{"id":1242,"date":"2021-11-30T18:41:57","date_gmt":"2021-11-30T23:41:57","guid":{"rendered":"http:\/\/missaudrey.net\/?p=1242"},"modified":"2021-11-30T18:45:11","modified_gmt":"2021-11-30T23:45:11","slug":"almost","status":"publish","type":"post","link":"http:\/\/missaudrey.net\/?p=1242","title":{"rendered":"Almost."},"content":{"rendered":"\n<p>How about that last post, huh? WHAT A DOWNER.<\/p>\n\n\n\n<p>I&#8217;d sort of resolved to not write another until I had The Answer, the all-encompassing reason behind the wretched experience that was\/has been daily life up to, well, still, kinda.<\/p>\n\n\n\n<p>Suffice it to say, The Great Answer has yet to reveal itself. But I feel like we&#8217;re almost there.<\/p>\n\n\n\n<p>The Moon Friend has really exploded on the verbal front lately. And he&#8217;s doing a lot of mimicking. One imitation of me in particular that I find hilarious is my reading of &#8220;almost,&#8221; particularly when he&#8217;s attempting a task on his own and I&#8217;m hovering, trying to sit on all my impulses to do it for him so he can <em>learn, man<\/em>. <\/p>\n\n\n\n<p>So he&#8217;ll be buckling his high chair straps or pushing a button or closing a lid, and that sweet little voice will singsong &#8220;almost!&#8221; Just like I do.<\/p>\n\n\n\n<p>Such an interesting word, really, when context is considered. <em>Almost<\/em>, for him, meaning success is close. <em>Almost<\/em>, for me at the moment, is an agonizing, indeterminate waiting. It&#8217;s a knife&#8217;s edge, either way. What a massive, looming word it is.<\/p>\n\n\n\n<p>Living in the space of <em>almost<\/em> right now as it pertains to my physical health, I&#8217;ve learned a handful of things. <\/p>\n\n\n\n<ol class=\"wp-block-list\"><li>I have a genetic condition known as <a rel=\"noreferrer noopener\" href=\"https:\/\/www.ehlers-danlos.com\/what-is-hsd\/\" target=\"_blank\">Hypermobility Spectrum Disorder<\/a>. It explains a lot, including much in my childhood and adolescence that never seemed quite right. So if you&#8217;re a friend from back in the day who wondered why I always bailed on plans and preferred to stay home on the weekends and never played sports? SURPRISE! HSD! I spent most of the summer doing PT to help stabilize my rickety joints, but this will be (and has been) a thing forever.<\/li><li>All those headaches and a lot of the fatigue and nausea? Turns out I was having what is known as status migraine, or, a migraine that just lasts&#8230; forever. I&#8217;m on a bunch of meds now, so it&#8217;s no longer an every day thing, but I&#8217;m still getting migraines 10-12 days a month. <\/li><li>It is incredibly likely that I have a chronic blood cancer called Polycythemia Vera. It&#8217;s not fatal, but it&#8217;s a giant pain, and it causes the entire laundry list of symptoms from my last post. I say incredibly likely because I don&#8217;t yet have all the clinical markers necessary to diagnose the disease, and probably won&#8217;t until I hit menopause and stop having periods. But a very nice HemOnc took a look at my aforementioned laundry list, suggested we try therapeutic phlebotomy (the first stop on the treatment train for PV) and see what happened.<\/li><\/ol>\n\n\n\n<p>Gentle reader, it was like I got my life back in one fell swoop. Later in the evening on Phlebotomy Day, my head felt practically empty, loose. The next day, I didn&#8217;t have to lay down. At all. I did chores. I parented. I cooked a meal. It was incredible.<\/p>\n\n\n\n<p>Since then (almost a month ago now), things have backslid a bit. I&#8217;ve had a few migraines, and had to take some rests. But my overall energy levels are still worlds better than they were before November 2, and even the migraines I&#8217;ve had have been far less intense. So I&#8217;m tentatively trying to step back into parts of my life I&#8217;d pretty much abandoned since the worst of this all started.<\/p>\n\n\n\n<p>Like writing.<\/p>\n\n\n\n<p>I&#8217;m not sure where we go from here, other than another phlebotomy scheduled for February. So still, I live in the land of <em>almost<\/em>. <\/p>\n\n\n\n<p>But it&#8217;s sure as hell better than where I was living before.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>How about that last post, huh? WHAT A DOWNER. I&#8217;d sort of resolved to not write another until I had The Answer, the all-encompassing reason behind the wretched experience that was\/has been daily life up to, well, still, kinda. Suffice it to say, The Great Answer has yet to reveal itself. But I feel like we&#8217;re almost there. The Moon Friend has really exploded on the verbal front lately. And.. <a href=\"http:\/\/missaudrey.net\/?p=1242\">Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[141,142,143],"class_list":["post-1242","post","type-post","status-publish","format-standard","hentry","category-quotidienne","tag-chronic-illness","tag-disability","tag-medical-stuff"],"_links":{"self":[{"href":"http:\/\/missaudrey.net\/index.php?rest_route=\/wp\/v2\/posts\/1242","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/missaudrey.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/missaudrey.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/missaudrey.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/missaudrey.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1242"}],"version-history":[{"count":1,"href":"http:\/\/missaudrey.net\/index.php?rest_route=\/wp\/v2\/posts\/1242\/revisions"}],"predecessor-version":[{"id":1243,"href":"http:\/\/missaudrey.net\/index.php?rest_route=\/wp\/v2\/posts\/1242\/revisions\/1243"}],"wp:attachment":[{"href":"http:\/\/missaudrey.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1242"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/missaudrey.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1242"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/missaudrey.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1242"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}