{"id":5018,"date":"2016-09-05T12:51:58","date_gmt":"2016-09-05T16:51:58","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=5018"},"modified":"2018-02-14T12:44:56","modified_gmt":"2018-02-14T17:44:56","slug":"through-the-digital-screen-a-complicated-tale-of-friendship-in-the-cf-community","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/through-the-digital-screen-a-complicated-tale-of-friendship-in-the-cf-community\/","title":{"rendered":"Dijital Ekran Arac\u0131l\u0131\u011f\u0131yla: KF Toplulu\u011funda Karma\u015f\u0131k Bir Dostluk Hikayesi"},"content":{"rendered":"

Zaman zaman EE toplulu\u011funun bir par\u00e7as\u0131 olan konuk blog yazarlar\u0131n\u0131 blogumuza benzersiz sesleriyle katk\u0131da bulunmalar\u0131 i\u00e7in davet ediyoruz. Bug\u00fcn\u00fcn konu\u011fu Mallory Smith<\/a>Kistik Fibrozis ile ya\u015fayan 23 ya\u015f\u0131nda bir yazar ve Emily'nin de\u011ferli bir arkada\u015f\u0131. Serbest yazar ve edit\u00f6r, s\u00f6rf\u00e7\u00fc, voleybolcu ve k\u00f6pek sever olan Mallory'yi, ancak KF ile ya\u015fayan ba\u015fka bir gen\u00e7 kad\u0131n\u0131n yapabilece\u011fi gibi deneyimlerini payla\u015fmaya davet ettik.\u00a0<\/span><\/i><\/p>\n

Kistik Fibrozis (KF) ile ya\u015faman\u0131n en ac\u0131mas\u0131z y\u00f6nlerinden biri, hastalar olarak bizi en iyi anlayan insanlarla, yani di\u011fer KF hastalar\u0131yla vakit ge\u00e7iremememizdir. <\/span><\/p>\n

Kronik bir hastal\u0131\u011fa sahip olmak, ne olursa olsun, \u00f6zellikle de hastal\u0131k ilerledik\u00e7e ve \"normal\" ile \"hasta\" aras\u0131nda daha keskin ve daha karanl\u0131k \u00e7izgiler \u00e7izdik\u00e7e izole edicidir. Benim deneyimime g\u00f6re, ya\u015f\u0131m ilerledik\u00e7e, inan\u0131lmaz arkada\u015f ve aile toplulu\u011fuma KF'li ya\u015fam\u0131n duygusal karma\u015f\u0131kl\u0131\u011f\u0131n\u0131 a\u00e7\u0131klaman\u0131n gittik\u00e7e zorla\u015ft\u0131\u011f\u0131n\u0131 g\u00f6rd\u00fcm. Yan\u0131mda Kistik Fibrozis hastalar\u0131n\u0131n ortalama ya\u015fam s\u00fcresini hat\u0131rlatan bir saatle ya\u015famak, \u00f6nceliklerimi keskinle\u015ftirmenin bir yolunu bulurken, ayn\u0131 zamanda \u00f6l\u00fcm kal\u0131m meselelerini her zaman zihnimin \u00f6n saflar\u0131nda tutuyor. <\/span><\/p>\n

Eskiden KF'liler destek i\u00e7in birbirlerine yaslanabiliyorlard\u0131. Ancak \u015fimdi, bilim hastal\u0131\u011f\u0131n mekanizmalar\u0131n\u0131 yakalad\u0131k\u00e7a, k\u0131lavuzlar hastalar\u0131 birbirleriyle yak\u0131n olman\u0131n tehlikeli bir \u00e7apraz enfeksiyon riski olu\u015fturdu\u011fu konusunda uyar\u0131yor. <\/span><\/p>\n

Kistik Fibrozis hastalar\u0131, sa\u011fl\u0131kl\u0131 ki\u015filer i\u00e7in zarars\u0131z olan ve ya\u015fam\u0131 tehdit eden bakteriyel akci\u011fer enfeksiyonlar\u0131n\u0131 birbirlerine bula\u015ft\u0131rabilirler. Bu y\u00fczden birbirimizden uzak duruyoruz. Hastanede ve doktor muayenehanelerinde maske tak\u0131yoruz ve resmi tavsiye, mikroplar\u0131m\u0131z\u0131 KF'li di\u011fer ki\u015filere yaymamak i\u00e7in kapal\u0131 alan etkinliklerine sadece bir KF'li ki\u015finin kat\u0131lmas\u0131 y\u00f6n\u00fcnde. Benim i\u00e7in, 11 ya\u015f\u0131mdan beri (enfeksiyona yakaland\u0131\u011f\u0131m zaman) <\/span>Burkholderia cenocepacia<\/span><\/i>), bu k\u0131lavuz \u00f6zellikle s\u0131k\u0131 bir \u015fekilde uygulanm\u0131\u015ft\u0131r.<\/span><\/p>\n

\"10407271_10204282737441916_788051634863965580_n<\/p>\n

Sosyal medyaya girin: destek, topluluk, arkada\u015fl\u0131k veya mentorluk arayan KF'liler i\u00e7in hem bir nimet hem de bir lanet. <\/span><\/p>\n

T\u00fcm \u00e7ocuklu\u011fum boyunca KF'li ba\u015fka kimseyi tan\u0131mad\u0131m. Bu durum, 17 ya\u015f\u0131ndayken Stanford \u00dcniversitesi'nde tedavi g\u00f6rmeye ba\u015flad\u0131\u011f\u0131mda de\u011fi\u015fti; kendimi y\u0131lda 5-6 kez hastaneye yatm\u0131\u015f, geceleri \u00f6ks\u00fcr\u00fcklerini hastane duvarlar\u0131ndan duyabildi\u011fim KF hastalar\u0131ndan sadece birka\u00e7 metre uzakta park etmi\u015f buldum. Varl\u0131\u011f\u0131ndan hi\u00e7 haberdar olmad\u0131\u011f\u0131m zengin ve canl\u0131 bir a\u011fa girdi\u011fimde toplulu\u011fum \u00e7i\u00e7ek a\u00e7t\u0131. Genellikle hastane \u00e7e\u015fmesinin yan\u0131nda y\u00fcr\u00fcy\u00fc\u015flerle ba\u015flayan arkada\u015fl\u0131klar mesajla\u015fma, FaceTime ve Facebook arac\u0131l\u0131\u011f\u0131yla s\u00fcrd\u00fcr\u00fcld\u00fc. <\/span><\/p>\n

Di\u011fer KF'lilerle olan arkada\u015fl\u0131klar\u0131m hayat\u0131m\u0131 zenginle\u015ftirdi ve zor g\u00fcnlerimde bana yol g\u00f6stermeye yard\u0131mc\u0131 oldu. Emily ve ben 2014 y\u0131l\u0131nda internet arac\u0131l\u0131\u011f\u0131yla tan\u0131\u015ft\u0131k. Ge\u00e7en y\u0131l boyunca, kendi sa\u011fl\u0131\u011f\u0131m dramatik bir d\u00fc\u015f\u00fc\u015fe ge\u00e7erken, Emily ve ben s\u0131k s\u0131k konu\u015ftuk, ailelerimiz ve arkada\u015flar\u0131m\u0131zdan ba\u011f\u0131\u015f toplama \u00e7abalar\u0131m\u0131za, KF toplulu\u011funu etkileyen biyoetik konulardaki g\u00f6r\u00fc\u015flerimize ve ki\u015fisel sa\u011fl\u0131k komplikasyonlar\u0131m\u0131za kadar her \u015feyi tart\u0131\u015ft\u0131k. Emily'den ve KF'li di\u011fer kad\u0131n ve erkeklerden, hastal\u0131\u011f\u0131 zarafet, pozitiflik ve inat\u00e7\u0131 bir m\u00fccadele ruhuyla nas\u0131l y\u00f6netece\u011fimi \u00f6\u011frendim. <\/span>
\n<\/span><\/p>\n

\"Mallory-50<\/p>\n

Ancak bu dostluklar\u0131n \u00f6d\u00fclleri bedelsiz de\u011fildir. Bir an i\u00e7in, bir arkada\u015f\u0131n\u0131z vefat etti\u011finde ne hissedece\u011finizi d\u00fc\u015f\u00fcn\u00fcn (ya da b\u00f6yle bir trajedi ya\u015fad\u0131ysan\u0131z ne hissetti\u011finizi). Bu, hi\u00e7 kimsenin do\u011frudan hissetmeden anlayamayaca\u011f\u0131 bir kalp a\u011fr\u0131s\u0131na neden olan ezici bir darbedir. \u015eimdi, arkada\u015f\u0131n\u0131z\u0131n b\u00fcy\u00fck olas\u0131l\u0131kla bir g\u00fcn sizi de ayn\u0131 \u015fekilde \u00f6ld\u00fcrece\u011fini bildi\u011finiz bir hastal\u0131ktan \u00f6ld\u00fc\u011f\u00fcn\u00fc hayal edin. Bir\u00e7ok KF arkada\u015f\u0131na sahip olman\u0131n ger\u00e7ekli\u011fi budur. Kaybetti\u011fimiz arkada\u015flar\u0131m\u0131z i\u00e7in yas tutarken, kendi ailelerimiz ve kendimiz i\u00e7in de - kaybedilen veya k\u0131s\u0131tlanan f\u0131rsatlar i\u00e7in; elimizden al\u0131nan hayaller i\u00e7in - \u00f6nceden yas tutar\u0131z. <\/span><\/p>\n

Umar\u0131m bir g\u00fcn KF'li \u00e7ocuklar ve gen\u00e7 yeti\u015fkinler arkada\u015flar\u0131n\u0131n \u00f6l\u00fcm\u00fcn\u00fc izlemek zorunda kalmazlar; ancak hen\u00fcz o noktada de\u011filiz. Ne zaman bir KF mele\u011fi kanatlansa hala \u00f6lenler i\u00e7in a\u011fl\u0131yor ve kendimiz i\u00e7in korkuyoruz ve bunu \u00e7ok s\u0131k yap\u0131yoruz. <\/span><\/p>\n

Di\u011fer KF'lilerle olan ili\u015fkilerim \u015fu ana kadar geli\u015fmekte olan yeti\u015fkinli\u011fimin en iyi yanlar\u0131ndan biri oldu. O arkada\u015flar\u0131m olmasayd\u0131 bug\u00fcn oldu\u011fum ki\u015fi olamazd\u0131m. Benim i\u00e7in bu ili\u015fkilerin de\u011feri, bu s\u0131k yas tutman\u0131n maliyetinden \u00e7ok daha a\u011f\u0131r bas\u0131yor. <\/span><\/p>\n

KF sosyal medya a\u011f\u0131na kat\u0131lmak hayat\u0131mda g\u00fczel bir nimet oldu. Baz\u0131lar\u0131 i\u00e7in hasta arkada\u015flar\u0131n\u0131n ac\u0131 \u00e7ekti\u011fini g\u00f6rmek \u00e7ok zor olabilir. Ancak ben KF toplulu\u011funun diren\u00e7li bir grup oldu\u011funu ve en zor zamanlarda bile derin bir g\u00fc\u00e7 kayna\u011f\u0131na sahip oldu\u011funu g\u00f6rd\u00fcm. Ara\u015ft\u0131rma h\u0131z\u0131n\u0131 art\u0131r\u0131p KF i\u00e7in daha iyi tedaviler veya bir \u00e7are bulana kadar, bu g\u00fc\u00e7ten yararlanmaya ve birbirimizi elimizden geldi\u011fince desteklemeye devam etmemiz gerekecek. <\/span><\/p>\n

Mallory'nin deneyimleri hakk\u0131nda daha fazla bilgi i\u00e7in <\/span><\/i>Orta sayfa<\/span><\/i><\/a>.<\/span><\/i><\/p>","protected":false},"excerpt":{"rendered":"

From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today\u2019s guest is Mallory Smith, a\u00a023-year-old\u00a0writer living with\u00a0Cystic Fibrosis and\u00a0a treasured friend of Emily\u2019s. A freelance writer and editor, surfer, volleyball player, and dog lover, we invited Mallory to share her experience… <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":5019,"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":"","_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":0,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_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":[1,6],"tags":[],"class_list":["post-5018","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Mallory-50-1.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/5018","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\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=5018"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/5018\/revisions"}],"predecessor-version":[{"id":5336,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/5018\/revisions\/5336"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/5019"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=5018"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=5018"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=5018"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}