{"id":1234,"date":"2014-01-21T11:02:55","date_gmt":"2014-01-21T11:02:55","guid":{"rendered":"http:\/\/jordantheheadcase.wordpress.com\/?p=1234"},"modified":"2024-06-01T10:59:57","modified_gmt":"2024-06-01T10:59:57","slug":"i-am-not-a-patient-patient","status":"publish","type":"post","link":"https:\/\/jordantheheadcase.com\/index.php\/2014\/01\/21\/i-am-not-a-patient-patient\/","title":{"rendered":"I am not a patient patient."},"content":{"rendered":"

At last!\u00a0 At long flipping last!\u00a0 I actually feel a little better in the head department.\u00a0 When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries.\u00a0 It has been a challenge sometimes to believe that I would get better but sometimes you have<\/em> to believe in the positive.\u00a0 Even if you have to force yourself to.\u00a0 Anyway, yesterday I managed to go for a run…the first run in six months.\u00a0 Oh, how I’ve missed it.\u00a0 It hurts my head when I run; the pressure can go a bit mad and my face tends to turn a worrying shade of purple, like a grape.\u00a0 It’s not attractive.\u00a0 But afterwards I always feel fantastic; I sleep better, my headaches are generally easier and I can eat cake without having to worry too much about it as my metabolism is so much faster.\u00a0 My surgeons know I run daily most of the time and have never told me to stop.\u00a0 So yesterday I felt very jubilant because before that there was no WAY I could have run; I was having difficulty even standing up from a sitting position.\u00a0 I had a pressure reduction in my shunt six days ago and I can feel the improvement slowly but steadily going on.\u00a0 Until this week, my bed was raised on two bricks at the head-end (I couldn’t tolerate lying flat) and every time I’d go to stand up the pressure would go too high for me to tolerate.\u00a0 So I told Saint Simon, who ordered me to come up the next day and he changed it for me.\u00a0 And now my bed is only on one brick and I can stand up a lot more easily.\u00a0 I think I’ll need one more pressure reduction in the next couple of months and hopefully that will be it.\u00a0 But oh, the relief of starting to feel better after almost a year of feeling constantly exhausted, headachey, pressured and sick.\u00a0 I’ve even taken on an extra work shift.\u00a0 Get me.
\nAnd now it’s shunt project time!\u00a0 Kim Nguyen Browne from Go Vap Orphanage has a much-needed brain scan for me of one of the orphans there who was born with half a brain and who was successfully shunted.\u00a0 Usually the children born with these sorts of complications are left with no treatment at all.\u00a0 Kim has unfortunately been very ill so instead of being in Vietnam right now as originally planned, getting the much-needed figures from the government, she’s staying here to recover.\u00a0 Poor thing; she’s missed the children she usually sees over there so much but her health comes first.\u00a0 Health always comes first!\u00a0 Given the change of circumstances Kim has asked if I can deal with the government in Vietnam.\u00a0 Me.\u00a0 Little old me.\u00a0 Oh, God.\u00a0 I’m meeting with her soon to collect the scan and to get a crash course in liaising with the Vietnamese government. She thinks my dealing with them will speed things along as she’s still too ill to do all this – which makes sense.\u00a0 But I feel the same way now that I did when I initially started this project; that I’m way out of my depth and have no idea of what I’m actually doing!\u00a0 Of course she’ll help me and will be there for support.\u00a0 And obviously I have Lewis on board now too so I’m not doing this alone.\u00a0 But it still scares the crap out of me.\u00a0 I can barely understand the motivations behind our own coalition government most of the time but at least they have a healthcare system which actually treats sick and disabled children (as long as they don’t dismantle it in the next few years).\u00a0 Trying to bring about change in a health ministry which has run the same way for years and doesn’t seem to have the motivation to treat sick and disabled children feels like it’s going to be a challenge to say the least.\u00a0 But then I knew my present recovery was going to be slow and drawn-out – and I was right.\u00a0 But I’m getting there and things are slowly improving.\u00a0 Pigeon steps forwards.\u00a0 But steps forwards nonetheless.\u00a0 I think we can apply that to foreign health ministries, right?<\/p>\n","protected":false},"excerpt":{"rendered":"

At last!\u00a0 At long flipping last!\u00a0 I actually feel a little better in the head department.\u00a0 When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries.\u00a0 It […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[7],"tags":[19,51,56,63,71,111],"class_list":["post-1234","post","type-post","status-publish","format-standard","hentry","category-my-charity","tag-brain","tag-go-vap-orphanage","tag-health","tag-hydrocephalus","tag-lewis-thorne","tag-vietnam"],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1234","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/comments?post=1234"}],"version-history":[{"count":1,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1234\/revisions"}],"predecessor-version":[{"id":2300,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1234\/revisions\/2300"}],"wp:attachment":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media?parent=1234"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/categories?post=1234"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/tags?post=1234"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}