Nicole's dagboek op Internet.

(SMA type II) © 2006

Dinsdag 1 februari 2011.

Geplaatst op 01-02-2011 15:47 door Nicole Tromp
CategorieŽn: Dagboek.

Een behoorlijk druk weekje achter de rug. Zo druk gehad, dat ik er een beetje gek van werd. Toen ik vorige week maandag namelijk van de Wambeek thuiskwam, moest ik van alles regelen. Een nieuwe leverancier voor de sondevoeding, een taxiritje naar de rechtbank in Arnhem en nog iets dat ik nu nog niet kan verklappen. Door al dat gedoe vergat ik helemaal mijn oxicap bij mijn boven-bovenburen op te halen. Gelukkig waren ze zo aardig om deze even naar mij toe te brengen. Nogmaals bedankt.

Nieuwe leverancier sondevoeding regelen.
Een van de dingen die ik bijvoorbeeld moest regelen was een nieuwe leverancier voor de sondevoeding. Menzis had namelijk het contract met de oude leverancier, Huismann, opgezegd. De nieuwe leverancier, Medizorg, kon echter alleen sondevoeding en toebehoren leveren als ik niet thuis was. Of ik dan maar op deze dag thuis wilde blijven. Dat was ik uiteraard niet van plan. Op het Internet had ik gezien dat een oude bekende van mij, Tefa, ook weer een contract had met Menzis. Tefa onderhoudt nu ook al mijn beademingsapparatuur en vroeger waren zij ook mijn leverancier voor de sondevoeding. Dat ging toen allemaal in volle tevredenheid. Dus zou je denken: dan ga je toch even gauw weer naar Tefa? Nee, zo eenvoudig ging dat niet. Volgens Tefa klopte de machtiging niet en begon het grote heen en weer gestuur. Uiteindelijk heeft Menzis Tefa verzekert dat de verouderde machtiging, want daar lag het probleem, gewoon geldig was. Als het goed is, komt Tefa mij precies over een week een nieuwe voedingspomp, een Flocare Infinity, brengen. Ik ben benieuwd.

Rechtbank.
Zoals ik in mijn vorige log al aangaf, moest ik vorige week dinsdag naar de rechtbank in Arnhem voor mijn beroep tegen de gemeente Arnhem inzake de aangepaste rolstoelbus. Het kan dooien, het kan vriezen. Een betere beschrijving van de rechtszaak kan ik jullie niet geven. Ik zal echt niet weten welke kant het opgaat. Ik hoop natuurlijk dat de rechter mij gelijk gaat geven. Maar of dat ook daadwerkelijk gaat gebeuren... Het is gewoon nog vijf weken afwachten, totdat de uitspraak binnen is. Wel vond ik de argumentatie van de gemeente behoorlijk zwak. Met al de adviezen uit een uitgebreid onderzoeksrapport is bijvoorbeeld helemaal niets gedaan. Hiervoor hebben ze mijn inziens niet echt een goede reden kunnen geven. Hopelijk ziet de rechter dat ook zo.

Benefietconcert SMA.
Afgelopen zondag heb ik mede namens de diagnosewerkgroep SMA een benefietconcert ter ere voor de tweejarige Joey met SMA in Zoetermeer bezocht. Toen ik daar aankwam, bleek dat mijn beneden-beneden buurman daar ook was. Jammer dat we dat niet eerder van elkaar wisten; dan had ik kunnen vragen of ik op de heenweg met hem mee kon rijden. Had mij weer 110 km bij Valys bespaard. Nou ja, kan gebeuren. Het concert was er leuk en het was geweldig om te zien dat Joey er zelf ook van genoot. Jammer dat tijdens de voorstelling niet even kort maar krachtig werd uitgelegd wat SMA nu precies is. Misschien hadden we dan niet Ä 15.000 opgehaald, maar nog veel meer. Van die Ä 15.000 gaat een deel naar het onderzoek naar SMA in Nederland en een ander deel naar Joey zelf. Waarschijnlijk naar zijn ouders, want een tweejarige kan natuurlijk nog niet over zijn eigen geld beschikken. :-)


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20170208caihuali
Geplaatst op 08-02-2017 06:47 door 20170208caihuali
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Geplaatst op 27-01-2017 11:16 door honey
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Geplaatst op 25-01-2017 11:59 door heer


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