{"id":7,"date":"2015-04-14T18:13:21","date_gmt":"2015-04-14T18:13:21","guid":{"rendered":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/articles\/"},"modified":"2016-04-11T11:31:52","modified_gmt":"2016-04-11T19:31:52","slug":"articles","status":"publish","type":"page","link":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/articles\/","title":{"rendered":"Alaska Hope EDS Support Group Education and Experiences"},"content":{"rendered":"<p>In this section, educational information will be shared. \u00a0Webinars and flyers from EDS Awareness will be provided<\/p>\n<p>EDSers share topics, such as: local awareness activities, personal experiences and how EDS affects their daily living. If you would like to share your experiences, please contact us with your story:<\/p>\n<p>&nbsp;<\/p>\n<div id=\"main-menu\" class=\"main-menu ng-scope\">\n<div class=\"main-menu__inner\"><a class=\"main-menu__logo\" href=\"http:\/\/themighty.com\/\"><img decoding=\"async\" src=\"http:\/\/themighty.com\/wp-content\/themes\/themighty\/img\/new-mighty-logo.png\" alt=\"The Mighty\" \/><\/a><\/p>\n<div class=\"mightymvp\">\n<div class=\"mightymvp-icon\"><img decoding=\"async\" src=\"http:\/\/themighty.com\/wp-content\/themes\/themighty\/img\/mvp-icon.png\" alt=\"\" \/><\/div>\n<p>MVP Login<\/p>\n<\/div>\n<p><span class=\"logo-text\">We face disability, disease and mental illness together.<\/span><\/div>\n<\/div>\n<div id=\"row-top-categories\" class=\"row container ng-scope\">\n<div class=\"small-12 large-12 columns top-level-nav\">\n<div class=\"top-categories\">\n<ul id=\"menu-category-menu-3\" class=\"top-categories__list\">\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-138266\"><a href=\"http:\/\/themighty.com\/all\/\">CONDITIONS A-Z<\/a><\/li>\n<li class=\"menu-item menu-item-type-taxonomy menu-item-object-category current-post-ancestor menu-item-138268\"><a href=\"http:\/\/themighty.com\/category\/disorder\/\">DISABILITY &amp; DISORDER<\/a><\/li>\n<li class=\"menu-item menu-item-type-taxonomy menu-item-object-category menu-item-138269\"><a href=\"http:\/\/themighty.com\/category\/mental-illness\/\">MENTAL ILLNESS<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-138267\"><a href=\"http:\/\/themighty.com\/chronic-illness\/\">CHRONIC ILLNESS<\/a><\/li>\n<li class=\"menu-item menu-item-type-post_type menu-item-object-page menu-item-138271\"><a href=\"http:\/\/themighty.com\/rare-disease\/\">RARE DISEASE<\/a><\/li>\n<\/ul>\n<\/div>\n<div class=\"top-categories-2\">\n<ul id=\"menu-category-menu-4\" class=\"top-categories__list\">\n<li class=\"menu-item menu-item-type-taxonomy 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href=\"http:\/\/themighty.com\/video-stories\/\">Video Stories<\/a><\/li>\n<\/ul>\n<\/div>\n<p><button class=\"main-menu__control search\"><\/button><\/div>\n<\/div>\n<div class=\"row container\">\n<header class=\"art-header large-2 medium-12 columns\">\n<div class=\"row article__header-meta\">\n<div class=\"story-author large-12 columns\"><img loading=\"lazy\" decoding=\"async\" class=\"avatar avatar-40 wp-user-avatar wp-user-avatar-40 alignnone photo\" src=\"http:\/\/themighty.com\/wp-content\/uploads\/2016\/03\/image22.jpg\" alt=\"Sara Sharpe\" width=\"40\" height=\"40\" \/><\/p>\n<div>\n<div class=\"byline author\">By<\/p>\n<div>Sara Sharpe<\/div>\n<\/div>\n<\/div>\n<div class=\"author-cat-filter byline author article-byline\">Contributor<br \/>\nI write about<a class=\"author-cat-display sub-cat\" href=\"http:\/\/themighty.com\/category\/ehlers-danlos-syndrome\/\" target=\"_blank\">Ehlers-Danlos Syndrome<\/a><\/div>\n<\/div>\n<\/div>\n<\/header>\n<div id=\"content\" class=\"article small-12 large-8 columns\">\n<h1 class=\"entry-title show-mobile\">To the Doctors Who Wouldn\u2019t Say the Words \u2018Ehlers-Danlos Syndrome\u2019<\/h1>\n<article class=\"article-inner post-192734 post type-post status-publish format-standard has-post-thumbnail hentry category-ehlers-danlos-syndrome tag-cervical-spondylosis tag-chronic-illness tag-facet-block tag-hypermobility tag-selective-nerve-root-block perspective-my-condition\">\n<div class=\"story-top-social\">\n<div class=\"sumome-share-client-wrapper sumome-share-client-wrapper-custom sumome-share-client-counts sumome-share-client-light sumome-share-client-float-none sumome-share-client-medium\">\n<div class=\"sumome-share-client sumome-share-client-custom sumome-share-client-counts sumome-share-client-light sumome-share-client-medium sumome-share-client-horizontal\">\n<div class=\"sumome-share-client-animated sumome-share-client-share sumome-share-client-share-share sumome-share-client-count\"><strong>2.7k<\/strong><br \/>\nShares<\/div>\n<p><a class=\"sumome-share-client-animated sumome-share-client-share sumome-share-client-count\" title=\"Facebook Like\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/facebooklike-white-60.png\" alt=\"\" \/>2.1k<\/a><a class=\"sumome-share-client-animated sumome-share-client-share sumome-share-client-count\" title=\"Facebook\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/facebook-white-60.png\" alt=\"\" \/>657<\/a><a class=\"sumome-share-client-animated sumome-share-client-share\" title=\"Pinterest\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/pinterest-white-60.png\" alt=\"\" \/><\/a><a class=\"sumome-share-client-animated sumome-share-client-share\" title=\"Twitter\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/twitter-white-60.png\" alt=\"\" \/><\/a><\/div>\n<\/div>\n<\/div>\n<div class=\"article-date-desk\">03\/28\/16<\/div>\n<div class=\"entry-content hyphenate\">\n<p>The first time I heard the word \u201chypermobile,\u201d I was inpatient in a specialty head pain unit at a hospital in Michigan. I was sitting in a group session lead by\u00a0a physical therapist (PT)\u00a0about how to care for your neck. She asked, \u201cHow many of you are hypermobile?\u201d One woman about my age raised her hand. I didn\u2019t. I didn\u2019t know yet.<\/p>\n<p>The next time, I was at a follow up PT\u00a0appointment at the Michigan Headache and Neurological Institute (MHNI). The therapist ran me through a\u00a0<a href=\"http:\/\/www.ednf.org\/assessing-joint-hypermobility\" target=\"_blank\">Beighton Scale<\/a>\u00a0(my first of many, before I knew what it was). She said, \u201cYou have moderate hypermobility.\u201d She didn\u2019t say the words \u201c<a href=\"http:\/\/www.ednf.org\/what-eds\" target=\"_blank\">Ehlers-Danlos syndrome<\/a>.\u201d My local neurologist and PT agreed, but they didn\u2019t say those words, either. One of them suggested I join a local support group. When I looked it up, I found it was a\u00a0support group for a disease that as far as I knew, I didn\u2019t have. A disease called Ehlers-Danlos syndrome.<\/p>\n<p>Around that same time, I started seeing the pain management doctor at MHNI. He performed <a href=\"http:\/\/www.columbianeurosurgery.org\/specialties\/spine\/procedures\/non-surgical\/snrb\/\" target=\"_blank\">selective nerve root blocks<\/a> and <a href=\"http:\/\/www.lahey.org\/Departments_and_Locations\/Departments\/Pain_Management_Center\/Nerve_Blocks\/Diagnostic_Cervical_Facet_Block.aspx\" target=\"_blank\">facet blocks<\/a> on my neck. When I read his notes from my time in the hospital, I learned that I have <a href=\"http:\/\/orthoinfo.aaos.org\/topic.cfm?topic=a00369\" target=\"_blank\">cervical spondylosis<\/a> and degeneration in my neck that contributes to my pain. The procedures were meant to dampen the neck pain, and hopefully reduce headaches as a result. He didn\u2019t ever explain the new diagnoses to me \u2014 I learned about them by reading my own records.<\/p>\n<p>Eventually, I started asking questions. Why was my neck falling to pieces <em>in my 20s?<\/em>Why was I hypermobile, and what did that mean beyond muscle strain in my neck? Did it have anything to do with the unrelenting joint pain, fatigue and myalgia I\u2019m stuck with? Why was my heart rate and orthostatic blood pressure monitored so carefully in the hospital? Is this routine?\u00a0 Why was my heart rate higher than you would have liked? When I read about these things, something called Ehlers-Danlos syndrome comes up \u2014 is this something I need to worry about?<\/p>\n<figure class=\"figure alignright\"><img loading=\"lazy\" decoding=\"async\" src=\"http:\/\/themighty.com\/wp-content\/uploads\/2016\/03\/sara-sharpe-601x750.jpg\" alt=\"woman wearing blue shirt sitting on hospital bed\" width=\"601\" height=\"750\" \/><figcaption>Sara when she was admitted in October 2015 to a hospital in Michigan.<\/figcaption><\/figure>\n<p>It was not until I started asking these direct questions that one of my doctors quietly nodded in response to that last one, the big one, and suggested I see a geneticist. Still, she did not say the words \u201cEhlers-Danlos syndrome.\u201d She made me say them.<\/p>\n<p>I want to make it clear that these are not bad doctors. They are excellent. Some of them are even considered to be world-class in their field. One of them later told me they watch for these things and they just didn\u2019t want to scare me. Here is what I have to say to them in response:<\/p>\n<blockquote><p>To the doctors who didn\u2019t say the words,<\/p>\n<p>First, thank you for all that you do. I would be lost without you. Thank you also for saying the things you did, for hinting that I needed more, for making a referral, and for believing me before my diagnosis. I know that rare disease is hard to pinpoint. I know Ehlers-Danlos syndrome, and the conditions that frequently go along with it are not your area of expertise.<\/p>\n<p>Still, there\u2019s something you need to know. It\u2019s scarier when you don\u2019t say the words. When you tiptoe around them, people like me have to go it alone. We have to look elsewhere for information about what you didn\u2019t say, and that can make\u00a0us look like pain-in-the-ass patients. That is not who I want to be. I do not know it all.<\/p>\n<p>Please, if you suspect rare disease or another difficult diagnosis, say it out loud. Take the journey with us. You don\u2019t have to try and diagnose it, just be honest about what you think you\u2019re seeing, make a referral, and be willing to learn as we do. I know you were trying to spare me, but I already knew there was something wrong, something systemic. I was already scared. In fact, I had moved past scared and toward acceptance. I\u2019ve been on both sides of this. Other doctors have said words to me that ended up not sticking. That was easier to deal with, mostly because I knew what we were looking for, and how to learn about it with their\u00a0guidance. When they turned out to be the wrong words, I moved on. No big deal.<\/p>\n<p>Next time you have a situation like mine, please just say the words. Your patient will most likely be grateful.<\/p>\n<p>Sincerely,<\/p>\n<p>Sara<\/p>\n<p>P.S. My advice to all the spoonies out there? Ask the questions. Make the appointments. Be brave, like you are!<\/p><\/blockquote>\n<p><strong>Follow this journey on <a href=\"https:\/\/zebrawrites.wordpress.com\/\" target=\"_blank\">Zebra Writes<\/a>.<\/strong><\/p>\n<p><em><b>The Mighty is asking the following: <\/b><b>Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it?<\/b><b> If you\u2019d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our<\/b><a href=\"http:\/\/themighty.com\/submit-a-story\/\" target=\"_blank\"><b>Submit a Story<\/b><\/a><b> page for more about our submission guidelines.<\/b><\/em><\/p>\n<\/div>\n<\/article>\n<div class=\"article-convo medium-12 columns\">\n<hr \/>\n<p><a href=\"http:\/\/themighty.com\/author\/sara-sharpe\/\" target=\"_blank\"><img decoding=\"async\" class=\"article-signature large-4 columns\" src=\"http:\/\/themighty.com\/2016\/03\/ehlers-danlos-syndrome-letter-to-the-doctors-who-wouldnt-say-the-words\/?utm_source=share-bar&amp;utm_medium=facebook&amp;utm_campaign=sumome_share\" alt=\"\" \/><\/a><\/p>\n<div class=\"article-foot-info large-7 medium-6 columns\">\n<div>Sara Sharpe<\/div>\n<p><strong>Follow:<\/strong> <a class=\"article-author-url\" href=\"https:\/\/twitter.com\/zebrawrites\" target=\"_blank\"><img decoding=\"async\" src=\"http:\/\/themighty.com\/wp-content\/themes\/themighty\/img\/twitter.png\" alt=\"\" \/><\/a> <a class=\"article-author-url\" href=\"https:\/\/facebook.com\/groups\/1700205346894032\/\" target=\"_blank\"><img decoding=\"async\" src=\"http:\/\/themighty.com\/wp-content\/themes\/themighty\/img\/facebook.png\" alt=\"\" \/><\/a><\/div>\n<div class=\"article-foot-info\">\n<div class=\"sumome-share-client-wrapper sumome-share-client-wrapper-custom sumome-share-client-counts sumome-share-client-light sumome-share-client-float-none sumome-share-client-medium\">\n<div class=\"sumome-share-client sumome-share-client-custom sumome-share-client-counts sumome-share-client-light sumome-share-client-medium sumome-share-client-horizontal\">\n<div class=\"sumome-share-client-animated sumome-share-client-share sumome-share-client-share-share sumome-share-client-count\"><strong>2.7k<\/strong><br \/>\nShares<\/div>\n<p><a class=\"sumome-share-client-animated sumome-share-client-share sumome-share-client-count\" title=\"Facebook Like\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/facebooklike-white-60.png\" alt=\"\" \/>2.1k<\/a><a class=\"sumome-share-client-animated sumome-share-client-share sumome-share-client-count\" title=\"Facebook\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/facebook-white-60.png\" alt=\"\" \/>657<\/a><a class=\"sumome-share-client-animated sumome-share-client-share\" title=\"Pinterest\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/pinterest-white-60.png\" alt=\"\" \/><\/a><a class=\"sumome-share-client-animated sumome-share-client-share\" title=\"Twitter\"><img decoding=\"async\" src=\"http:\/\/sumome-140a.kxcdn.com\/static\/30b6b658b9a864d7e42b46e066a6e9ca643248af\/client\/images\/apps\/9e8a4d2a-6f8c-415e-851b-bdfe4c01d5c1\/twitter-white-60.png\" alt=\"\" \/><\/a><\/div>\n<\/div>\n<div class=\"art-tags\">\n<h5>TOPICS<\/h5>\n<p><a class=\"article-tags\" href=\"http:\/\/themighty.com\/2016\/03\/ehlers-danlos-syndrome-letter-to-the-doctors-who-wouldnt-say-the-words\/?utm_source=share-bar&amp;utm_medium=facebook&amp;utm_campaign=sumome_share\" target=\"_blank\">cervical spondylosis, <\/a><a class=\"article-tags\" href=\"http:\/\/themighty.com\/2016\/03\/ehlers-danlos-syndrome-letter-to-the-doctors-who-wouldnt-say-the-words\/?utm_source=share-bar&amp;utm_medium=facebook&amp;utm_campaign=sumome_share\" target=\"_blank\">chronic illness, <\/a><a class=\"article-tags\" href=\"http:\/\/themighty.com\/2016\/03\/ehlers-danlos-syndrome-letter-to-the-doctors-who-wouldnt-say-the-words\/?utm_source=share-bar&amp;utm_medium=facebook&amp;utm_campaign=sumome_share\" target=\"_blank\">facet block, <\/a><a class=\"article-tags\" href=\"http:\/\/themighty.com\/2016\/03\/ehlers-danlos-syndrome-letter-to-the-doctors-who-wouldnt-say-the-words\/?utm_source=share-bar&amp;utm_medium=facebook&amp;utm_campaign=sumome_share\" target=\"_blank\">hypermobility, <\/a><a class=\"article-tags\" href=\"http:\/\/themighty.com\/2016\/03\/ehlers-danlos-syndrome-letter-to-the-doctors-who-wouldnt-say-the-words\/?utm_source=share-bar&amp;utm_medium=facebook&amp;utm_campaign=sumome_share\" target=\"_blank\">selective nerve root block,<\/a><\/div>\n<\/div>\n<div class=\"article-sidebar\">\n<aside id=\"sidebar\">\n<article id=\"morecategorypostswidget-2\" class=\"panel widget more-category-posts-widget\">\n<h4>MORE STORIES LIKE THIS<\/h4>\n<ul class=\"list\">\n<li>\n<div class=\"related-stories-block__story\">\n<h5 class=\"related-stories-block__story__title\">When I Mourn Who I Wanted to Be Before Chronic Illness<\/h5>\n<\/div>\n<\/li>\n<li>\n<div class=\"related-stories-block__story\">\n<h5 class=\"related-stories-block__story__title\">Why I\u2019m Thankful for the Doctor Who Admitted He Didn\u2019t Know About Ehlers-Danlos Syndrome<\/h5>\n<\/div>\n<\/li>\n<li>\n<div class=\"related-stories-block__story\">\n<h5 class=\"related-stories-block__story__title\">When Joking About Chronic Illness Is My Coping Method<\/h5>\n<\/div>\n<\/li>\n<li>\n<div class=\"related-stories-block__story\">\n<h5 class=\"related-stories-block__story__title\">My Chronic Illnesses Make Me a &#8216;Reasonably Sucky Superhero&#8217;<\/h5>\n<\/div>\n<\/li>\n<li>\n<div class=\"related-stories-block__story\">\n<h5 class=\"related-stories-block__story__title\">The Hardest Thing I Deal With in My Life With Chronic Illness<\/h5>\n<\/div>\n<\/li>\n<li>\n<div class=\"related-stories-block__story\">\n<h5 class=\"related-stories-block__story__title\">What I Wish I\u2019d Known When a Nurse Said My Aches and Pains Were 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If you would like to share your experiences, please contact us with your story: &nbsp; MVP Login We face disability, disease [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-7","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/pages\/7","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/comments?post=7"}],"version-history":[{"count":10,"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/pages\/7\/revisions"}],"predecessor-version":[{"id":41,"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/pages\/7\/revisions\/41"}],"wp:attachment":[{"href":"https:\/\/www.chronicpainpartners.com\/alaska-hope-eds-support-group\/wp-json\/wp\/v2\/media?parent=7"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}