Nā pilikia pili tissue: ʻuelelo kaʻu kauka ʻaʻohe aʻu EDS. Ano?

Anter

• Akā eia ka mea: ʻo ka mea pūʻiwa aʻu i aʻo ai ʻo ka loaʻa ʻole o ke kōkua ʻeha maikaʻi loa e ka lāʻau.

Makemake au i kahi hopena maikaʻi no ka mea makemake wau i nā pane.

Welina mai i nā pilikia tissue, kahi kolamu aʻoaʻo mai ka comedian ʻo Ash Fisher e pili ana i nā maʻi pili pili, Ehlers-Danlos syndrome (EDS), a me nā ʻeha maʻi ʻē aʻe. He EDS ko Ash a he poli loa kona; ʻo ka loaʻa ʻana o kahi kolamu aʻoaʻo, he moemoeā ia. Loaʻa kāu nīnau iā Ash? E kiʻi aku ma o Twitter a me Instagram @AshFisherHaha.

Nā pilikia pili kele,

Ua ʻike ʻia kuʻu hoaaloha me EDS i kēia manawa. ʻAʻole wau i lohe e pili ana, akā i ka heluhelu ʻana i ia mea, me he mea lā ke heluhelu nei wau e pili ana i koʻu ola ponoʻī. Ua maʻalahi wau a luhi hoʻi i ka nui, a ua ʻeha pū me aʻu ke hoʻomanaʻo wau.

Ua kamaʻilio wau i kaʻu kauka mālama mua a ua kuhikuhi ʻo ia iaʻu i ka genistist. Ma hope o ke kali ʻana o 2 mau mahina, ua loaʻa iaʻu kahi manawa. A ua ʻōlelo ʻo ia ʻaʻohe aʻu EDS. Ua kaumaha wau. ʻAʻole wau makemake e maʻi, makemake wau i kahi pane i ke kumu o koʻu maʻi! Kōkua! He aha kaʻu e hana ai ma hope? Pehea wau e neʻe ai i mua?

- {textend} ʻAʻole paha ia he Zebra

E ka mea aloha, ʻaʻole he Zebra,

ʻIke maikaʻi wau i ka pule ʻana, ka makemake ʻana, a me ka manaʻolana e hoʻi maikaʻi kahi hōʻike olakino. Ua makaʻu wau i hana i kahi hypochondriac ʻimi ʻimi.

Akā laila ua ʻike wau makemake wau i kahi hopena maikaʻi no ka mea makemake wau pane.

He 32 mau makahiki ka lōʻihi o koʻu loaʻa ʻana i kaʻu ʻike ʻo EDS a huhū iki wau i ka ʻike ʻole o kekahi kauka.

Ua hoʻi mau ka maikaʻi ʻole o kaʻu hana keʻena hana - {textend} ʻaʻole ma muli o ka ʻāhewa ʻana, akā no ka mea ʻaʻole hiki i ka hana ʻana i ke koko maʻamau ke ʻike i nā ʻano maʻi o ka pilina.

ʻIke wau ua manaʻo ʻoe ʻo EDS ka pane a e maʻalahi nā mea mai aneʻi. E kala mai iaʻu no kou pā ʻana i kahi ālai alanui.

Akā e ʻae ʻoe iaʻu e hāʻawi iā ʻoe i kahi kuʻina ʻē aʻe: ʻo kēia nūhou maikaʻi. ʻAʻohe ou EDS! ʻO kēlā kahi hōʻailona hou aʻe āu i hoʻopau ai, a hiki iā ʻoe ke hoʻolauleʻa ʻaʻohe ou ʻano maʻi maʻi mau.

No laila he aha kāu e hana ai ma hope? Paipai wau iā ʻoe e hoʻonohonoho i kahi manawa me kāu kauka mālama mua.

Ma mua o kou hele ʻana i loko, e hana i kahi papa inoa o nā mea āpau āu e makemake ai e kamaʻilio. A laila koho i kāu mau hopohopo nui ʻekolu a e hōʻoia e pane i kēlā mau mea.

Inā loaʻa ka manawa, e kamaʻilio e pili ana i nā mea āpau āpau. E hoʻopono me kāu kauka e pili ana i kāu makaʻu, kou huhū, kou ʻeha, a me kāu mau hōʻailona. E noi maoli no kahi mea i hāʻawi ʻia i ka lāʻau hoʻoikaika kino. E ʻike i nā mea ʻē aʻe āna i ʻōlelo ai.

Akā eia ka mea: ʻo ka mea pūʻiwa aʻu i aʻo ai ʻo ka loaʻa ʻole o ke kōkua ʻeha maikaʻi loa e ka lāʻau.

A ʻike wau i kēlā suuuuucks. A inā he haʻahaʻa ia, e kala mai iaʻu, a ʻoluʻolu e hoʻomanawanui iaʻu.

I ka manawa i loiloi ʻia ai wau me EDS, maopopo koke ka hapa nui o koʻu ola. I kaʻu hana ʻana e hana i kēia ʻike hou, ua lilo wau i mea nui loa.

Ua heluhelu au i nā memo mai nā pūʻulu Facebook EDS i kēlā me kēia lā. Ua loaʻa mau iaʻu nā hōʻike e pili ana kēia lā i koʻu mōʻaukala a i ʻole kēlā hoʻokahi ʻeha a i ʻole kēlā ʻeha ʻē aʻe, auwē! ʻO EDS kēlā! ʻO EDS wale nō!

Akā ʻo ka mea, ʻaʻole ia ʻo EDS āpau. ʻOiai mahalo wau i ka ʻike ʻana i ke kumu o ke ola o nā ʻōuli ʻōuli, ʻaʻole ʻo EDS koʻu ʻano wehewehe.

I kekahi manawa ʻeha koʻu ʻāʻī, ʻaʻole mai EDS, akā no ke kūlou mau ʻana e nānā i kaʻu kelepona - {textend} e like me ka ʻeha o ka ʻāʻī āpau no ka mea ke piʻo mau nei lākou e nānā i kā lākou kelepona.

Minamina, i kekahi manawa ʻaʻole loa ʻoe e loaʻa i kahi hōʻailona. Manaʻo wau ʻo ia paha kekahi o kāu makaʻu nui loa, akā e hoʻolohe iaʻu!

Ke ʻaʻa aku nei wau iā ʻoe e kau i ka lāʻau a me ka hoʻōla ma mua o ke kui ʻana i ka mea pololei ʻole. ʻAʻole paha ʻoe e ʻike. Akā nui nā mea hiki iā ʻoe ke hana, iā ʻoe iho, ma ka home, me nā hoaaloha a i ʻole hoa.

Ua haʻi mai kaʻu orthopedist akamai loa iaʻu ʻo ka "kumu" o ka ʻeha ʻaʻole nui e like me "pehea e mālama ai."

Hiki iā ʻoe ke manaʻo maikaʻi a ʻoi aku ka ikaika ʻoiai ʻoe ʻaʻole ʻoe e ʻike kikoʻī i ke kumu o kāu mau hōʻailona. Nui loa ke kōkua ma laila a manaʻoʻiʻo maoli wau hiki iā ʻoe ke hoʻomaka me ka maikaʻi i kēia manawa koke.

Paipai nui wau i ka polokalamu Curable, kahi e hoʻohana ai i nā ʻenehana like ʻole, e like me ke ʻano o ka behavioral therapy, e mālama ai i ka ʻeha mau. Ua kānalua wau akā ua kahaha wau i ka mea aʻu i aʻo ai e pili ana i kahi e hele mai ai kaʻeha a pehea e hiki ai iaʻu ke hoʻokele maoli me ka hoʻohana wale i koʻu manaʻo. E hoʻāʻo.

Ua aʻo mai ʻo Curable iaʻu i ke kōkua pinepine ʻole ʻana o ke kiʻi diagnostics ma ka hōʻike ʻana i ke kumu o ka ʻeha a ʻo ka alualu ʻana i nā diagnose a me nā kumu e kōkua ʻole ai i kou ʻeha. Paipai wau iā ʻoe e hoʻāʻo. A inā ʻoe e inaina iā ia, e ʻoluʻolu e leka uila iaʻu e walaʻau e pili ana ia.

I kēia manawa, e nānā i ka mea a mākou e ʻike nei e hana nei no ka ʻeha mau: ka hoʻoikaika kino mau, ka hoʻoikaika ʻana i nāʻiʻo, PT, ka hiamoe mau ʻana, ka ʻai ʻana i nā meaʻai maikaʻi, a me ka inu ʻana i ka wai he nui.

E hoʻi i nā kumu: neʻe, hiamoe, mālama ʻana i kou kino e like me ka mea waiwai a make (ʻo ia ʻelua).

E hoʻomau hou iaʻu. Lana koʻu manaʻo e loaʻa koke iā ʻoe kahi ʻoluʻolu.

ʻO Wobbly,

ʻAla

ʻO Ash Fisher kahi mea kākau a mea hoʻohenehene e noho nei me hypermobile Ehlers-Danlos maʻi maʻi. Ke loaʻa ʻole kahi wobbly-pēpē deer-lā, ke hele wāwae nei ʻo ia me kāna corgi, ʻo Vincent. Noho ʻo ia ma ʻOakland. E aʻo hou e pili ana iā ia ma luna ona pūnaewele.