tag:blogger.com,1999:blog-82203046578115037512024-02-19T07:40:35.957-08:00Le SJSR vu de la luneLuhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-8220304657811503751.post-15287072392468256942019-02-24T23:59:00.002-08:002019-02-24T23:59:26.181-08:00Cancer mon ami<div class="" data-block="true" data-editor="4q3ec" data-offset-key="35o6i-0-0" style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="35o6i-0-0" style="font-family: inherit;">Cancer inflammatoire métastatique. Epanchement pleural.</span></div>
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<span data-offset-key="2rfbl-0-0" style="font-family: inherit;">La respiration de plus en plus laborieuse, il faut compter en mois, probablement en semaines.</span></div>
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<span data-offset-key="30nip-0-0" style="font-family: inherit;">Je ne suis pas inquiète, on aide plus à mourir qu'à vivre.</span></div>
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<span data-offset-key="5lbbi-0-0" style="font-family: inherit;">J'ai refusé les soins conventionnels, trop destructeurs, et les risques de nouvelles médications accroissant exponentiellement les symptômes de ma peste habituelle.</span></div>
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<span data-offset-key="fhd9a-0-0" style="font-family: inherit;">On sait apaiser la douleur, on ne sait pas apaiser ces crises de fou que nous subissons.</span></div>
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<span data-offset-key="fie2p-0-0" style="font-family: inherit;">Quand on ne peut pas vivre, on voudrait mourir, et à ce titre, si Willis-Ekbom est un ennemi, le cancer est un ami.</span></div>
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<span data-offset-key="2034e-0-0" style="font-family: inherit;">Je souhaite que mon témoignage reste et aide les malades survivants à se battre et obtenir d'être enfin soignés et considérés pour ce qu'ils sont: de grands malades.</span></div>
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<span data-offset-key="1e3dn-0-0" style="font-family: inherit;">N'en déplaise à ceux qui refusent des statuts humiliants (sans doute moins gravement atteints que d'autres), il devrait y avoir un stade de la maladie où on puisse avoir les mêmes aides que les handicapés ou les cancéreux.</span></div>
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<span data-offset-key="fp9sm-0-0" style="font-family: inherit;">Merci de penser à et soutenir ceux qui restent dans l'enfer des jambes, des bras, des muscles sans repos.</span></div>
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Luhttp://www.blogger.com/profile/14550584869730876738noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-34630097809608645902018-10-18T00:29:00.000-07:002018-10-18T00:29:18.088-07:00un blog moins personnel<a href="https://sjsr-impatiences.blogspot.com/">SJSR Maladie de Willis-Ekbom</a><br />
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Ceci est un blog moins personnel où j'ai rassemblé mon expérience, ce pour contribuer à ce que cette maladie soit mieux connue.<br /><br />Je regrette profondément ce qu'il est apparu ici des divisions dans ma famille et, s'il m'a été difficile de ne pas polémiquer, aujourd'hui, je pardonne et je demande pardon même si d'aucun côté on n'a l'impression d'avoir à être pardonné.<br /><br />La paix et l'amour sont les plus grandes richesses que l'on puisse avoir, (encore non imposables)... et je trouve quaucun prix n'est trop cher payé pour les préserver.<br />
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<br />Luhttp://www.blogger.com/profile/14550584869730876738noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-54673417599312649142014-01-08T09:23:00.002-08:002014-01-08T09:24:29.652-08:00la spirale infernaleLe Syndrome des jambes sans repos, anciennement SJSR, aujourd'hui Maladie De Willis-Ekbom, du nom de son découvreur, vient, comme son cousin Parkinson, d'un manque à sécréter de la dopamine, neurotransmetteur qui a un rôle dans la contraction-détente des muscles, mais qui est aussi l'hormone du plaisir.<br />
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L'équation est simple et se vérifie sans cesse<br />
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"Faites-moi plaisir" dis-je aux gens qui prétendent m'aimer.<br />
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Mais on me regarde outré, et j'entends le non verbalisé<br />
"et puis quoi encore, cent balles et puis un Mars?"<br />
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Et les gens qui m'aiment, à l'exception d'une personne, et je la nomme, c'est Sylvie Calley, non seulement se gardent bien de me faire plaisir, mais font le maximum pour que j'aie du déplaisir.<br />
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ET donc, je dois monter les traitements, avec eux s'aggravent des comportements d'adaptation qui paraissent anti sociaux, et la spirale infernale est enclenchée.<br />
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Les traitements induisent des somnolences<br />
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Par ailleurs, le seul plaisir qui me reste, sans cette vie abandonnée de tous, c'est la photo.<br />
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Et l'on voudrait, que lorsqu'on m'offre le plaisir d'une présence, je ne touche plus ni appareil photo, ni ordinateur.<br />
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Mais la somnolence me guette à table, combien de fois me suis-je réveillée piquant du nez dans mon assiette, ou piquant ma fourchette à côté.<br />
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Pour rester présent à mes convives et ne pas m'endormir, j'ai souvent un photophone à la main, etje photographie ce qui attire mon oeil, reflet dans l'eau d'un verre, Etc...<br />
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Cela me tient éveillée et ne m'empêche pas de suivre les conversations et d'y participer<br />
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Mais comme cette attitude est anti sociale.<br />
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Je cite celle-ci, parce que d'est la plus courante, et qu'on me l'a tant reprochée.<br />
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Mais tant d'autres comportements d'adaptation passent pour de l'impolitesse, de l'irrespect... Elles attirent l'agressivité et hop, un tour de plus à la spirale infernale déplaisir-symptômes de la maladie.<br />
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C'est ainsi qu'on vit seule, qu'on paie des mercenaires pour faire les travaux qu'on ne peut plus faire.<br />
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ET c'est ainsi qu'on prend le risque d'un mariage de tous les dangers pour la chance qu'il représente de recevoir du plaisir et de l'aide pour l'ensemble des handicaps de la maladie.Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-59496366927229832002011-07-30T13:07:00.000-07:002013-08-03T06:43:10.973-07:00Les photos<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQQe9pcDdxbrpvBVVaI2iiWlt76LA-5H-nLBJNUOSfXRC2CBtpHfDwWoszi7oNXBJTfCPxGDRXkZFe-phY25ry0ZRfki5a9RE2a7JDrlCvqGRQ5nu0MytpXAfYRbM4QKhE11BeZ5JZVWQ/s1600/_DSC8903jpgCKjpgCK.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQQe9pcDdxbrpvBVVaI2iiWlt76LA-5H-nLBJNUOSfXRC2CBtpHfDwWoszi7oNXBJTfCPxGDRXkZFe-phY25ry0ZRfki5a9RE2a7JDrlCvqGRQ5nu0MytpXAfYRbM4QKhE11BeZ5JZVWQ/s640/_DSC8903jpgCKjpgCK.jpg" width="424" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2dRBDPzixmJnR7fpIeQ2ebMQOu16xAYJ3FvJSGQQwTTxlFa19d3yfmYbgnFiehX0FakqJTZqp42Y1APKx00VYfiF_zA-PA_XeLlnctcY74oEzwCW1Eu0q9ChNfIF1NVzhjON7EwWzHG4/s1600/diptyqz.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2dRBDPzixmJnR7fpIeQ2ebMQOu16xAYJ3FvJSGQQwTTxlFa19d3yfmYbgnFiehX0FakqJTZqp42Y1APKx00VYfiF_zA-PA_XeLlnctcY74oEzwCW1Eu0q9ChNfIF1NVzhjON7EwWzHG4/s640/diptyqz.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIPm6QmdzlnSzOfy4Q6gGrUVSVnm3IH1oDFXvmcYjiisMwvBSyQI4NYMj_JU9eml6krjihKPxWKeuk_7MC9BH2b1X4uRcJLeuymp1QtWuNJrNLYOMsk9rDUZO-CyWgoi-HM4qQh5bi7Fc/s1600/folie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIPm6QmdzlnSzOfy4Q6gGrUVSVnm3IH1oDFXvmcYjiisMwvBSyQI4NYMj_JU9eml6krjihKPxWKeuk_7MC9BH2b1X4uRcJLeuymp1QtWuNJrNLYOMsk9rDUZO-CyWgoi-HM4qQh5bi7Fc/s640/folie.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Ascenseur pour la folie</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyqrMTJ27PwZbMQJXEvfIfDxLCKgjFhOPM4j-sE3xvPUTPKZKPU-0Oj12dGaW0nktid1JaXfOad7mh0QapghVCawZldHNhqHRfw4EIMNuZnGj1lbNVJE5EuGWJQ0EQtzYX9mDSms_tV0Y/s1600/IMAG1475jpgFVjpgFV.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyqrMTJ27PwZbMQJXEvfIfDxLCKgjFhOPM4j-sE3xvPUTPKZKPU-0Oj12dGaW0nktid1JaXfOad7mh0QapghVCawZldHNhqHRfw4EIMNuZnGj1lbNVJE5EuGWJQ0EQtzYX9mDSms_tV0Y/s640/IMAG1475jpgFVjpgFV.jpg" width="382" /></a></div><div class="separator" style="clear: both; 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text-align: center;"><br /></div><div class="separator" style="text-align: left;clear: both; "><br /></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-14868041489348088572011-07-30T00:26:00.000-07:002013-08-03T06:43:10.959-07:00Les témoignages<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_6KAV5RX3ZxNIZr73JCEpN51dfxUm9tKFh9i7Qn4AEkFXLs6_tyXwCFpTCdfeyDQNUltgIFsW1JOLtHYbxk7f11PWl395klay3ELbYOB2BGp4iHEMnBOUGy3kEjtpeAS6eK-Eb2YC1tM/s1600/cong.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="92" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_6KAV5RX3ZxNIZr73JCEpN51dfxUm9tKFh9i7Qn4AEkFXLs6_tyXwCFpTCdfeyDQNUltgIFsW1JOLtHYbxk7f11PWl395klay3ELbYOB2BGp4iHEMnBOUGy3kEjtpeAS6eK-Eb2YC1tM/s640/cong.jpg" width="640" /></a></div><br /><br /><br /><div class="separator" style="clear: both; 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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo8RxpJrm9a5h_wPi-LXhoLHWeEmpj-yd2RBNX2dg784hzd2wNiGwTH4J0a3usxoLoSNVj8UXrZoGGXDqaWgOfQvvVPKckEaD914NJbl1uID472Dvj7dTATGK32g0uskJzSV3TjnyxweU/s1600/comm3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="452" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo8RxpJrm9a5h_wPi-LXhoLHWeEmpj-yd2RBNX2dg784hzd2wNiGwTH4J0a3usxoLoSNVj8UXrZoGGXDqaWgOfQvvVPKckEaD914NJbl1uID472Dvj7dTATGK32g0uskJzSV3TjnyxweU/s640/comm3.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicf3cpRnp-iAKxtyYIsiFxpJ9BE-3pnPNmSPtGUfWzAHZmq2NoEvFeTIywlU8IYh_qxse7gbttuBeSFaqQsx3iqwH7zWFrSNV2qPtTvmxDwyiQNpnn7toeIRGv9VyxU48u_HVP4Gm5k8I/s1600/comm4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="452" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicf3cpRnp-iAKxtyYIsiFxpJ9BE-3pnPNmSPtGUfWzAHZmq2NoEvFeTIywlU8IYh_qxse7gbttuBeSFaqQsx3iqwH7zWFrSNV2qPtTvmxDwyiQNpnn7toeIRGv9VyxU48u_HVP4Gm5k8I/s640/comm4.jpg" width="640" /></a></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-11129099221890385822011-07-29T00:56:00.003-07:002013-08-03T06:43:10.956-07:0050 ans de SJSR<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/EL700T9EJQY?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-37125888855151199192011-07-29T00:56:00.001-07:002013-08-03T06:43:10.969-07:00Tenir le coup<div class="separator" style="clear: both; text-align: center;"><object width="320" height="266" class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="http://i.ytimg.com/vi/5_FouvBE6PA/0.jpg"><param name="movie" value="http://www.youtube.com/v/5_FouvBE6PA?f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://www.youtube.com/v/5_FouvBE6PA?f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash"></embed></object></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-85577461526468088382011-07-29T00:55:00.001-07:002013-08-03T06:43:10.983-07:00SJSR à l'endroit<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/F7vTT-46c7E?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-67079327499293028432011-07-04T21:48:00.001-07:002013-08-03T06:43:10.977-07:00Humour<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/2bBMKtRm898?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-60090960808741539892011-07-04T21:45:00.001-07:002013-08-03T06:43:10.975-07:0020 secondes<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/3xvmdOb1aOQ?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-82517563276920438942011-07-04T21:34:00.001-07:002013-08-03T06:43:10.979-07:00Qui voudrait de ça?<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/X88FKvsF4aw?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-266695891042065832011-07-04T21:32:00.001-07:002013-08-03T06:43:10.965-07:001<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/3vl7cEwsv-0?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-55314445974020638802011-07-04T21:28:00.001-07:002013-08-03T06:43:10.971-07:00logique de photographe<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/NKnMaPVLdY0?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0tag:blogger.com,1999:blog-8220304657811503751.post-31226345884375290992011-07-04T21:21:00.001-07:002013-08-03T06:43:10.967-07:00préambule<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/F7vTT-46c7E?feature=player_embedded' frameborder='0'></iframe></div>Luhttp://www.blogger.com/profile/05667460952139867237noreply@blogger.com0