondakala lapho siphenyisisa lesi sifo.
LUP: Yini eyakumangalisa kakhulu mayelana ne-Alicia's lupus?
I-LS: Yeka indlela okhathaza ngayo [emndenini wethu wonke] nokuthi usondelene kangakanani nathi.
I-LUP: Ucabanga ngaziphi izindlela ukuthi umsize kakhulu kuye? ULS: Simi kuye kusukela ekuqaleni, sithatha ochwepheshe bezezifundazwe, sisekela ngemali, futhi ekugcineni, simnakekela yena nendodana yakhe esebekhulile eminyakeni emithathu edlule.
LUP: Yiziphi izindawo zokusekela oyozigxila esikhathini esizayo?
I-LS: Ukunamathela eceleni kwayo yonke indlela yokuhamba esibhedlela futhi kumsize ukuba aphumelele ekuhluphekeni nasekuhluphekeni kwalesi sifo.