{"id":14078,"date":"2020-01-07T20:24:23","date_gmt":"2020-01-08T01:24:23","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=14078"},"modified":"2023-12-20T05:52:20","modified_gmt":"2023-12-20T10:52:20","slug":"happy-35th-birthday-emily","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/happy-35th-birthday-emily\/","title":{"rendered":"35. do\u011fum g\u00fcn\u00fcn kutlu olsun, Emily!"},"content":{"rendered":"

Bug\u00fcn\u00fcn konuk blog yazar\u0131, de\u011ferli EE Y\u00f6netim Kurulu \u00dcyemiz ve Emily'nin hayat boyu en iyi arkada\u015f\u0131 olan Jessica Rutstein Lazarus, yaz\u0131s\u0131yla #35for35 kampanyam\u0131z\u0131 ve sevgili Emily'nin do\u011fum g\u00fcn\u00fc kutlamas\u0131n\u0131 resmen ba\u015flat\u0131yor.<\/em><\/p>\n

Beni tan\u0131mayanlar i\u00e7in s\u00f6yleyeyim, benim ad\u0131m Jess. Emily'nin ortaokuldan beri en iyi arkada\u015flar\u0131ndan biriyim ve ayn\u0131 zamanda EE Y\u00f6netim Kurulu'nda yer alma onuruna sahibim. Bu y\u0131l, Emily'nin 35. do\u011fum g\u00fcn\u00fc \u015ferefine kampanyam\u0131z\u0131 ba\u015flatma gelene\u011fimi s\u00fcrd\u00fcrece\u011fim ve y\u0131ll\u0131k kampanyam\u0131z\u0131 etkili bir \u015fekilde kapataca\u011f\u0131m. <\/p>\n

\"\"<\/p>\n

E\u011fer 2019 takvimime g\u00f6z atacak olsayd\u0131n\u0131z muhtemelen Emily ve benim birbirimizi olduk\u00e7a s\u0131k g\u00f6rd\u00fc\u011f\u00fcm\u00fcz\u00fc d\u00fc\u015f\u00fcn\u00fcrd\u00fcn\u00fcz. Sahiplerinin Emily'yi tan\u0131d\u0131\u011f\u0131 ve her zamanki sipari\u015fini ezberledi\u011fi yerel Japon restoran\u0131m\u0131zda ak\u015fam yemekleri i\u00e7in planlar vard\u0131; ikimizin de tatl\u0131ya olan d\u00fc\u015fk\u00fcnl\u00fc\u011f\u00fcm\u00fcz\u00fc dizginlemeye \u00e7al\u0131\u015faca\u011f\u0131m\u0131z donmu\u015f yo\u011furt i\u00e7in; ya da bir ebeveyn taraf\u0131ndan b\u0131rak\u0131lmam\u0131z gereken g\u00fcnlerde, ortaokuldan beri birbirimizle bulu\u015ftu\u011fumuz mahalle Starbucks'\u0131nda kahve i\u00e7mek i\u00e7in.<\/p>\n

Ancak ger\u00e7ek \u015fu ki, takvimdeki bu tarihler umutlu olanlar, iyimser planlar ve arzu edilen bulu\u015fmalard\u0131. Bunlar\u0131n \u00e7o\u011fu ger\u00e7ekle\u015fmedi ve bunun nedeni isteksizlik ya da \u00e7abas\u0131zl\u0131k de\u011fildi.<\/p>\n

\u0130ster yorgunluk, ister bo\u011fazda bir g\u0131d\u0131klanma, isterse de mikrop kapma korkusu olsun, talihsiz ger\u00e7ek \u015fu ki planlar\u0131m\u0131z\u0131n \u00e7o\u011fu iptal edilmek ya da ertelenmek zorunda kald\u0131. Bu bizim \u015fu anki ger\u00e7ekli\u011fimiz. \u00c7o\u011fu insan Emily'nin veya Kistik Fibrozis (KF) gibi bir hastal\u0131\u011f\u0131 olan herhangi birinin yapmak zorunda oldu\u011fu g\u00fcnl\u00fck se\u00e7imlerin fark\u0131nda de\u011fil ve bunlar\u0131n \u00e7o\u011fu g\u00f6r\u00fcnmez kal\u0131yor. <\/p>\n

\n

\"Hasta olmak ile sa\u011fl\u0131kl\u0131 olmak aras\u0131ndaki fark, d\u00fcnyan\u0131n geri kalan\u0131 se\u00e7im yapmak zorunda de\u011filken, se\u00e7im yapmak ya da bilin\u00e7li olarak bir \u015feyler d\u00fc\u015f\u00fcnmek zorunda olmakt\u0131r. Sa\u011fl\u0131kl\u0131 olanlar se\u00e7im yapmadan ya\u015fama l\u00fcks\u00fcne sahiptir...\"
\n<\/b>~ Christine Miserandino, Ka\u015f\u0131k Teorisi<\/em><\/b><\/p>\n<\/blockquote>\n

Y\u0131llar \u00f6nce, Emily beni bu fikirle tan\u0131\u015ft\u0131rd\u0131. \"Ka\u015f\u0131k Teorisi\"<\/a> Christine Miserandino ve \u00f6l\u00fcmc\u00fcl bir hastal\u0131kla ya\u015farken her g\u00fcn yapmak zorunda oldu\u011fu zor se\u00e7imlerle nas\u0131l ili\u015fkili oldu\u011fu. Teori, kronik bir hastal\u0131ktan muzdaripken her g\u00fcn mevcut olan s\u0131n\u0131rl\u0131 miktarda se\u00e7enek, enerji ve canl\u0131l\u0131\u011f\u0131 temsil etmek i\u00e7in ayr\u0131 ayr\u0131 ka\u015f\u0131klar kullan\u0131yor. <\/p>\n

Christine \u015f\u00f6yle anlat\u0131yor: \"Hasta olmak ile sa\u011fl\u0131kl\u0131 olmak aras\u0131ndaki fark, d\u00fcnyan\u0131n geri kalan\u0131n\u0131n yapmak zorunda olmad\u0131\u011f\u0131 se\u00e7imler yapmak ya da bilin\u00e7li olarak bir \u015feyler d\u00fc\u015f\u00fcnmek zorunda olmakt\u0131r. Sa\u011fl\u0131kl\u0131 olanlar se\u00e7imsiz bir ya\u015fam l\u00fcks\u00fcne sahiptir, bu da \u00e7o\u011fu insan\u0131n hafife ald\u0131\u011f\u0131 bir hediyedir. \u00c7o\u011fu insan g\u00fcne s\u0131n\u0131rs\u0131z say\u0131da olanakla ve arzu etti\u011fi her \u015feyi yapabilecek enerjiyle ba\u015flar...'' <\/p>\n

\"\"<\/p>\n

Emily'nin g\u00fcnl\u00fck ka\u015f\u0131k say\u0131s\u0131 ve enerji birimleri a\u00e7\u0131s\u0131ndan d\u00fc\u015f\u00fcnmek, verecek s\u0131n\u0131rl\u0131 bir miktar\u0131 oldu\u011funu anlamak i\u00e7in bana yard\u0131mc\u0131 oluyor. Emily, hasta savunuculu\u011funda ve giri\u015fimci hay\u0131rseverlikte bir lider olarak EE'nin kritik \u00e7al\u0131\u015fmalar\u0131na \u00e7ok \u015fey verdi ve KF'li ki\u015filere at\u0131l\u0131mlar getirmek i\u00e7in yorulmadan \u00e7al\u0131\u015f\u0131yor. Ancak Emily'nin ka\u015f\u0131klar\u0131n\u0131, fiziksel ve zihinsel g\u00fcc\u00fcn\u00fc g\u00f6r\u00fcyorum ve ne kadar \u00e7abuk t\u00fckenebilece\u011finden korkuyorum.    <\/p>\n

Bu y\u0131l Emily'nin \u00e7o\u011fumuzun radar\u0131nda bile olmayan bir so\u011fuk alg\u0131nl\u0131\u011f\u0131 nedeniyle hastaneye kald\u0131r\u0131ld\u0131\u011f\u0131n\u0131 g\u00f6rd\u00fcm. Dolay\u0131s\u0131yla, \u00fc\u00e7 haftad\u0131r planlanm\u0131\u015f bir ak\u015fam yeme\u011fi randevusunu d\u00f6rt g\u00f6zle bekliyor olsak bile, birlikte vakit ge\u00e7irme arzumuzun olas\u0131 sa\u011fl\u0131k risklerinin \u00f6n\u00fcne ge\u00e7mesine izin verme l\u00fcks\u00fcm\u00fcz yok. Okul \u00f6ncesi \u00e7a\u011fdaki \u00e7ocu\u011fumdan ta\u015f\u0131d\u0131\u011f\u0131m mikroplar\u0131 ona bula\u015ft\u0131rman\u0131n olas\u0131 sonu\u00e7lar\u0131 konusunda art\u0131k her zamankinden daha fazla endi\u015feleniyorum. Ayr\u0131ca Emily'nin kendini biraz bitkin ya da t\u00fckenmi\u015f hissetti\u011fini fark etti\u011fi an\u0131 ertelemekte \u0131srar etmenin ne kadar \u00f6nemli oldu\u011funu da \u00e7ok iyi anl\u0131yorum. En iyi arkada\u015f\u0131m\u0131n \u00e7ok daha h\u0131zl\u0131 bir \u015fekilde hastalanmas\u0131n\u0131 ve iyile\u015fme s\u00fcresinin uzamas\u0131n\u0131 izliyorum.<\/p>\n

\"\"<\/p>\n

Emily'nin bu y\u0131lki do\u011fum g\u00fcn\u00fcn\u00fc d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcmde, bir\u00e7ok a\u00e7\u0131dan onun artan g\u00fcnl\u00fck zorluklar\u0131n\u0131n fark\u0131na var\u0131yorum. On y\u0131l \u00f6nce, yerel barlarda dans etmek ve \u015fark\u0131 s\u00f6ylemek ve apartman\u0131m\u0131zdaki paket yemek randevular\u0131 i\u00e7in ay\u0131racak daha fazla ka\u015f\u0131\u011f\u0131 vard\u0131. Ancak 2020'de, histerik an\u0131lar ve \u00f6zel anlardan olu\u015fan uzun listemize yenilerini eklemeyi planlasam da, onun rezervuar\u0131na kendim bir \u015fey ekleyemeyecek olmak ac\u0131 verici. Ona bir \u015fey verebilecek olsayd\u0131m, ke\u015fke daha fazla ka\u015f\u0131k, daha fazla enerji, daha fazla zaman verebilseydim. <\/p>\n

Sadece oyunun kurallar\u0131n\u0131 de\u011fi\u015ftirecek at\u0131l\u0131mlar Emily'ye ve KF'nin sa\u00e7ma mutasyonlar\u0131na sahip di\u011ferlerine daha fazla zaman ve gelecek sa\u011flayabilir. Ve s\u0131n\u0131rs\u0131z olas\u0131l\u0131k ka\u015f\u0131klar\u0131yla dolu bu gelece\u011fi yaratmak bize ba\u011fl\u0131!<\/p>\n

\"\"<\/p>\n

Emily'ye ve t\u00fcm KF toplulu\u011funa verebilece\u011fimiz en b\u00fcy\u00fck do\u011fum g\u00fcn\u00fc hediyesi, EE'nin daha fazla hayat kurtaran ara\u015ft\u0131rmay\u0131 finanse etmesine yard\u0131mc\u0131 olacak ve bizi nihai hedefimize bir ad\u0131m daha yakla\u015ft\u0131racak mali bir ba\u011f\u0131\u015ft\u0131r. Ge\u00e7ti\u011fimiz y\u0131l KF toplulu\u011funun 90%'si i\u00e7in b\u00fcy\u00fck at\u0131l\u0131mlar getirdi, ancak Emily ve son 10%'deki di\u011ferleri i\u00e7in hala sava\u015f\u0131yoruz. <\/p>\n

#35for35 kampanyam\u0131za kat\u0131l\u0131n ve en iyi arkada\u015f\u0131m Emily'nin 35. do\u011fum g\u00fcn\u00fcn\u00fc, daha nicelerini g\u00fcvence alt\u0131na almaya yard\u0131mc\u0131 olacak bir hediye ile kutlamama yard\u0131mc\u0131 olun!<\/strong><\/p>\n

FACEBOOK'TA EMILY'S 35TH I\u0307\u00c7I\u0307N $35 BA\u011eI\u015eTA BULUNUN<\/a><\/p>\n

VEYA<\/strong><\/h3>\n

EMILY'NI\u0307N 35. YA\u015e G\u00dcN\u00dc I\u0307\u00c7I\u0307N WEB SI\u0307TESI\u0307NDEN $35 BA\u011eI\u015eTA BULUNUN<\/a><\/p>\n

\n

\"The Spoon Theory\" 2003 y\u0131l\u0131nda Christine Miserandino<\/a> Lupus ile ya\u015fama deneyimini anlatmak i\u00e7in. Kendisi \u00f6d\u00fcll\u00fc bir yazar, blog yazar\u0131, konu\u015fmac\u0131, marka el\u00e7isi, hasta deneyimi savunucusu ve www.ButYouDontLookSick.com.<\/a><\/span><\/em><\/p>","protected":false},"excerpt":{"rendered":"

Bug\u00fcn\u00fcn konuk blog yazar\u0131, de\u011ferli EE Y\u00f6netim Kurulu \u00dcyemiz ve Emily'nin hayat boyu en iyi arkada\u015f\u0131 Jessica Rutstein Lazarus, yaz\u0131s\u0131yla #35for35 kampanyam\u0131z\u0131 ve sevgili Emily'nin do\u011fum g\u00fcn\u00fc kutlamas\u0131n\u0131 resmen ba\u015flat\u0131yor. Beni tan\u0131mayanlar i\u00e7in s\u00f6yleyeyim, ad\u0131m Jess. Emily'nin ortaokuldan beri en iyi arkada\u015flar\u0131ndan biriyim ve ayn\u0131 zamanda... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1704,"featured_media":14079,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"none","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[{"url":"","title":"","desc":"","thumbnail":"","duration":"","rating":"","view_count":"","tag":"","cat":""}],"_seopress_pro_schemas_manual":null,"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1],"tags":[125,52,124,7,12,78,123,122,120],"class_list":["post-14078","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-birthday","tag-cf-awareness","tag-christina-miserandino","tag-cystic-fibrosis","tag-emilys-entourage","tag-nonsense-mutations","tag-spoonies","tag-the-spoon-theory","tag-trikafta"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/EKGJess_2019.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14078","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1704"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=14078"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14078\/revisions"}],"predecessor-version":[{"id":20555,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/14078\/revisions\/20555"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/14079"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=14078"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=14078"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=14078"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}