{"id":135,"date":"2019-04-27T22:48:42","date_gmt":"2019-04-27T21:48:42","guid":{"rendered":"http:\/\/journal.tromador.me.uk\/?p=135"},"modified":"2019-04-27T22:48:42","modified_gmt":"2019-04-27T21:48:42","slug":"three-years-of-unreported-sarc","status":"publish","type":"post","link":"https:\/\/journal.tromador.me.uk\/?p=135","title":{"rendered":"Three years of unreported sarc"},"content":{"rendered":"<p>I really ought to write this stuff more. I&#8217;m going to try. Three years have passed and I&#8217;ve singularly failed to record any of the changes there have been in my body, mind, soul. I&#8217;m hardly likely to be able to go back over and see how I&#8217;ve improved, or degraded in that time without a sensible record and so very much has happened &#8211; well, I mean three years nearly, duh!<\/p>\n<p>I can see that the last time I wrote about it being poison day and being generally displeased with that fact, having an expectation I&#8217;d be taking the methotrexate indefinitely and rather morbidly contemplating the possibilities of not taking it (and maybe dying) or taking it and being forever miserably sick.<\/p>\n<p>It&#8217;s nice that I can report, that in fact, neither of those things came to pass. My blood counts recovered sufficiently that I was, after all, able to stop taking methotrexate and not die. In fact I have been off the MTX for, well long enough that I&#8217;d have to check the records, so I guess more than a year. I&#8217;m still taking prednisolone, but at least I don&#8217;t have the weekly poison day to get over. People laughably talk about hump day &#8211; how little they know.<\/p>\n<p>My mental health isn&#8217;t much better. I&#8217;ve seen psychiatrists and psychologists and I&#8217;m a bit more stable I guess. I&#8217;ve been on a new drug regime for a year now, taking duloxetine and though the first couple of weeks adjusting to the new medication was hellish, once the switch clicked (and it was very much like that) I&#8217;ve been a lot better. Unfortunately over Christmas I got sick and was unable to meet some appointments, so I am now &#8220;between&#8221; psychologists. Not sure where I go from here, but as I&#8217;m pretty solid at the moment I think I suck it and see.<\/p>\n<p>Last August I had an injection into my sacrimal joint to see if this would help my leg pain. The boys at LGI wanted me to get a second opinion so I duly went to the Leeds pain clinic. Being as I was going there, the Dewsbury clinic had to discharge me, which I quite understand. Trouble is, the Leeds people never followed up on anything, so here I am near on a year later with no pain consultant at all. I&#8217;m not happy. I&#8217;d like to talk about a way of reducing or eliminating the fentanyl, ideally with the least possible side effects, but I want a proper pain consultant to talk to about it.<\/p>\n<p>So, I&#8217;m due to see the sarc doctors on 8th May. I&#8217;ve been having a bit of trouble with breathing, like taking a breath and there wasn&#8217;t enough air in it, nor the next breath or the next. A couple of nights ago I woke up and the air was like syrup, trying to get it into my lungs a real struggle. Good job they are chest guys and I can moan at them about it. I will also see if they will refer me straight back to Dewsbury, where they were looking after me for pain stuff.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>I really ought to write this stuff more. I&#8217;m going to try. Three years have passed and I&#8217;ve singularly failed to record any of the changes there have been in my body, mind, soul. I&#8217;m hardly likely to be able to go back over and see how I&#8217;ve improved, or degraded in that time without [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[2],"tags":[],"class_list":["post-135","post","type-post","status-publish","format-standard","hentry","category-sick"],"_links":{"self":[{"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=\/wp\/v2\/posts\/135","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=135"}],"version-history":[{"count":1,"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=\/wp\/v2\/posts\/135\/revisions"}],"predecessor-version":[{"id":136,"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=\/wp\/v2\/posts\/135\/revisions\/136"}],"wp:attachment":[{"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=135"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=135"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/journal.tromador.me.uk\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=135"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}