Hein, Ward Jeanet, Floor<\/figcaption><\/figure>\nMy least favourite doctor<\/h2>\n
Last month we went to Utrecht again. We always make sure to get an appointment with Dr. Kampelmacher, a nice fellow. After the pulmonary test we struck up conversation with him. His modus operandi is complaint-based, so as long as we have nothing to report, our appointments consist of some chit-chat and nothing more. Before, he\u2019d ask to listen to my lungs, but by now he stopped doing that too. Just another thing he\u2019d only do if we had something to report. He\u2019s my kind of guy. <\/p>\n
This time, things went differently. It already started when he asked Hein for a one-on-one discussion. \u201cMr. van der Vlist, could you come over here for a second?\u201d (Poor Hein, I use my maiden name, which means that in hospitals, he\u2019s addressed as \u201cMr. van der Vlist.) That really rubbed me the wrong way. Why just Hein? Am I not allowed to hear something? Hein found it as ridiculous as I did. I would be part of the conversation. The question was simply whether I wanted my lungs tested, seeing as I had trouble blowing into the machine last time. I didn\u2019t. Did she want to make this decision without consulting me? What I did ask for was a blood test to check my carbon dioxide levels. <\/p>\n
The next nasty surprise: my own doctor wasn\u2019t in that day, but a doctor I don\u2019t like was. Three years ago, he advised me to get a PEG. No complaints there. But against everything I value, he went over my head and made an appointment at the AMC. It was a matter of urgency, he claimed. Despite that, I had to wait 8 months. I don\u2019t like controlling doctors. Ever since, I\u2019ve tried avoiding him. Oh well, what could I do?<\/p>\n
He was visibly disappointed that I hadn\u2019t done any lung capacity tests and he asked me about my cough. I told him I was fine, while he was busy unwrapping something. It turned out to be a device that measures coughing force. It also had a very obtuse mouthpiece. Courteously, he asked if he could measure my coughing. Hein gave a resounding \u201cno\u201d. Following that, he read out a whole list of medical conditions related to hypoxia. By now, they\u2019re etched into my mind. Nighttime transpiration? Nightmares? Nocturnal drooling? Morning headaches? I put my head in \u201cshaking no-mode\u201d. Shakiness? Pooping? Unintentionally falling asleep? Dullness? That wasn\u2019t even the end of it. My blood pressure, heartbeat and breathing per minute were measured. He also used a stethoscope to listen to my lungs. Do you know the expression \u201cignorance is bliss\u201d? It proved to be true once again. My blood pressure is very high, 25 points above average. It only made me more fearful. Because despite my talk, I\u2019m actually terribly afraid of this doctor. I had better avoid him next time. <\/p>\n
Children<\/h2>\n
Young kids have a certain way of reacting to my disease, or rather, my wheelchair, my drinking with a straw and my idiotic way of speaking. When my new neighbours\u2019 kids first saw me, they said, with all earnesty, \u201caw, that\u2019s so sad\u201d. I\u2019m often stared at at the tea parlour. Kids don\u2019t know embarrassment. Parents do. And some parent-child interactions are hilarious. The other day, a child in the park told us: \u201cthat lady has been naughty\u201d. I don\u2019t know why, maybe only naughty people end up in wheelchairs? Immediately, bother parents, obviously embarrassed, said in unison: \u201cthat lady hasn\u2019t been naughty!\u201d Or I\u2019d pass a child talking with their parents about me. Or parents trying to keep their child from staring at me. I used to make me uncomfortable. By now, I just smile. People can get used to anything.<\/p>\n
A touristic day in Amsterdam<\/h2>\n
On Sunday we visited the Anne Frank House in Amsterdam. Floor made a report on Anne Frank\u2019s diary and Ward has a book review coming up. The kids were happy to have seen it. Ward picked up a good few postcards to show in his review. I couldn\u2019t go in, so I was parked in the restaurant. Afterwards we went on a boat tour and on a stroll through the Vondelpark. I think Amsterdam is an amazing city. <\/p>\n","protected":false},"excerpt":{"rendered":"
Hein 50 Well, it\u2019s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We\u2019ll be looking back on … <\/p>\n
Continue reading “Diary November 2002”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[87,82],"tags":[129],"class_list":["post-1725","post","type-post","status-publish","format-standard","hentry","category-2002-en","category-diary","tag-longcapaciteit-en"],"yoast_head":"\nDiary November 2002 - Living with ALS<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/levenmetals.nl\/en\/diary-november-2002\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Diary November 2002 - Living with ALS\" \/>\n<meta property=\"og:description\" content=\"Hein 50 Well, it\u2019s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We\u2019ll be looking back on … Continue reading "Diary November 2002"\" \/>\n<meta property=\"og:url\" content=\"https:\/\/levenmetals.nl\/en\/diary-november-2002\/\" \/>\n<meta property=\"og:site_name\" content=\"Living with ALS\" \/>\n<meta property=\"article:published_time\" content=\"2002-11-30T11:54:53+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2018-04-16T11:02:11+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein1.jpg\" \/>\n<meta name=\"author\" content=\"Jeanet van der Vlist\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Jeanet van der Vlist\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/\"},\"author\":{\"name\":\"Jeanet van der Vlist\",\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/#\\\/schema\\\/person\\\/9528e275a9015860592ed9fd6d8ffc1e\"},\"headline\":\"Diary November 2002\",\"datePublished\":\"2002-11-30T11:54:53+00:00\",\"dateModified\":\"2018-04-16T11:02:11+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/\"},\"wordCount\":934,\"publisher\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/#\\\/schema\\\/person\\\/9528e275a9015860592ed9fd6d8ffc1e\"},\"image\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/11\\\/hein1.jpg\",\"keywords\":[\"longcapaciteit\"],\"articleSection\":[\"2002\",\"Diary\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/\",\"url\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/\",\"name\":\"Diary November 2002 - Living with ALS\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/11\\\/hein1.jpg\",\"datePublished\":\"2002-11-30T11:54:53+00:00\",\"dateModified\":\"2018-04-16T11:02:11+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/#primaryimage\",\"url\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/11\\\/hein1.jpg\",\"contentUrl\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/11\\\/hein1.jpg\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/diary-november-2002\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/levenmetals.nl\\\/en\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Diary November 2002\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/#website\",\"url\":\"https:\\\/\\\/levenmetals.nl\\\/\",\"name\":\"Living with ALS\",\"description\":\"Jeanet van der Vlist's Diary\",\"publisher\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/#\\\/schema\\\/person\\\/9528e275a9015860592ed9fd6d8ffc1e\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/levenmetals.nl\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"},{\"@type\":[\"Person\",\"Organization\"],\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/#\\\/schema\\\/person\\\/9528e275a9015860592ed9fd6d8ffc1e\",\"name\":\"Jeanet van der Vlist\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/12\\\/IMG_2136.jpg\",\"url\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/12\\\/IMG_2136.jpg\",\"contentUrl\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/12\\\/IMG_2136.jpg\",\"width\":1500,\"height\":2174,\"caption\":\"Jeanet van der Vlist\"},\"logo\":{\"@id\":\"https:\\\/\\\/levenmetals.nl\\\/ziw\\\/wp-content\\\/uploads\\\/2017\\\/12\\\/IMG_2136.jpg\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Diary November 2002 - Living with ALS","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/","og_locale":"en_US","og_type":"article","og_title":"Diary November 2002 - Living with ALS","og_description":"Hein 50 Well, it\u2019s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We\u2019ll be looking back on … Continue reading \"Diary November 2002\"","og_url":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/","og_site_name":"Living with ALS","article_published_time":"2002-11-30T11:54:53+00:00","article_modified_time":"2018-04-16T11:02:11+00:00","og_image":[{"url":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein1.jpg","type":"","width":"","height":""}],"author":"Jeanet van der Vlist","twitter_card":"summary_large_image","twitter_misc":{"Written by":"Jeanet van der Vlist","Est. reading time":"5 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/#article","isPartOf":{"@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/"},"author":{"name":"Jeanet van der Vlist","@id":"https:\/\/levenmetals.nl\/#\/schema\/person\/9528e275a9015860592ed9fd6d8ffc1e"},"headline":"Diary November 2002","datePublished":"2002-11-30T11:54:53+00:00","dateModified":"2018-04-16T11:02:11+00:00","mainEntityOfPage":{"@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/"},"wordCount":934,"publisher":{"@id":"https:\/\/levenmetals.nl\/#\/schema\/person\/9528e275a9015860592ed9fd6d8ffc1e"},"image":{"@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/#primaryimage"},"thumbnailUrl":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein1.jpg","keywords":["longcapaciteit"],"articleSection":["2002","Diary"],"inLanguage":"en-US"},{"@type":"WebPage","@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/","url":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/","name":"Diary November 2002 - Living with ALS","isPartOf":{"@id":"https:\/\/levenmetals.nl\/#website"},"primaryImageOfPage":{"@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/#primaryimage"},"image":{"@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/#primaryimage"},"thumbnailUrl":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein1.jpg","datePublished":"2002-11-30T11:54:53+00:00","dateModified":"2018-04-16T11:02:11+00:00","breadcrumb":{"@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/levenmetals.nl\/en\/diary-november-2002\/"]}]},{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/#primaryimage","url":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein1.jpg","contentUrl":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein1.jpg"},{"@type":"BreadcrumbList","@id":"https:\/\/levenmetals.nl\/en\/diary-november-2002\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/levenmetals.nl\/en\/"},{"@type":"ListItem","position":2,"name":"Diary November 2002"}]},{"@type":"WebSite","@id":"https:\/\/levenmetals.nl\/#website","url":"https:\/\/levenmetals.nl\/","name":"Living with ALS","description":"Jeanet van der Vlist's Diary","publisher":{"@id":"https:\/\/levenmetals.nl\/#\/schema\/person\/9528e275a9015860592ed9fd6d8ffc1e"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/levenmetals.nl\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":["Person","Organization"],"@id":"https:\/\/levenmetals.nl\/#\/schema\/person\/9528e275a9015860592ed9fd6d8ffc1e","name":"Jeanet van der Vlist","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/12\/IMG_2136.jpg","url":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/12\/IMG_2136.jpg","contentUrl":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/12\/IMG_2136.jpg","width":1500,"height":2174,"caption":"Jeanet van der Vlist"},"logo":{"@id":"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/12\/IMG_2136.jpg"}}]}},"_links":{"self":[{"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/posts\/1725","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/comments?post=1725"}],"version-history":[{"count":1,"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/posts\/1725\/revisions"}],"predecessor-version":[{"id":1726,"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/posts\/1725\/revisions\/1726"}],"wp:attachment":[{"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/media?parent=1725"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/categories?post=1725"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/levenmetals.nl\/en\/wp-json\/wp\/v2\/tags?post=1725"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
![\"\"](\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein1.jpg\")
Well, it\u2019s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We\u2019ll be looking back on this one for a long time. <\/p>\n![\"\"](\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein3-300x204.jpg\")
![\"\"](\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein2.jpg\")
![\"\"](\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein4.jpg\")
![\"\"](\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/hein5.jpg\")