Writing early because I didn\u2019t sleep well, again.<\/p>\n\n\n\n
Today, I write about my condition. I\u2019ve tired to avoid that, but it\u2019s important that I do. Yesterday\u2019s entry has what I wrote back in November 2010.<\/p>\n\n\n\n
From 2010: I mean, the biggest thing, probably, is that people kind of think the worst about the progression \u2014 that I\u2019m going to be a complete cripple within five years.<\/em><\/p>\n\n\n\n That hasn\u2019t happened, despite a few disease exacerbations, and a long path finding the right treatment. I carry a cane when I\u2019m out of my house these days, and have trouble going down<\/strong><\/em> stairs. My vision is also horrible.<\/p>\n\n\n\n I really stopped driving in the middle of 2012. Yes, a bit of an accident prompted that; I hit a spare tire that\u2019d fallen off of a truck right in front of me in heavy traffic. When I tried to drive, again, toward the end of that year, I was having trouble working the clutch, reading the speedometer, and seeing red lights. (Yeah, a red light against a green tree? Good luck with me seeing that.)<\/p>\n\n\n\n But, on top of the physical problems, my horrible work situations haven\u2019t helped. There\u2019s a handful of people I\u2019d just assume I never speak to again. I\u2019ve never been spiteful like that, but no money on top of physical pain, disease-related difficulty, brings that on. (The first job after I was laid off was 78% of what I\u2019d been earning. The second was a bit more salary, but no usable benefits.)<\/p>\n\n\n\n Have I been mistreated? You bet. Have I done things I probably shouldn\u2019t have? Probably a couple.<\/p>\n\n\n\n Have some friends really shied away? Yep. Whatever. I could be angry about it, but what\u2019s the point? I have other things to worry about.<\/p>\n\n\n\n All that said, I\u2019m now on a treatment that seems to be working pretty well. I honestly often feel better than I have in years. But the damage is done, and I wonder if\/when I\u2019ll get back to living a somewhat-\u201cnormal\u201d life.<\/p>\n\n\n\n There\u2019s important work going on that might actually \u201ccure\u201d this disease. No, the treatment doesn\u2019t sound fun at all, but getting my vision back would really make my life better. Studies have been done in the UK, Canada, and Israel with \u201cmiraculous\u201d results. You don\u2019t see that sort of language used in in the medical field.<\/p>\n\n\n\n (Essentially, they drill your femurs, gather stem cells, cultivate them, completely kill your defective immune system, then inject the stem cells to rebuild the immune system and repair damage caused by the disease. I\u2019ll spare my commentary about the political implications of this, but I\u2019ll say that I\u2019m excited about the fact that the very-Catholic Georgetown University might be one of the places they try to do this in the US\u2026)<\/p>\n\n\n\n I\u2019m happy with some of accomodation my new job affords me. I\u2019m still getting up-to-speed on some things, but I\u2019m getting by. It\u2019s incredible seeing the struggle ongoing to string along all this expensive legacy stuff.<\/p>\n\n\n\n I also have zero<\/strong><\/em> benefits, so my salary is still probably only about what I was grossing in 2007.<\/p>\n\n\n\n But I have a wife I love, and try to learn new things every day.<\/p>\n\n\n\n Tomorrow is the last day of this writing period. Taking suggestions for November, or any time before then. Hopefully, the rest of this year continues with the hopeful pirit I\u2019ve had for the past few months. Writing early because I didn\u2019t sleep well, again. Today, I write about my condition. I\u2019ve tired to avoid that, but it\u2019s important that I do. Yesterday\u2019s entry has what I wrote back in November 2010. From 2010: I mean, the biggest thing, probably, is that people kind of think the worst about the progression \u2014 that […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-2594","post","type-post","status-publish","format-standard","hentry","category-summer-writing"],"_links":{"self":[{"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/posts\/2594","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/comments?post=2594"}],"version-history":[{"count":0,"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/posts\/2594\/revisions"}],"wp:attachment":[{"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/media?parent=2594"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/categories?post=2594"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/control-h.org\/index.php\/wp-json\/wp\/v2\/tags?post=2594"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
<\/p>\n","protected":false},"excerpt":{"rendered":"