{"id":1316,"date":"2015-07-05T23:22:45","date_gmt":"2015-07-05T23:22:45","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=1316"},"modified":"2016-03-07T17:30:12","modified_gmt":"2016-03-07T17:30:12","slug":"when-i-cant-explain-i-show","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=1316","title":{"rendered":"When I Can&#8217;t Explain, I Show."},"content":{"rendered":"<p>It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really &#8220;bad&#8221;, I need to brace myself. This is what I braced myself for a couple of weeks ago&#8230;<\/p>\n<p><a href=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7570-sk.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-1318\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7570-sk.jpg\" alt=\"IMG_7570 sk\" width=\"500\" height=\"333\" srcset=\"https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7570-sk.jpg 500w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7570-sk-300x200.jpg 300w\" sizes=\"auto, (max-width: 500px) 100vw, 500px\" \/><\/a><\/p>\n<p>After I took off the bandages, big areas of skin just started peeling off the top of the foot. I wanted to show this picture because I wanted to illustrate how fragile Nicky&#8217;s skin is&#8230; it does not even blister anymore in some areas, it just peels off like this. If he has a crust anywhere it will actually &#8220;cause&#8221; more blisters and create bloody areas too. The crusts dig in the good skin and create more damage. As he puts just a little pressure to take a step, it &#8220;moves&#8221; the skin and create even more damage.<\/p>\n<p>Nicky took matters in his own hands and started cutting off the peeling skin&#8230;<\/p>\n<p><a href=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7575-sk.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-1317\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7575-sk.jpg\" alt=\"IMG_7575 sk\" width=\"500\" height=\"333\" srcset=\"https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7575-sk.jpg 500w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/07\/IMG_7575-sk-300x200.jpg 300w\" sizes=\"auto, (max-width: 500px) 100vw, 500px\" \/><\/a><\/p>\n<p>While not his whole body is like this, many areas are. Different part of his body behave in very different ways. It&#8217;s the baffling experience with EB that is hard to explain in words and must be shown to get the point across. EB is our monster we fight every day.<\/p>\n<p>I will keep taking pictures and I will keep showing as long as Nicky lets me!<\/p>\n<p>Love and Light,<\/p>\n<p><a href=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2014\/06\/Animation342_silvia.gif\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-942\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2014\/06\/Animation342_silvia.gif\" alt=\"Animation342_silvia\" width=\"193\" height=\"193\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<div class=\"fb-background-color\">\n\t\t\t  <div \n\t\t\t  \tclass = \"fb-comments\" \n\t\t\t  \tdata-href = \"https:\/\/blog.silviaskingdom.com\/?p=1316\"\n\t\t\t  \tdata-numposts = \"20\"\n\t\t\t  \tdata-lazy = \"true\"\n\t\t\t\tdata-colorscheme = \"light\"\n\t\t\t\tdata-order-by = \"reverse_time\"\n\t\t\t\tdata-mobile=true>\n\t\t\t  <\/div><\/div>\n\t\t  <style>\n\t\t    .fb-background-color {\n\t\t\t\tbackground: #ffffff !important;\n\t\t\t}\n\t\t\t.fb_iframe_widget_fluid_desktop iframe {\n\t\t\t    width: 100% !important;\n\t\t\t}\n\t\t  <\/style>\n\t\t  ","protected":false},"excerpt":{"rendered":"<p>It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really &ldquo;bad&rdquo;, I need to brace myself. This is what I braced myself for a couple of weeks ago&hellip; After I took off the bandages, big areas of skin just&#46;&#46;&#46;<\/p>\n","protected":false},"author":1,"featured_media":1318,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[19,135],"class_list":["post-1316","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","tag-epidermolysis-bullosa","tag-recessive-dystrophic"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/1316","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1316"}],"version-history":[{"count":1,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/1316\/revisions"}],"predecessor-version":[{"id":1319,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/1316\/revisions\/1319"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/media\/1318"}],"wp:attachment":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1316"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1316"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1316"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}