Yile nto ikuyo ukuhlala noLupus

Ukudinwa Isizukulwana esiBonakalayo / iShutterstock

Khawufane ucinge xa ​​usentlungwini kwaye uziva utyumkile kukudinwa ixesha elininzi. Kuhle kakhulu kwizigidi ezili-1.5 zabantu baseMelika abajongana ne-lupus, isifo esizenzekelayo esihlasela isikhumba, amalungu kunye namalungu. Nangona imeko ichaphazela wonke umntu ngokwahlukileyo, uninzi lwezigulana zifumanisa ukuba iimpawu zazo ziyancipha kwaye zihamba: Ngexesha lokuxolelwa, unokuziva uqheleke ngokugqibeleleyo; Ngexesha lokuqhambuka, isigulo sinokubonakala sikhubazekile.

Nabani na onokufumana i-lupus, kodwa ixhaphake kakhulu kwabasetyhini abaneminyaka yobudala bokuzala, ngokwe ILupus Foundation yaseMelika . Sithethile nabantu abasixhenxe abaphila nale meko ingapheliyo ukufumana ukuba baphatha njani.



Iimpawu ezintle / iShutterstock

Ndidiniwe kakhulu ixesha elininzi kangangokuba andinawo amandla okushiya indlu yam. Xa ndisithi ndidiniwe, abantu bacinga ukuba ndililize, kodwa abanalo nofifi lokuba ukudinwa kukubi kangakanani. Kwaye ndiyafumana, 'Kodwa awukhangeleki ugula; ujongeka umkhulu, 'ngalo lonke ixesha. Nangona ugqirha wam wathi kum xa ndiqala ukubonisa ukuba ndicinga ukuba ndine-lupus ngaphambi kokuba kwenziwe uvavanyo.



Nangona ndiziva ndidiniwe ixesha elininzi, ndiye ndizilolonge mihla le. Ndicinga ukuba ndingagula kakhulu ukuba bendingasebenzi ngalo lonke ixesha, kuba umthambo unciphisa ukudumba kwaye wonyusa amajoni akho omzimba. Isusa yonke into kum, kwaye ngezinye iintsuku andazi ukuba ndiza kuyenza njani imithambo, kodwa ndizama ukuhlala ndizolile kwaye ndihambe. '
-Debbie Sperry, oneminyaka engama-55

'Ukuqala kwam ukuya kwiminyaka ye-20, ndandisele ndisiva iintlungu zamalungu nezihlunu.' Intlungu edibeneyo I-GoMixer / iShutterstock

'Ndiqale ukuqaphela iimpawu xa ndandineminyaka engama-21 ubudala ukuya kwiminyaka eyi-20, ndandisele ndisiva iintlungu zamalungu nezihlunu, i-neuropathy, irhashalala, ukuxhuzula, imiba yokuphefumla, inkungu yengqondo, ukukhubazeka kwememori, ukudinwa okungapheliyo kunye nemiba yokwetyisa. Ukuba nazo zonke ezi mpawu ndisemncinci kangaka kwenza kwaba nzima ukwenza imisebenzi yemihla ngemihla. Baqhubekile nokuqina ngelixa ndifunda kwisikolo samabanga aphakamileyo, kwaye bendinexhala lokuba ndizokwazi ukufikelela kwiinjongo zam kwaye ndiphumelele kwikhondo lomsebenzi wam. Uxinzelelo kunye neengcinga zokuzibulala zihlala zibekwa.



athetha ntoni amanani u-777

Ndigqibile ukugqiba kwisikolo samabanga aphakamileyo kunye nokufumana inkosi yam kwintlalontle, kodwa ukusukela ekubeni ne-lupus indenze ndazi ngakumbi ngempilo, itshintshe umkhondo wobomi bam. Kutshanje ndibuyile esikolweni ndaza ndafumana isatifikethi sam sokudibana kwezempilo. Ngoku ndingumqeqeshi wezempilo opheleleyo; Ndinceda abanye boyise imeko yabo engapheliyo besebenzisa ukutya njengamayeza kunye nezinye iindlela zokuphilisa ezinje ngeReiki kunye neendlela zokujonga.
-U-Tara Delgado-Vicedo, oneminyaka engama-35

'Ukuba nenkqubo eyomeleleyo yokuxhasa usapho kunye nabahlobo kubaluleke kakhulu.' Iqela losapho kunye nabahlobo IShtonado / iShutterstock

Kuthathe malunga neminyaka emi-3, imijikelo emithathu ye-chemo, kunye neepilisi ezili-12 ngosuku ukufumana irejimeni esebenzayo. Ngoku ndithatha ii-immunosuppressants kunye ne-anti-inflammatory meds, kodwa ndikwabandakanya amayeza aseMpuma kunyango lwam: ndifumana i-acupuncture, ukuziqhelanisa neyoga, kunye nokusela iti turmeric kunye nejinja.

Ngoku, kwiminyaka emi-5 emva kokuba ndifunyenwe, ndiphantse ukuxolelwa, kwaye ekugqibeleni ndiziva ndikhululekile kulusu lwam. Ukuba nenkqubo eyomeleleyo yokuxhasa usapho kunye nabahlobo kubaluleke kakhulu. Andisivumeli ukuba ndilawulwe sesi sifo, ndiyasilawula. Ngamanye amaxesha ndiyaphumelela, kwaye ngezinye iintsuku, andiphumeleli. Kodwa ekugqibeleni, ndiselapha kwaye ndiyalwa. '
-UVanessa Pellegrini, 39



'Kwakukho amaxesha apho ndandingenawo amandla okubamba abantwana bam.' Abantwana ababini babaleka matoommi / Shutterstock

'Xa abantwana bam bebancinci kwaye bendiza kuba ne-flare-up, kwakunzima. Ukuthabatha ukuya nabo epakini, ukubaleka, ukudlala ibhola, okanye ukukhwela iibhayisikile kunye nabo bekungaphaya kombuzo. Kwakukho amaxesha apho ndandingenawo amandla emzimbeni wokuqhubeka kunye nabo. Ukuba bendinomlilo omkhulu, kuya kufuneka ndilale phantsi iiyure okanye ngamanye amaxesha neentsuku zokuphumla. Ngethamsanqa, ndinomyeni omangalisayo owayehlala eqhubeka apho ndandisilela khona ukuze ndiziphumze ndibuyele empilweni. '
-Lisa Berrio, 53

'Eyona nto ndijolise kuyo kukufumana iimveliso zokhathalelo lolusu ezingayi kubangela ukudumba kwesikhumba.' Inkqubo yolusu etoileark / Shutterstock

'Njengomculi wezinto zokuhombisa onelupus, ndihlala ndibuyela kwiminerali. Izinto zam ekufuneka zibenazo zibandakanya abalungisi bombala ukunceda ngombala kunye ne-hyperpigmentation; i-primer enesikhanyisi esizisa ukukhanya kwisikhumba esimnyama; i-mascara yamaminerali, elungileyo emehlweni abuthathaka; kunye nesiseko kunye ne-moisturizer elayishwe yi-SPF. Ugxininiso lwam lusoloko kukufumana iimveliso zokhathalelo lolusu ezingayi kubangela ukudumba kolusu. ' (Hlamba zonke izithambiso zakho ngorhatya ngalunye Ukucoca ubuso beMvula .)
-UBrandy Gomez-Duplessis, oneminyaka engama-46

ungazisusa njani iimpukane ngaphakathi
'Ukutshintsha indlela enditya ngayo kuye kwandinceda.' Ayinagluten UMonika Bodova / iShutterstock

Emva kokuhlala novavanyo lwe-lupus iminyaka eli-10, ndaye ndagqiba kwelokuba esi sifo asizukuchaza. Ke ebutsheni balo nyaka, ndineminyaka engama-46 ubudala, ndityikitye kukhuphiswano lukaNks. New Jersey-kwaye ndaphumelela. Ndifuna ukwabelana ngebali lam kwaye ndikhuthaze abanye abantu basetyhini abane lupus ukuba baphile. Ukuhlala kum kuthetha ukuzinakekela nokulawula isifo sam.

Ukuqala kwam ukuba ndifunyaniswe, ugqirha wam ekuqaleni wacebisa amayeza e-steroid, kodwa andifuni kuyithatha kuba bendive okuninzi malunga neziphumo ebezingalindelekanga. Sisebenze kunye ukufumana irejimeni yamanye amachiza, kubandakanya i-methotrexate kunye neXeljanz, esebenza kakuhle kum. Ukutshintsha indlela enditya ngayo kuye kwanceda. Mna nomyeni wam sitya kuphela ukutya okune-organic, sinqanda i-gluten, kwaye sisela amanzi amaninzi, ahlala egalelwa ilamuni okanye ivatala. '
-USibrena Stowe-Geraldino, oneminyaka engama-46

'Ukuba awuziva ngcono, khangela enye ingcali ngerheumatologist.' Oogqirha bemi emgceni Intle / Shutterstock

Ukuba awuziva ungcono, fumana enye i-rheumatologist. Ugqirha wam wokuqala wakhawuleza wangena kuvavanyo lwam kwaye wandixelela ukuba kufuneka ndizinyamezele ii-meds azimiselweyo. Ayonyani! Ndafunyaniswa ekuqaleni kwalonyaka kwaye ndandigula ngenene malunga neenyanga ezi-4, kodwa emva kokutshintsha oogqirha nokuzama unyango olwahlukileyo, ekugqibeleni ndiziva ndiziva njengam kwakhona.
-USusan Heins, oneminyaka engama-55